I had a clinic appointment recently and the Dr sat down and said that she needs to have a serious discussion with me but shes not pushing anything on me and that whatever my decision is they will respect that and help me in any way they can. I instantly knew it was about my weight and about the PEG so i prepared myself for an ear bashing about not eating enough and that i need to try harder etc etc...
But it didnt come! I was shocked, the Dr was really nice about it and she showed me the chart of my weight tracking since i joined them and it was shocking to say the least!
I was in 2009 around 54kg and since then with each infection getting worse and taking more of a toll on me, my weight is whats been suffering the most. I knew that it wasnt the best it could be or should be, but i didnt realise it was THAT bad. Its like ive been slowly disappearing and not realised it really.
So she discussed my options with me.
Option 1 :- To carry on as im doing so and just eat as much as i can and include a range of supplements as well. I can manage one supplement a day at the moment and use Polycal in most things i can, but i want to be having at least 3 supplements a day to give myself a chance. But it was made clear that if i chose this option that i would need to be having at least a minimum of 6 supplements a day plus my ordinary meals and snacks. This didnt seem realistic to me at all!
Option 2:- NG Feeding. This was right out the window from the start. I cant handle the thought of passing a tube up my nose and so i just wouldnt be able to actually do it. So thats two options out the window really.
Option 3:- I knew what this one was going to be. This was the PEG.
I have had lengthy discussions with the dietician about this and i nearly had it done in March. I was halfway there on the train and they rang me to say my bed has been cancelled and not to bother coming in. They had known this all day and decided now to ring me when they knew i would be travelling in. We went home and after lengthy phonecalls and people being so inept at communication i cancelled the whole thing and told them to forget about it.
I felt like it was fate telling me i didnt need it done and as i wasnt 100% about happy or wanting to have it done i felt it was the right thing to do at the time to cancel it.
Now i feel that it is my only option and so i have made the, for me, rather huge decision to have another go at having it done. This time i think it will go ahead as its fairly urgent now.
The Dr said if my weight drops any more and my lung function in turn gets worse that i am referred for being considered for a transplant, that they wouldnt even look at me due to my weight being so low. This scared me as i dont want to ever be in the position of needing a transplant, (though i know it is still possible with this disease being so unpredictable) and them turning me away for my possible second chance just because i cant keep myself weighty enough.
So after discussion with mum i decided i am going to have the PEG done. I rang the hospital on the Thursday last week to say i will go ahead with that option and the Dr has sent off my referral to the Endoscopy team. So its just a matter of waiting for that to be sorted now and then a plan of action wil be made for me to go in for a few days before the procedure for some IVs. I will stay for a while after the procedure as well to make sure my IVs are doing the trick and i am fully trained to manage my PEG at home.
I discussed my fears with the Dr then and there and for once i felt like she understood them! Anyone else ive told on the team ive always felt like they have just thought im being rediculous and to stop being so stupid. I didnt feel any pressure this time and i think thats partly because i know it is the best option for me now, where as previously i didnt think it was the right time at all.
Tuesday 5 July 2011
Ups and Downs...
So I've not blogged for ages!! I've not really known what to write up until now, but even now I'm not totally sure so this might be a bit of a random post, well see!
My emotions have been a struggle lately to say the least. Normally I'm good at keeping myself in check, i keep a diary of my own and anything gets written down in there, I've read back on some things and it doesn't even make much sense, but i guess at the time of writing it, it made me feel better so I'm not bothered. That diary is for me anyway and so others don't need to understand it.
For some reason i just stopped writing. I became very low and didn't really care about much. I wasn't very well which didn't help my low mood and i was snapping a lot at people who didn't deserve to be snapped at. I wasn't able to keep food down, unless it was ice cream or ice lollies. I was drinking tons but still became severely dehydrated and it ended up making my lips dry out so much at night that they would split and bleed. They became really quite sore and i used to use vaseline to heal my lips when this happened in the past but being on overnight oxygen now i couldn't do that, so i was struggling as i couldn't find a cream that would help me that wasn't going to also make my face explode :|
I wasn't sleeping so i was becoming more low by the day really, sleep only seemed to want to come to me at the most inconvenient times during the day and i had to relent most of the time and give in to it as i was pretty much propping my eyes open with matchsticks most days. My chest was drying up and was so painful as i kept getting plugs and random muscle spasms. The only thing that seemed to help my chest was hot water bottles and laying on my side. If i did any nebuliser it felt like it made my chest so tight and i just couldn't breathe properly afterwards. So i gave up.
I still have the wheelchair on loan from the red cross but it goes back at the end of this month so ill more than likely become a recluse again which will send my mood down again. I cant manage walking up the stairs properly i have to stop half way.
I went to clinic when i was really quite unwell and they wanted me in, i refused as i didn't think i needed IVs i just needed to keep my food down and get some sleep! I was exhausted. They prescribed me some orals I've not had before as i insisted that the ones they keep giving me now don't really do anything and the Cipro makes me throw up even more now. I also got some anti sickness pills. I started taking them that night and after a few days they seemed to be doing the trick. I managed to start keeping cereal down and eventually got up to having proper meals again.
I'm now keeping food down, my mood has really picked up, and I'm sleeping again! I went back to clinic the other day and was given some very mild anti depressants which also act as a sedative so they are helping me to sleep which is doing me the world of good it feels! They are also to help with my mood as its still not good but its improving slowly so well see how i go.
I'm going to do a separate blog about my recent clinic appointment as there was a big decisions made by me and i want to talk properly about it.
My emotions have been a struggle lately to say the least. Normally I'm good at keeping myself in check, i keep a diary of my own and anything gets written down in there, I've read back on some things and it doesn't even make much sense, but i guess at the time of writing it, it made me feel better so I'm not bothered. That diary is for me anyway and so others don't need to understand it.
For some reason i just stopped writing. I became very low and didn't really care about much. I wasn't very well which didn't help my low mood and i was snapping a lot at people who didn't deserve to be snapped at. I wasn't able to keep food down, unless it was ice cream or ice lollies. I was drinking tons but still became severely dehydrated and it ended up making my lips dry out so much at night that they would split and bleed. They became really quite sore and i used to use vaseline to heal my lips when this happened in the past but being on overnight oxygen now i couldn't do that, so i was struggling as i couldn't find a cream that would help me that wasn't going to also make my face explode :|
I wasn't sleeping so i was becoming more low by the day really, sleep only seemed to want to come to me at the most inconvenient times during the day and i had to relent most of the time and give in to it as i was pretty much propping my eyes open with matchsticks most days. My chest was drying up and was so painful as i kept getting plugs and random muscle spasms. The only thing that seemed to help my chest was hot water bottles and laying on my side. If i did any nebuliser it felt like it made my chest so tight and i just couldn't breathe properly afterwards. So i gave up.
I still have the wheelchair on loan from the red cross but it goes back at the end of this month so ill more than likely become a recluse again which will send my mood down again. I cant manage walking up the stairs properly i have to stop half way.
I went to clinic when i was really quite unwell and they wanted me in, i refused as i didn't think i needed IVs i just needed to keep my food down and get some sleep! I was exhausted. They prescribed me some orals I've not had before as i insisted that the ones they keep giving me now don't really do anything and the Cipro makes me throw up even more now. I also got some anti sickness pills. I started taking them that night and after a few days they seemed to be doing the trick. I managed to start keeping cereal down and eventually got up to having proper meals again.
I'm now keeping food down, my mood has really picked up, and I'm sleeping again! I went back to clinic the other day and was given some very mild anti depressants which also act as a sedative so they are helping me to sleep which is doing me the world of good it feels! They are also to help with my mood as its still not good but its improving slowly so well see how i go.
I'm going to do a separate blog about my recent clinic appointment as there was a big decisions made by me and i want to talk properly about it.
Thursday 9 June 2011
messy head
I don't know what this blog is about exactly but i need to clear my head somehow.
Its like my head is really full up with everything and i just cant clear my head. Its affecting my sleep, and stressing me out so now i can feel myself going down hill again just when id been making some good progress. Progress which the hospital didn't see as its all happened between appointments and so i know they wont fully believe me that things did improve for a while.
I'm stuck in a slump and once again I'm not sure how to get out of it. I have everything in my head on a "i could do this tomorrow" sort of list, but i just keep waking up and thinking "oh good, same crap, different day." Which is not how i want to be waking up! The weekends are better as i know I've got company 'coz mums not at work. I'm extremely looking forward to the summer holidays that the schools have just so mums at home and I've got someone to spend time with and do things with!
I'm really trying to get myself back onto my schedule of Neb's etc, I'm just finding it hard to get motivated. You think the fact that i know not doing my treatments regularly will make me worse would be something to motivate me. I don't want to end up on a transplant list, i don't want to get sicker than i already am, i want to do so much with my life, but at the moment i just cant get motivated or energised to do anything! All i seem to be able to do is sit around in my pj's all day, and I'm either just plain emotional and wanting to cry all the time over heaven knows what, or i just feel really angry at everything. Literally everything including my oxygen tubing, i got so pissed off with it the other night, being so hot on my face and being uncomfy with it i ripped it off my face and threw it across the room.
I want to know people but i don't know how to go about it because I'm not confident to go out on my own lately 'coz all i do is choke and stop every 5 mins. I hate being stared at like I've got some catching disease or something.
Maybe i just need to start writing things down a lot more, not always on here, some things i feel are too personal to put on here. Besides i don't actually think anyone really reads this blog apart from one person i know of.
Sometimes i wonder whats the point.
Its like my head is really full up with everything and i just cant clear my head. Its affecting my sleep, and stressing me out so now i can feel myself going down hill again just when id been making some good progress. Progress which the hospital didn't see as its all happened between appointments and so i know they wont fully believe me that things did improve for a while.
I'm stuck in a slump and once again I'm not sure how to get out of it. I have everything in my head on a "i could do this tomorrow" sort of list, but i just keep waking up and thinking "oh good, same crap, different day." Which is not how i want to be waking up! The weekends are better as i know I've got company 'coz mums not at work. I'm extremely looking forward to the summer holidays that the schools have just so mums at home and I've got someone to spend time with and do things with!
I'm really trying to get myself back onto my schedule of Neb's etc, I'm just finding it hard to get motivated. You think the fact that i know not doing my treatments regularly will make me worse would be something to motivate me. I don't want to end up on a transplant list, i don't want to get sicker than i already am, i want to do so much with my life, but at the moment i just cant get motivated or energised to do anything! All i seem to be able to do is sit around in my pj's all day, and I'm either just plain emotional and wanting to cry all the time over heaven knows what, or i just feel really angry at everything. Literally everything including my oxygen tubing, i got so pissed off with it the other night, being so hot on my face and being uncomfy with it i ripped it off my face and threw it across the room.
I want to know people but i don't know how to go about it because I'm not confident to go out on my own lately 'coz all i do is choke and stop every 5 mins. I hate being stared at like I've got some catching disease or something.
Maybe i just need to start writing things down a lot more, not always on here, some things i feel are too personal to put on here. Besides i don't actually think anyone really reads this blog apart from one person i know of.
Sometimes i wonder whats the point.
Wednesday 8 June 2011
Death in the family
Not the happiest blog ill ever write.
My cousin lost his 3 year (i think) battle against cancer yesterday morning. Although i knew that he had gone down hill the past month or so to the point that he wasnt even getting out of bed now and was becoming pretty much just skin and bones, but his passing was still unexpected.
My mum came home from work where one of my Aunts had rung her with the news and when she got home we went around to my Aunts who's son he is. (im not going to say 'was' because just becaused hes passed, doesnt make him any less her son). All the family rallied round and came over to say goodbye and comfort the rest of the family.
Although the circumstances were beyond horrible, it was still nice to see that my family are actually there for each other when it really counts. This did surprise me as ive never seen it happen before really.
My cousin who has passed was still there in his bed. It was a bit scary to see him at first like that, but after a while i was able to look at him properly and he looked so peaceful. He looked free from any pain he was in, and he looked just like he was sleeping and dreaming nice things. That in a way made it worse when you realised suddenly that you couldnt see him breathing and then it hits you again and again. Yet you still look for that rythm of breathing. I paniced when i couldnt see it the frist time i looked at him, and then i think that was when it really proved to me that he had passed on...
I didnt cry when i was at my Aunt's as i wanted to be strong for the family and my mum.
I cried when i got home though, much against my will as i hate crying 'coz it just makes me more tired and breathless, but i had to let it out. I told mum that i didnt feel like i should be upset this much as i wasnt that close to him. Because i had lived far away from him when i was growing up we never got to really know each other. But mum explained that he is still our family and that i do have every right to be upset just as much as the rest of the family do.
I think some of my sadness is from the shock of him going when he is so young. Hes the same age as me (22) and would have been 23 in a few weeks!
My family are all saying now that we need to all keep in contact more with each other. Ive been wanting this for ages, and its a shame its taken one of my cousins passing to have it happen...
My cousin lost his 3 year (i think) battle against cancer yesterday morning. Although i knew that he had gone down hill the past month or so to the point that he wasnt even getting out of bed now and was becoming pretty much just skin and bones, but his passing was still unexpected.
My mum came home from work where one of my Aunts had rung her with the news and when she got home we went around to my Aunts who's son he is. (im not going to say 'was' because just becaused hes passed, doesnt make him any less her son). All the family rallied round and came over to say goodbye and comfort the rest of the family.
Although the circumstances were beyond horrible, it was still nice to see that my family are actually there for each other when it really counts. This did surprise me as ive never seen it happen before really.
My cousin who has passed was still there in his bed. It was a bit scary to see him at first like that, but after a while i was able to look at him properly and he looked so peaceful. He looked free from any pain he was in, and he looked just like he was sleeping and dreaming nice things. That in a way made it worse when you realised suddenly that you couldnt see him breathing and then it hits you again and again. Yet you still look for that rythm of breathing. I paniced when i couldnt see it the frist time i looked at him, and then i think that was when it really proved to me that he had passed on...
I didnt cry when i was at my Aunt's as i wanted to be strong for the family and my mum.
I cried when i got home though, much against my will as i hate crying 'coz it just makes me more tired and breathless, but i had to let it out. I told mum that i didnt feel like i should be upset this much as i wasnt that close to him. Because i had lived far away from him when i was growing up we never got to really know each other. But mum explained that he is still our family and that i do have every right to be upset just as much as the rest of the family do.
I think some of my sadness is from the shock of him going when he is so young. Hes the same age as me (22) and would have been 23 in a few weeks!
My family are all saying now that we need to all keep in contact more with each other. Ive been wanting this for ages, and its a shame its taken one of my cousins passing to have it happen...
Wednesday 11 May 2011
wheelchairs and exams
I sat my first exam yesterday! It was an early morning one, which was all fine when i lived in Bristol last year, but this year I've lived at home for health conveniences and so i have to get a train and buses to get to Uni if i need to go.
There was no way i would be able to manage on my own as the connections for the buses when i got off the train were a bit hurried and i just cant do "hurry" right now. Hopefully i will again soon!
So mum came with me and we took the wheelchair that I'm hiring for 6 weeks from the red cross. I didn't initially want to take the wheelchair as i didn't want my friends to see me in one, i know that sounds a bit stupid, but who does want their friends to see them like that really? It just accentuates how different you are from your friends, how different your life is to their "normal" healthy one.
But i thought about it in the days leading up to my exam morning and i realised i wouldn't be able to cope walking so it was really in my best interest to use the wheelchair, i mean what else did we hire it out for if I'm not going to use it! So yesterday we got up at 5am, and the taxi we had booked arrived at 6am as we had to get the first train at 6.40am to be able to get there on time.
Although it only takes 1/2 an hour via train from mine to Bristol we had to get that train so we could make the buses that would get us there on time, if we got a later train we wouldn't get the buses on time as their timetables don't coincide with each other. So we ended up getting to Uni for like 8.10am or something like that and my exam was at 9.30am 'till 11.30am.
Me and mum went to one of the cafes on campus and i had a friend come up and meet me so i had someone to walk over the exam room with, as that wasn't far and was on relatively flat land so would be easier. I bought mum a coffee and a danish cake before i left for my exam and then went back to her after my exam was finished. Its lucky my exam was only two hours and not three like Fridays will be 'coz mum looked pretty bored when i got back ha ha! She couldn't really explore the uni as she had the wheelchair with her.
My exam was okay i suppose, i do think it will be a resit as it was a case of i knew the questions and it was things id revised (which made a nice change) but i couldn't for the life of me clear my head enough to remember stuff from my revision to answer them :( I tried my best and I'm trying to instill that "that's the best anyone and myself can ask for" saying into my head so i don't feel too rotten about it. At least this year i have managed to get some extenuating circumstances for my exams and my previous courseworks so if i do need to resit any exams or coursework then i wont have to pay for it and it wont be capped either! :)
Ive just got Fridays three hour (fun) exam to get out the way with then and its just 2 group presentations then at the end of the month which i think we've all pretty much prepared for and just have a little bit left to do on them which is good! If i do have resits to do, which i am expecting to, not because i don't have confidence in myself this year, but because i had so much interruptions during third year i didn't really "learn" anything properly if that makes sense... then it means i wont be graduating in July i think it was but instead it will happen in November. Which isn't too bad, as long as i graduate at *some* point this year i don't really mind!!
Being in the wheelchair its given me a different perspective on CF and my life in general. Its making me want to walk a bit more so that's good! I am trying to get up to get myself a drink or food instead of asking mum to get me something, unless its something large that needs cooking, i havn't quite gotten there yet. Though i did manage to make scrambled egg on toast the other morning and i'm still alive :D Ive never had much success with cooking eggs myself ha ha!
I said about being on overnight oxygen in a previous blog and i said that its making my chest looser in the mornings, but i wasn't sure if that was due to the oxygen or not. But I'm beginning to think its a combination of that and the bumpy roads we sometimes have to go over in the wheelchair, its shaking up my chest like a fizzy bottle and this morning I'm clearly so much junk its great! Its a bit dark tho which in the past usually signifies that I've got an infection or one brewing at least, so ill have to step things up for a bit and see how things are at next clinic. I'm back at the gym now and told my trainer i want to do some weights as well now along with cardio and so i did a small circuit the other day and I'm back tomorrow morning when well work in some cardio to my weights circuit :) Were starting gentle again as i had a month off for various reasons and coz i don't last for exercise for very long at the moment, but hopefully i can build up my tolerance.
Anyway better get back to my revision :| Ill be glad when its Friday 5pm as that's when my exam finishes and I'm free!! Sort of :p
There was no way i would be able to manage on my own as the connections for the buses when i got off the train were a bit hurried and i just cant do "hurry" right now. Hopefully i will again soon!
So mum came with me and we took the wheelchair that I'm hiring for 6 weeks from the red cross. I didn't initially want to take the wheelchair as i didn't want my friends to see me in one, i know that sounds a bit stupid, but who does want their friends to see them like that really? It just accentuates how different you are from your friends, how different your life is to their "normal" healthy one.
But i thought about it in the days leading up to my exam morning and i realised i wouldn't be able to cope walking so it was really in my best interest to use the wheelchair, i mean what else did we hire it out for if I'm not going to use it! So yesterday we got up at 5am, and the taxi we had booked arrived at 6am as we had to get the first train at 6.40am to be able to get there on time.
Although it only takes 1/2 an hour via train from mine to Bristol we had to get that train so we could make the buses that would get us there on time, if we got a later train we wouldn't get the buses on time as their timetables don't coincide with each other. So we ended up getting to Uni for like 8.10am or something like that and my exam was at 9.30am 'till 11.30am.
Me and mum went to one of the cafes on campus and i had a friend come up and meet me so i had someone to walk over the exam room with, as that wasn't far and was on relatively flat land so would be easier. I bought mum a coffee and a danish cake before i left for my exam and then went back to her after my exam was finished. Its lucky my exam was only two hours and not three like Fridays will be 'coz mum looked pretty bored when i got back ha ha! She couldn't really explore the uni as she had the wheelchair with her.
My exam was okay i suppose, i do think it will be a resit as it was a case of i knew the questions and it was things id revised (which made a nice change) but i couldn't for the life of me clear my head enough to remember stuff from my revision to answer them :( I tried my best and I'm trying to instill that "that's the best anyone and myself can ask for" saying into my head so i don't feel too rotten about it. At least this year i have managed to get some extenuating circumstances for my exams and my previous courseworks so if i do need to resit any exams or coursework then i wont have to pay for it and it wont be capped either! :)
Ive just got Fridays three hour (fun) exam to get out the way with then and its just 2 group presentations then at the end of the month which i think we've all pretty much prepared for and just have a little bit left to do on them which is good! If i do have resits to do, which i am expecting to, not because i don't have confidence in myself this year, but because i had so much interruptions during third year i didn't really "learn" anything properly if that makes sense... then it means i wont be graduating in July i think it was but instead it will happen in November. Which isn't too bad, as long as i graduate at *some* point this year i don't really mind!!
Being in the wheelchair its given me a different perspective on CF and my life in general. Its making me want to walk a bit more so that's good! I am trying to get up to get myself a drink or food instead of asking mum to get me something, unless its something large that needs cooking, i havn't quite gotten there yet. Though i did manage to make scrambled egg on toast the other morning and i'm still alive :D Ive never had much success with cooking eggs myself ha ha!
I said about being on overnight oxygen in a previous blog and i said that its making my chest looser in the mornings, but i wasn't sure if that was due to the oxygen or not. But I'm beginning to think its a combination of that and the bumpy roads we sometimes have to go over in the wheelchair, its shaking up my chest like a fizzy bottle and this morning I'm clearly so much junk its great! Its a bit dark tho which in the past usually signifies that I've got an infection or one brewing at least, so ill have to step things up for a bit and see how things are at next clinic. I'm back at the gym now and told my trainer i want to do some weights as well now along with cardio and so i did a small circuit the other day and I'm back tomorrow morning when well work in some cardio to my weights circuit :) Were starting gentle again as i had a month off for various reasons and coz i don't last for exercise for very long at the moment, but hopefully i can build up my tolerance.
Anyway better get back to my revision :| Ill be glad when its Friday 5pm as that's when my exam finishes and I'm free!! Sort of :p
Sunday 8 May 2011
Changes and revision
Im taking a nice break from revision to write this posting :)
Ive not gotten as much done revision wise today as i would have hoped/wanted too, but ive been SUPER tired all day. I got up at 8 something this morning because i had to. Miraculously jumped straight in the shower, got out and was ready to go back to sleep! Managed to finish sorting myself out and by 10am i was kipping on the sofa until 11am! Not how i wanted my morning to go, but i just couldnt keep my eyes open.
Eventually i managed to get some revision done, then i started to crash again after lunch. So me and mum went into town for some fresh air and some things we needed to get. And also some things i got that didnt really need to get but still did!
Ive got a wheelchair for 6 weeks that im hiring from the Red Cross. So we took me to town in that yesterday and today. I was a bit self conscious of being in it at first, as the only other times ive been in a wheelchair is when im an inpatient and being taken to x-ray or something, even then im self conscious. I think its because of the fact that i know i have the use of my legs, and im not saying all wheelchair users i see dont have the use of their legs, i know some do, and they are using the chair for unseen reasons perhaps, like myself. But walking for me lately is just ridiculously hard and im knackered after 1/2 an hour or some days less so things like shopping trips like we used to have been out of the question and most of the time i just wouldnt go out at all as i knew the pain i would be in when i did start walking.
Another recent change is that ive been put on home oxygen for during the night. I did an oximetry testing for a few nights at home and gave the machine back at my last clinic. The physio rang the other day to discuss the wheelchair options and talked about the oximetry results as well. Apparently my sats were dropping to around 90 most nights and my heart rate was usually in the hundreds. I think i remember looking at the machine once when i woke during the night and my heart rate was around 130! So not really normal... So even tho these results are borderline apparently of something they think that overnight oxygen would be of some benefit to me. Im on 1 litre and then in 6 weeks time they want me to do another set of oximetry tests i think using the oxygen and then they will reassess if needed depending on those results.
Im not sure how i feel about it all really. I mean i knew what the results would show as the things that the physios were saying that indicates a need for oxygen i am getting, and a lot was in the morning. Countless times ive woken up with a stuffy headache and blue nails.
Im worried that this is the "beginning" of oxygen needs and that theres more to go downhill from here now. I worried that my lungs will become dependant at night for this air and then suffer during the day when its taken away in the morning... We shall see how things go. At least im not coughing so much at night now!
Its only been 2 nights that ive used it so far as it was only all delivered on friday, but my chest is already nice and loose in the mornings. I dont know for a fact if this is because of the oxygen or because my lungs want to behave for a while, but its reducing my coughing fit in the morning which is reducing the either almost throw up or actually throwing up, and that cant be a bad thing!!
Theres not really anything else to report on i dont think. Mums taking the day off work for me on tuesday so she can take me to my exam as it starts at 9.30 and it means hurrying on trains and buses to get to the uni on time. At the moment i will be taking the wheelchair to make my life easier and mean i will be less knackered during my exam, but this could change ill see how i feel.
It does amaze me however the difference in the world you see when sat in a wheelchair and how much nicer everyone suddenly becomes! It also shocks me the places some people choose to suddenly stop in the middle of the path without bothering to see whos behind them! Very annoying.
*sigh* back to revision i suppose. Hope everyone who reads this is well and happy as they can be!
Ive not gotten as much done revision wise today as i would have hoped/wanted too, but ive been SUPER tired all day. I got up at 8 something this morning because i had to. Miraculously jumped straight in the shower, got out and was ready to go back to sleep! Managed to finish sorting myself out and by 10am i was kipping on the sofa until 11am! Not how i wanted my morning to go, but i just couldnt keep my eyes open.
Eventually i managed to get some revision done, then i started to crash again after lunch. So me and mum went into town for some fresh air and some things we needed to get. And also some things i got that didnt really need to get but still did!
Ive got a wheelchair for 6 weeks that im hiring from the Red Cross. So we took me to town in that yesterday and today. I was a bit self conscious of being in it at first, as the only other times ive been in a wheelchair is when im an inpatient and being taken to x-ray or something, even then im self conscious. I think its because of the fact that i know i have the use of my legs, and im not saying all wheelchair users i see dont have the use of their legs, i know some do, and they are using the chair for unseen reasons perhaps, like myself. But walking for me lately is just ridiculously hard and im knackered after 1/2 an hour or some days less so things like shopping trips like we used to have been out of the question and most of the time i just wouldnt go out at all as i knew the pain i would be in when i did start walking.
Another recent change is that ive been put on home oxygen for during the night. I did an oximetry testing for a few nights at home and gave the machine back at my last clinic. The physio rang the other day to discuss the wheelchair options and talked about the oximetry results as well. Apparently my sats were dropping to around 90 most nights and my heart rate was usually in the hundreds. I think i remember looking at the machine once when i woke during the night and my heart rate was around 130! So not really normal... So even tho these results are borderline apparently of something they think that overnight oxygen would be of some benefit to me. Im on 1 litre and then in 6 weeks time they want me to do another set of oximetry tests i think using the oxygen and then they will reassess if needed depending on those results.
Im not sure how i feel about it all really. I mean i knew what the results would show as the things that the physios were saying that indicates a need for oxygen i am getting, and a lot was in the morning. Countless times ive woken up with a stuffy headache and blue nails.
Im worried that this is the "beginning" of oxygen needs and that theres more to go downhill from here now. I worried that my lungs will become dependant at night for this air and then suffer during the day when its taken away in the morning... We shall see how things go. At least im not coughing so much at night now!
Its only been 2 nights that ive used it so far as it was only all delivered on friday, but my chest is already nice and loose in the mornings. I dont know for a fact if this is because of the oxygen or because my lungs want to behave for a while, but its reducing my coughing fit in the morning which is reducing the either almost throw up or actually throwing up, and that cant be a bad thing!!
Theres not really anything else to report on i dont think. Mums taking the day off work for me on tuesday so she can take me to my exam as it starts at 9.30 and it means hurrying on trains and buses to get to the uni on time. At the moment i will be taking the wheelchair to make my life easier and mean i will be less knackered during my exam, but this could change ill see how i feel.
It does amaze me however the difference in the world you see when sat in a wheelchair and how much nicer everyone suddenly becomes! It also shocks me the places some people choose to suddenly stop in the middle of the path without bothering to see whos behind them! Very annoying.
*sigh* back to revision i suppose. Hope everyone who reads this is well and happy as they can be!
Tuesday 3 May 2011
Feeling Loved...
Or not so much in this case.
This posting is a little bit of a rant.
I'm still finishing up the last little bits of Uni work, and one of them being a team project for something called Consultancy Project. This is where we were given a real life client (compared to the previous year in a similar module where we were given a client from within the Uni) who needed something technical doing, whether that meant they wanted a database of something created and applied to their systems already in use, or just a new or redesign of their existing website we were given the task to do this as if we were doing this in real life and not for a Uni module.
Right now me and my team for this module are finishing up the last piece of written work for it which is the final report of how everything went, from the first initial meeting to the sign off and leg work afterwards. During a large part of what ill call "phase 3" i was incredibly ill and was either in hospital or at home resting and on IVs. Hence i couldn't attend Uni.
My team mates were incredibly understanding of which i thank them for immensely as theres nothing worse than non-understanding team mates about something totally beyond your control.
I managed still to keep up with the project progress and still managed to do some share of the work, but with either no Internet access when in hospital or no energy to barely type when at home i was very limited in what work i could do and how much of it i could do. My team did pick up a lot of the slack and for that we managed to stay on track and finish deadlines in time.
But towards the end of this project as I've not been able to go back from being unwell, the information about the project they have been telling me has been less and less. Now i find out theres a team meeting tomorrow and i found out through facebook of one of the team members. No one had bothered to tell me! I have improved somewhat from a few months ago and might have been able to prepare for a trip to Bristol if they had told me in advance, but they didn't even bother to see if i could attend.
It is only to put together the final report and i think to hand it in, but that's not really the point for me. I am still a member of that team and its like because I've been away from them for so long now due to being unwell, they have forgotten to include me in the project progression. It makes me wonder what else i don't even know about!
It has pissed me off a little and i think rightly so. Its not just Uni team mates for coursework that forget about me because i cant do what they all do so naturally, like move about so easily or even hell just breath so easily!! It really feels like its a case of "out of sight, out of mind".
Ive got no friends who ask me how i am (baring Emily, but shes a lot more than a friend, shes my person. Only she will understand that reference.), none of them visit/ed me in hospital when i was living with them. Once when Emily was just heading out the door to get the bus to come see me one evening in hospital one of the other housemates asked if she was going to see me, Em replied yes, thinking this person wanted to come as well, but was instead handed some coursework for me to complete from her. They were not doing anything and i know they had the time to come and see me, and its not as if they could complain about bus fare as they had a free bus pass from the uni for a bus that stopped right outside the dam hospital i was in!
I guess the ranting point I'm trying to make is, that the sicker i get (and I'm sure this applies for other CFers as well) the less my so called friends want to know me. Its like its too much effort for them to have a disabled friend i guess, for them to have a friend who needs a bit of extra care and help sometimes. It really disgusts me sometimes, how selfish, and dam right two faced some people can be. If the tables were turnt on some of the people i know, they would be stamping their feet for not getting enough attention and heart felt crys of sorrow for their impossible situation of ill health!!
Because God forbid they should be "out of sight, out of mind".
Thank god for my Mum and Emily. At least i know I've got at least 2 true friends in this life and world.
This posting is a little bit of a rant.
I'm still finishing up the last little bits of Uni work, and one of them being a team project for something called Consultancy Project. This is where we were given a real life client (compared to the previous year in a similar module where we were given a client from within the Uni) who needed something technical doing, whether that meant they wanted a database of something created and applied to their systems already in use, or just a new or redesign of their existing website we were given the task to do this as if we were doing this in real life and not for a Uni module.
Right now me and my team for this module are finishing up the last piece of written work for it which is the final report of how everything went, from the first initial meeting to the sign off and leg work afterwards. During a large part of what ill call "phase 3" i was incredibly ill and was either in hospital or at home resting and on IVs. Hence i couldn't attend Uni.
My team mates were incredibly understanding of which i thank them for immensely as theres nothing worse than non-understanding team mates about something totally beyond your control.
I managed still to keep up with the project progress and still managed to do some share of the work, but with either no Internet access when in hospital or no energy to barely type when at home i was very limited in what work i could do and how much of it i could do. My team did pick up a lot of the slack and for that we managed to stay on track and finish deadlines in time.
But towards the end of this project as I've not been able to go back from being unwell, the information about the project they have been telling me has been less and less. Now i find out theres a team meeting tomorrow and i found out through facebook of one of the team members. No one had bothered to tell me! I have improved somewhat from a few months ago and might have been able to prepare for a trip to Bristol if they had told me in advance, but they didn't even bother to see if i could attend.
It is only to put together the final report and i think to hand it in, but that's not really the point for me. I am still a member of that team and its like because I've been away from them for so long now due to being unwell, they have forgotten to include me in the project progression. It makes me wonder what else i don't even know about!
It has pissed me off a little and i think rightly so. Its not just Uni team mates for coursework that forget about me because i cant do what they all do so naturally, like move about so easily or even hell just breath so easily!! It really feels like its a case of "out of sight, out of mind".
Ive got no friends who ask me how i am (baring Emily, but shes a lot more than a friend, shes my person. Only she will understand that reference.), none of them visit/ed me in hospital when i was living with them. Once when Emily was just heading out the door to get the bus to come see me one evening in hospital one of the other housemates asked if she was going to see me, Em replied yes, thinking this person wanted to come as well, but was instead handed some coursework for me to complete from her. They were not doing anything and i know they had the time to come and see me, and its not as if they could complain about bus fare as they had a free bus pass from the uni for a bus that stopped right outside the dam hospital i was in!
I guess the ranting point I'm trying to make is, that the sicker i get (and I'm sure this applies for other CFers as well) the less my so called friends want to know me. Its like its too much effort for them to have a disabled friend i guess, for them to have a friend who needs a bit of extra care and help sometimes. It really disgusts me sometimes, how selfish, and dam right two faced some people can be. If the tables were turnt on some of the people i know, they would be stamping their feet for not getting enough attention and heart felt crys of sorrow for their impossible situation of ill health!!
Because God forbid they should be "out of sight, out of mind".
Thank god for my Mum and Emily. At least i know I've got at least 2 true friends in this life and world.
Saturday 30 April 2011
Get up and go
A while ago, my "get up and go" got up and went completely. I was pretty ill for my standards for i would say a good few months and its left me with a lot of issues i didn't have to deal with before, like 38% lung function and 45kg in weight.
But the past few weeks i think its been coming back. Albeit slowly yes, but its getting there. I think the sunshine has helped, i hate Winter, it does nothing for me at all except hospitalise me or house bound me further as the cold now makes my lungs bleed a great deal and that freaks me out no matter how many times its happened! But i think that feeling is the same for most people when they cough up blood...
Ive started doing my dnase again in the mornings, I'm able to wake up and actually get up earlier which means i don't get a headache all day from being in a hot room and sleeping all morning. It also means i can have breakfast which means more calories to take in each day :)
In the evenings now as its usually quite nice me and mum go out for a walk, its not long walks across the fields, usually just around the block as that's all i can handle right now. But i want to build it up, i desperately want some strength back in my lungs! The walk does help me, i can clear a lot sometimes, other times not so much but that's okay.
I am still going to get a wheelchair, I'm waiting for the team member who deals with that sort of thing to get back to me about it, as i still cant handle long day trips out, and that's bothering me a lot more than not being able to walk to town right now, as its not fair on mum, especially when she breaks up for summer holidays (she works in a school so she gets all the holidays they do which is really nice). So well mainly be using the wheelchair for when were wanting to go further afield for shopping or a day out or something. I might use it if I'm having a particularly bad day and we still want to go to town, but otherwise i would still like to walk about town. I don't want to become reliant on it as then ill get no where with getting myself fitter.
I'm going back to the gym, i just need to book some appointments in with my trainer and i want to start doing walking on the treadmill on a slight incline, some time on the bike and i want to start doing some light weights again so i can start defining some muscle and not have stick legs come summer time :p Plus if i can develop some muscle it might add some weight on me as well, as muscle is heavier than fat! That will shut my dietician up, its my mission in life right now to prove to her i can do this weight gain on my own, i just need her to stop mentioning all the time when she sees me how thin i am, and how i need the PEG. I think if she mentions it at the next appointment i will explode at her. I still don't think that the dieticians understand one bit how hard it is for a CFer to gain weight, no matter if they eat 14 KFCs each week or something extreme like that. Just because they might specialise in CF doesn't mean they understand it for how it is for the actual patient, no matter how much the patient tries to explain it... Rant over :p
I went to town today, and for the first time in a while i didn't feel sick and need to sit down every 5mins! I was able to stand and walk around the shops, still at a snails pace which i think annoyed people who got stuck behind me but never mind!
I'm beginning to think that i have an addiction to buying PJ's. I got some Animal PJ's from Peacocks today, its a t-shirt type top with Animal on it, and the trousers to match which have images of him on there and the word Animal down one of the legs :) I also hate my neck and top of my chest getting cold and as i wear a lot of vest type tops i find myself wearing my scarf still if I'm outside and its breezy, so mum took me to the outdoor market today and i got some of them better, fashionable scarfs that everyone wears. I got two for £10, which is better as i was going to get one in New Look that would have cost me £8 so i saved some money there :) Now i cant stop wearing them! One is a black one with a pattern stitched in white and its got some feint reddy brown stitching going through it as well, and the other is white with lots of "blobs" of color all over it. Ill try and put some pics up later if i remember!
Anyway I've rambled enough now, i better get on with some revision!
But the past few weeks i think its been coming back. Albeit slowly yes, but its getting there. I think the sunshine has helped, i hate Winter, it does nothing for me at all except hospitalise me or house bound me further as the cold now makes my lungs bleed a great deal and that freaks me out no matter how many times its happened! But i think that feeling is the same for most people when they cough up blood...
Ive started doing my dnase again in the mornings, I'm able to wake up and actually get up earlier which means i don't get a headache all day from being in a hot room and sleeping all morning. It also means i can have breakfast which means more calories to take in each day :)
In the evenings now as its usually quite nice me and mum go out for a walk, its not long walks across the fields, usually just around the block as that's all i can handle right now. But i want to build it up, i desperately want some strength back in my lungs! The walk does help me, i can clear a lot sometimes, other times not so much but that's okay.
I am still going to get a wheelchair, I'm waiting for the team member who deals with that sort of thing to get back to me about it, as i still cant handle long day trips out, and that's bothering me a lot more than not being able to walk to town right now, as its not fair on mum, especially when she breaks up for summer holidays (she works in a school so she gets all the holidays they do which is really nice). So well mainly be using the wheelchair for when were wanting to go further afield for shopping or a day out or something. I might use it if I'm having a particularly bad day and we still want to go to town, but otherwise i would still like to walk about town. I don't want to become reliant on it as then ill get no where with getting myself fitter.
I'm going back to the gym, i just need to book some appointments in with my trainer and i want to start doing walking on the treadmill on a slight incline, some time on the bike and i want to start doing some light weights again so i can start defining some muscle and not have stick legs come summer time :p Plus if i can develop some muscle it might add some weight on me as well, as muscle is heavier than fat! That will shut my dietician up, its my mission in life right now to prove to her i can do this weight gain on my own, i just need her to stop mentioning all the time when she sees me how thin i am, and how i need the PEG. I think if she mentions it at the next appointment i will explode at her. I still don't think that the dieticians understand one bit how hard it is for a CFer to gain weight, no matter if they eat 14 KFCs each week or something extreme like that. Just because they might specialise in CF doesn't mean they understand it for how it is for the actual patient, no matter how much the patient tries to explain it... Rant over :p
I went to town today, and for the first time in a while i didn't feel sick and need to sit down every 5mins! I was able to stand and walk around the shops, still at a snails pace which i think annoyed people who got stuck behind me but never mind!
I'm beginning to think that i have an addiction to buying PJ's. I got some Animal PJ's from Peacocks today, its a t-shirt type top with Animal on it, and the trousers to match which have images of him on there and the word Animal down one of the legs :) I also hate my neck and top of my chest getting cold and as i wear a lot of vest type tops i find myself wearing my scarf still if I'm outside and its breezy, so mum took me to the outdoor market today and i got some of them better, fashionable scarfs that everyone wears. I got two for £10, which is better as i was going to get one in New Look that would have cost me £8 so i saved some money there :) Now i cant stop wearing them! One is a black one with a pattern stitched in white and its got some feint reddy brown stitching going through it as well, and the other is white with lots of "blobs" of color all over it. Ill try and put some pics up later if i remember!
Anyway I've rambled enough now, i better get on with some revision!
Thursday 28 April 2011
I'll get by...
Its taken me a while to get to this non-stressed level, and start to feel remotely happy. For people reading this who don't understand what that sentence means to me ill briefly explain...
During Uni, stress from the course and me not getting along with it got to me a lot, and ultimately made me very ill as i don't deal well under a lot of pressure. And pressure is certainly the understatement of what i put myself under! I made myself believe that i didn't belong at Uni, because i didn't have the same level of understanding of the content as my fellow course mates did, because i didn't enjoy the lectures like they did, because i didn't understand the assignments like they did or get what i was supposed to be doing in the tutorials. Because i wasn't exactly on the same level as everyone else i pressured myself about it, and spent countless nights sat up crying from stress and feeling generally crap about myself, telling myself how useless i was and that I'm so thick its a total fluke i got into Uni.
I spent everyday waiting for a letter to come through saying "sorry we made a mistake and we didn't actually accept you after all". Even though none of this was true, i had managed to make myself think and believe fully that it was true and that i was thick as two planks of wood etc, and so it made it extremely harder for me everyday.
All of this stress as you can imagine made me very ill, and i ended up not really eating properly, i think that started the beginnings of the weight problems i have today, it landed me in hospital countless times, adding more stress as i couldn't then do my uni work and i would spend the time in hospital worrying about falling behind rather than getting anywhere near better! I had the amount of times needed for IVs increased, which led to me getting my port as my veins couldn't handle it anymore, now they want me to have a PEG still and I'm fighting that with all i have in me.
Although Ive said it before that i regret going to Uni and living away from home, i don't really. Yes Ive screwed my health up a lot and I'm paying the price for that now, but I'm starting to pull my finger out as of yesterday. Its time for me to stop hiding under the duvet and thinking things will sort themselves out, as they wont and ill end up getting worse and worse. That's now what i or anyone wants really!
Then how am i supposed to live the life i keep saying i want...
I started to sort myself out yesterday by walking up the shop with mum. I spent way too much on sweets but never mind! I got home and was quite tired from such a simple walk but i was proud i did it! My aim is to get walking to town again, even if I'm too tired to walk home i need a taxi home for now, i don't mind as i can build things up.
I take my pills everyday now, and I'm managing 3 meals a day with snacks in between, and this morning even managed to do 2 Neb's which is a massive improvement on previous days/weeks/months ha ha! So I'm off to a good start. Mums helping me a lot with the food side of things, coming up with new ways to cook things for me to make them more fattening and things like that!
I actually managed to hang the washing out for mum yesterday, and I'm planning to try and hoover today. These things are not simple for me to do though, the washing yesterday took me nearly half and hour, i think by the time id pegged up the last item the first item was dry ha ha! But it was the effort that counted for me :)
Im starting to get some motivation back now, and im making the most of it!!
During Uni, stress from the course and me not getting along with it got to me a lot, and ultimately made me very ill as i don't deal well under a lot of pressure. And pressure is certainly the understatement of what i put myself under! I made myself believe that i didn't belong at Uni, because i didn't have the same level of understanding of the content as my fellow course mates did, because i didn't enjoy the lectures like they did, because i didn't understand the assignments like they did or get what i was supposed to be doing in the tutorials. Because i wasn't exactly on the same level as everyone else i pressured myself about it, and spent countless nights sat up crying from stress and feeling generally crap about myself, telling myself how useless i was and that I'm so thick its a total fluke i got into Uni.
I spent everyday waiting for a letter to come through saying "sorry we made a mistake and we didn't actually accept you after all". Even though none of this was true, i had managed to make myself think and believe fully that it was true and that i was thick as two planks of wood etc, and so it made it extremely harder for me everyday.
All of this stress as you can imagine made me very ill, and i ended up not really eating properly, i think that started the beginnings of the weight problems i have today, it landed me in hospital countless times, adding more stress as i couldn't then do my uni work and i would spend the time in hospital worrying about falling behind rather than getting anywhere near better! I had the amount of times needed for IVs increased, which led to me getting my port as my veins couldn't handle it anymore, now they want me to have a PEG still and I'm fighting that with all i have in me.
Although Ive said it before that i regret going to Uni and living away from home, i don't really. Yes Ive screwed my health up a lot and I'm paying the price for that now, but I'm starting to pull my finger out as of yesterday. Its time for me to stop hiding under the duvet and thinking things will sort themselves out, as they wont and ill end up getting worse and worse. That's now what i or anyone wants really!
Then how am i supposed to live the life i keep saying i want...
I started to sort myself out yesterday by walking up the shop with mum. I spent way too much on sweets but never mind! I got home and was quite tired from such a simple walk but i was proud i did it! My aim is to get walking to town again, even if I'm too tired to walk home i need a taxi home for now, i don't mind as i can build things up.
I take my pills everyday now, and I'm managing 3 meals a day with snacks in between, and this morning even managed to do 2 Neb's which is a massive improvement on previous days/weeks/months ha ha! So I'm off to a good start. Mums helping me a lot with the food side of things, coming up with new ways to cook things for me to make them more fattening and things like that!
I actually managed to hang the washing out for mum yesterday, and I'm planning to try and hoover today. These things are not simple for me to do though, the washing yesterday took me nearly half and hour, i think by the time id pegged up the last item the first item was dry ha ha! But it was the effort that counted for me :)
Im starting to get some motivation back now, and im making the most of it!!
Thursday 21 April 2011
Been a while!
Ive been meaning to do a blog posting for a while now, but just kept thinking "oh ill do it later" but later never seemed to arrive.
Me and mum went to see my sister and brother in law recently. They have just moved into a caravan on some holiday park in Northampton. We caught the train quite early last friday and had to change at Didcot parkway to get to Oxford where they were meeting us with the car to drive the rest of the way there, otherwise we would have to go all the way up the country to come all the way back down and it was just stupid!
I managed okay in the morning, id been doing well with getting up and getting sorted recently and that morning was not much different. We got to didcot fine, but then i had to tackle the dam stairs!! Steep for me wasnt the word!! I had to stop lots of times, then we realised we were on the wrong platform and so i had to go all the way back down, along and up more stairs to get the right train! I was knackered :(
Eventually we got to Oxford and i felt like crap! I was cold, i was shaky, i was not myself at all and i couldnt stomach any food either. I tried to walk around the Primark we found in the town but it just wasnt happening at all for me. We got some lunch at BHS but i couldnt even manage to eat any jelly :( i had a pepsi which i realised was the wrong thing as its a cold drink, so mum got me a hot chocolate which after i burnt my tounge on (traditional with me and hot chocolate) warmed me up just lovely! We got back to my sisters and i just pretty much remember sleeping from then on, i know i had a raging migraine, so the Anadin i took knocked me out for that. I dont think i really made much of an appearance until the morning!
Much of my stay at my sisters was spent feeling incredibly ill, cold, shaky, racing heart, very hard to breath which only got worse as the week went on. Theres a place called Salcey Forest, and you can go walking in the forests they have there on the routes set out and they have it set up so you can walk literally amoung the treetops! I saw mums pics on her camera and its pretty beautiful up there. Unfortunately just the walk to the "rigging in the trees" pretty much killed me and my body refused to let me go on. It put me into a right horrid mood. Dont get me wrong i did enjoy the area and being in such a peaceful place, listening to the birds and watching the dogs jump in the river while their owner yells at them and worries about the interior of the car when they get back haha! I just wish i had been having a much healthier day to enjoy the walking bit as well.
When we got back from there i think i slept some more. I honestly think thats all i did was sleep and hold everyone up when we tried to go out. I felt so bad i ended up just sending the other three out to the places they wanted to go without me while i stayed home and rested and thats all i felt i could do :( I wouldnt have minded if i had been at home, but this was a break away we had planned for id say about a month and it was totally ruined for me from day 1!
I dont think it helped my breathing with the fact that my sister has a Gerbil and 3 Hamsters in the living room, plus a rather fluffy cat, and the cats litter tray although in another room down the hall smelt to high hell. Either way its put me off wanting another Hamster anymore. Ill stick with my little fish :)
Weve been home a few days now and the sunshine has been helping me feel a bit better. My chest is still awful and so full up and thick. Its keeping me up at night and making things very hard in the mornings again, mums back to washing my hair for me, and im back to having a bath or sit down shower coz i just cannot stand for long periods. Going out for now just panics me due to the fact i know i will feel like im sufforcating when walking and the pain in my chest i get. Me and mum have talked a lot recently, even before we went away about getting me a wheelchair for those really bad days so we can still go out. Now were talking about making it a permanent thing we take me out in until im back on my feet properly again - if i can go up again that is - were going to speak to my cf team on Tuesday at clinic and see what they say about if they can provide me with one or whatever.
I wanted to ask on Facebook about CF people and wheelchair useage, but no one ever answers my questions on there so i give up. But someone might see it on here possibly...
I was just wondering if any one does use one and how did they come about getting theirs, did they buy it themselves, did they even speak to their team? Some knowledge would be good :)
Me and mum went to see my sister and brother in law recently. They have just moved into a caravan on some holiday park in Northampton. We caught the train quite early last friday and had to change at Didcot parkway to get to Oxford where they were meeting us with the car to drive the rest of the way there, otherwise we would have to go all the way up the country to come all the way back down and it was just stupid!
I managed okay in the morning, id been doing well with getting up and getting sorted recently and that morning was not much different. We got to didcot fine, but then i had to tackle the dam stairs!! Steep for me wasnt the word!! I had to stop lots of times, then we realised we were on the wrong platform and so i had to go all the way back down, along and up more stairs to get the right train! I was knackered :(
Eventually we got to Oxford and i felt like crap! I was cold, i was shaky, i was not myself at all and i couldnt stomach any food either. I tried to walk around the Primark we found in the town but it just wasnt happening at all for me. We got some lunch at BHS but i couldnt even manage to eat any jelly :( i had a pepsi which i realised was the wrong thing as its a cold drink, so mum got me a hot chocolate which after i burnt my tounge on (traditional with me and hot chocolate) warmed me up just lovely! We got back to my sisters and i just pretty much remember sleeping from then on, i know i had a raging migraine, so the Anadin i took knocked me out for that. I dont think i really made much of an appearance until the morning!
Much of my stay at my sisters was spent feeling incredibly ill, cold, shaky, racing heart, very hard to breath which only got worse as the week went on. Theres a place called Salcey Forest, and you can go walking in the forests they have there on the routes set out and they have it set up so you can walk literally amoung the treetops! I saw mums pics on her camera and its pretty beautiful up there. Unfortunately just the walk to the "rigging in the trees" pretty much killed me and my body refused to let me go on. It put me into a right horrid mood. Dont get me wrong i did enjoy the area and being in such a peaceful place, listening to the birds and watching the dogs jump in the river while their owner yells at them and worries about the interior of the car when they get back haha! I just wish i had been having a much healthier day to enjoy the walking bit as well.
When we got back from there i think i slept some more. I honestly think thats all i did was sleep and hold everyone up when we tried to go out. I felt so bad i ended up just sending the other three out to the places they wanted to go without me while i stayed home and rested and thats all i felt i could do :( I wouldnt have minded if i had been at home, but this was a break away we had planned for id say about a month and it was totally ruined for me from day 1!
I dont think it helped my breathing with the fact that my sister has a Gerbil and 3 Hamsters in the living room, plus a rather fluffy cat, and the cats litter tray although in another room down the hall smelt to high hell. Either way its put me off wanting another Hamster anymore. Ill stick with my little fish :)
Weve been home a few days now and the sunshine has been helping me feel a bit better. My chest is still awful and so full up and thick. Its keeping me up at night and making things very hard in the mornings again, mums back to washing my hair for me, and im back to having a bath or sit down shower coz i just cannot stand for long periods. Going out for now just panics me due to the fact i know i will feel like im sufforcating when walking and the pain in my chest i get. Me and mum have talked a lot recently, even before we went away about getting me a wheelchair for those really bad days so we can still go out. Now were talking about making it a permanent thing we take me out in until im back on my feet properly again - if i can go up again that is - were going to speak to my cf team on Tuesday at clinic and see what they say about if they can provide me with one or whatever.
I wanted to ask on Facebook about CF people and wheelchair useage, but no one ever answers my questions on there so i give up. But someone might see it on here possibly...
I was just wondering if any one does use one and how did they come about getting theirs, did they buy it themselves, did they even speak to their team? Some knowledge would be good :)
Tuesday 29 March 2011
Future...
I was going to blog yesterday as i was in a really crap place for most of the day, but i just didn't know what to write really.
I felt awful and so that in turn affects the emotions and everything. I saw pretty much everything in a negative way yesterday. I managed to actually shower and wash my hair, though it took me forever. Then when it came to trying to comb my hair and dry it i just was so out of breath it made me so angry i had a threw my comb across my desk, and had a few mins of angry tears. Honestly i felt a bit better after that cry, although totally out of breath lol...
After that things started to get a little bit better, i did a mucoclear and cleared a great deal, which made it a bit easier to breath and move and it also settled my super racing heart a bit as well, which was a relief as that just get so uncomfy after about 5mins!
I managed to sort my hair out finally as well. I didn't manage to have lunch yesterday and so my planned sausage sandwich went out the window as i just couldn't manage going downstairs, so i didn't have a massively good day yesterday.
But today is, i was going to say a little better, but its actually a lot better really. Ive had breakfast, and felt better for breathing today, I'm still really full in my lungs and I'm clearing a lot just from a simple cough, which at the moment I'm seeing as good rather than "oh no another infection" as its better out than in!
Ive actually managed to have lunch today! Its just a simple sandwich, and it took me a while to make it as i struggle to stand for a while, and i couldn't cut the cheese properly but i got there and felt proud for making myself a sandwich! Which seems really stupid in writing but i did it, and so that's what matters to me :)
Ive taken all my pills so far for today which doesnt always happen, and im about to do a neb after ive done this blog.
Today i was supposed to be having my PEG procedure, but its cancelled. Mostly i cancelled it, as i was meant to go into hospital for a few days IVs before the procedure, but they had a massive bed shuffle round due to nora virus breakout and so my bed got cancelled. They neglected to ring and tell me this until i was literally half way there on the train with all my stuff!
So we turnt around and went home after an impromtu visit to my great aunts for a cup of tea and some cake :p when we got home mum rang the team who said they knew nothing about it, considering it was my dietician who rang and told me to go home i was annoyed at this lack of them being told!
So we tried admissions to see what would happen now, as my PEG was all booked in for today, they said at first they would try and get me in for Monday, then they said they will send a new date out for me, then they said they will try and get me in for the end of the week!! Nobody knew a thing of what was happening, so i told them to cancel the whole thing and not bother.
Mum rang the team on Monday and spoke to them and the dietician (the one i like as well which made it easier!) rang me back and i explained to her that unless it could be done on the 29th i cant do it until June time then. I said that im going away to see my sister on the 15th April and then when i come back ill be studying for my exams which start at the beginning of May, and these are my final year exams so need my absolute full attention! She thankfully understood this and said that if the PEG procedure cant fit into my lifestyle until June then that is fine as it wasnt an emergency (which made me laugh as thats not the impression the other horrible dietician made it to be, which explains why i felt so much pressure 'coz she was blowing everything out of proportion!).
So im just maintaining my weight now and if i can gaining some which will be great! I would love it, if come June time ive gained enough weight on my own that i dont even need the PEG anymore! Me and mum are making a lot of changes to my diet, so if anyone has any top tips that would be great :)
Its a hell of a lot of pressure off my shoulders and i slept better last night knowing that its postponed for now and i dont need to think about it for now! It was really messing up my mind.
Anyway im looking forward to two things now for April, one is some time away with mum seeing my sister and her hubby, and the other is my first night out with my old college lads i studied with towards the end of April! Im so looking forward to it, as ive not been out for absolutely ages!! But im determinded to be healthy enough to go out! Even if i dont stay out till 3am and get totally drunk, i dont care ill be out and having fun and actually socialising with real people!!
Can you tell im excited? :D
I felt awful and so that in turn affects the emotions and everything. I saw pretty much everything in a negative way yesterday. I managed to actually shower and wash my hair, though it took me forever. Then when it came to trying to comb my hair and dry it i just was so out of breath it made me so angry i had a threw my comb across my desk, and had a few mins of angry tears. Honestly i felt a bit better after that cry, although totally out of breath lol...
After that things started to get a little bit better, i did a mucoclear and cleared a great deal, which made it a bit easier to breath and move and it also settled my super racing heart a bit as well, which was a relief as that just get so uncomfy after about 5mins!
I managed to sort my hair out finally as well. I didn't manage to have lunch yesterday and so my planned sausage sandwich went out the window as i just couldn't manage going downstairs, so i didn't have a massively good day yesterday.
But today is, i was going to say a little better, but its actually a lot better really. Ive had breakfast, and felt better for breathing today, I'm still really full in my lungs and I'm clearing a lot just from a simple cough, which at the moment I'm seeing as good rather than "oh no another infection" as its better out than in!
Ive actually managed to have lunch today! Its just a simple sandwich, and it took me a while to make it as i struggle to stand for a while, and i couldn't cut the cheese properly but i got there and felt proud for making myself a sandwich! Which seems really stupid in writing but i did it, and so that's what matters to me :)
Ive taken all my pills so far for today which doesnt always happen, and im about to do a neb after ive done this blog.
Today i was supposed to be having my PEG procedure, but its cancelled. Mostly i cancelled it, as i was meant to go into hospital for a few days IVs before the procedure, but they had a massive bed shuffle round due to nora virus breakout and so my bed got cancelled. They neglected to ring and tell me this until i was literally half way there on the train with all my stuff!
So we turnt around and went home after an impromtu visit to my great aunts for a cup of tea and some cake :p when we got home mum rang the team who said they knew nothing about it, considering it was my dietician who rang and told me to go home i was annoyed at this lack of them being told!
So we tried admissions to see what would happen now, as my PEG was all booked in for today, they said at first they would try and get me in for Monday, then they said they will send a new date out for me, then they said they will try and get me in for the end of the week!! Nobody knew a thing of what was happening, so i told them to cancel the whole thing and not bother.
Mum rang the team on Monday and spoke to them and the dietician (the one i like as well which made it easier!) rang me back and i explained to her that unless it could be done on the 29th i cant do it until June time then. I said that im going away to see my sister on the 15th April and then when i come back ill be studying for my exams which start at the beginning of May, and these are my final year exams so need my absolute full attention! She thankfully understood this and said that if the PEG procedure cant fit into my lifestyle until June then that is fine as it wasnt an emergency (which made me laugh as thats not the impression the other horrible dietician made it to be, which explains why i felt so much pressure 'coz she was blowing everything out of proportion!).
So im just maintaining my weight now and if i can gaining some which will be great! I would love it, if come June time ive gained enough weight on my own that i dont even need the PEG anymore! Me and mum are making a lot of changes to my diet, so if anyone has any top tips that would be great :)
Its a hell of a lot of pressure off my shoulders and i slept better last night knowing that its postponed for now and i dont need to think about it for now! It was really messing up my mind.
Anyway im looking forward to two things now for April, one is some time away with mum seeing my sister and her hubby, and the other is my first night out with my old college lads i studied with towards the end of April! Im so looking forward to it, as ive not been out for absolutely ages!! But im determinded to be healthy enough to go out! Even if i dont stay out till 3am and get totally drunk, i dont care ill be out and having fun and actually socialising with real people!!
Can you tell im excited? :D
Tuesday 22 March 2011
PEG
As some people know i am getting my PEG put in on the 29th and i am bricking it about the procedure!
I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!
So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.
So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.
I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!
So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.
So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.
Thursday 10 March 2011
Just stuff...
I'm feeling a bit crabby today so you'll just have to bare with this blog post.
Its my 22nd Birthday 2morro! At least this year I'm not coming out of hospital a day before it, but I'm still not well for it really. So its just the same as last year.
I'm really fed up with a few things right now. Namely that I'm alone. Completely. Yes I've got my mum and my best friend Emily (who I'm so so looking forward to her coming home from placement in a few months from France!!) but they are there for me in other ways. I'm sick of being on my own now.
Every where i go i see people being able to get on with their life's and to not have to plan for how they might be feeling tomorrow or that evening before they can even make any plans for something to do. I see people in relationships and i hate that the most at the moment because its one thing i most wish for right now, for me to meet someone that's nice for a change and who i get along with, and who doesn't come with a history like some of my previous boyfriends. I understand they will still have a history i don't mind that as long as its not like the history's of my past bf's, which I'm not going to go into on here as it doesn't need to be known.
But i don't see any way I'm going to meet anyone to be honest. I know zero people around here. Don't get me wrong i love living where i live, but i just wish i had friends! Friends who would come and see me at home when I'm too sick to go out myself, friends who would go for a meal with me randomly just for some laughs after a rough day. Friends who would ring/text me gossip and to see how I'm doing or just tell me how they are in reply to my messages and things like that!!
Emily is that friend for me and more of a friend than the standard if that makes sense, but shes in France atm, and then we wont be living with each other anymore, and then shes finishing Uni and not sure whats happening after that, anything could really.
I want friends who i can go out for some drinks with, and go dancing when I'm too drunk too care how bad it is haha. For me these friends only seem to exist in my head or in fictional programs and books. Much the same as men.
I feel like I'm the outsider looking in through the window at everyone else being able to get on with their lives, find partners, and friends and going through those "stages" of life that are expected.
I want to get married and have kids eventually, but i honestly just cant see it happening if i cant even find anyone. I feel like the reject at the bottom of the pile. Ive seen guys look at me and smile, and then ill cough and cough and not stop and it must look horrific coz hes not looking nicely at me anymore. Theres either that horrid pity look or that disgusted look. Though admittedly i do prefer the disgusted look over the pitying look. I want a partner, not a nurse.
Birthday will be spend much the same as every other day. Bored, fed up and sick.
Immense. Fun.
Sorry this has been a crap post. I'm in the mood to write and vent, and i guess this is what came out today. Just really down...
Its my 22nd Birthday 2morro! At least this year I'm not coming out of hospital a day before it, but I'm still not well for it really. So its just the same as last year.
I'm really fed up with a few things right now. Namely that I'm alone. Completely. Yes I've got my mum and my best friend Emily (who I'm so so looking forward to her coming home from placement in a few months from France!!) but they are there for me in other ways. I'm sick of being on my own now.
Every where i go i see people being able to get on with their life's and to not have to plan for how they might be feeling tomorrow or that evening before they can even make any plans for something to do. I see people in relationships and i hate that the most at the moment because its one thing i most wish for right now, for me to meet someone that's nice for a change and who i get along with, and who doesn't come with a history like some of my previous boyfriends. I understand they will still have a history i don't mind that as long as its not like the history's of my past bf's, which I'm not going to go into on here as it doesn't need to be known.
But i don't see any way I'm going to meet anyone to be honest. I know zero people around here. Don't get me wrong i love living where i live, but i just wish i had friends! Friends who would come and see me at home when I'm too sick to go out myself, friends who would go for a meal with me randomly just for some laughs after a rough day. Friends who would ring/text me gossip and to see how I'm doing or just tell me how they are in reply to my messages and things like that!!
Emily is that friend for me and more of a friend than the standard if that makes sense, but shes in France atm, and then we wont be living with each other anymore, and then shes finishing Uni and not sure whats happening after that, anything could really.
I want friends who i can go out for some drinks with, and go dancing when I'm too drunk too care how bad it is haha. For me these friends only seem to exist in my head or in fictional programs and books. Much the same as men.
I feel like I'm the outsider looking in through the window at everyone else being able to get on with their lives, find partners, and friends and going through those "stages" of life that are expected.
I want to get married and have kids eventually, but i honestly just cant see it happening if i cant even find anyone. I feel like the reject at the bottom of the pile. Ive seen guys look at me and smile, and then ill cough and cough and not stop and it must look horrific coz hes not looking nicely at me anymore. Theres either that horrid pity look or that disgusted look. Though admittedly i do prefer the disgusted look over the pitying look. I want a partner, not a nurse.
Birthday will be spend much the same as every other day. Bored, fed up and sick.
Immense. Fun.
Sorry this has been a crap post. I'm in the mood to write and vent, and i guess this is what came out today. Just really down...
Tuesday 1 March 2011
Been a while...
So!! Its been a while since I've made a posting!
Things have been quite difficult for me lately and so I've been pretty much disconnected from everything and I'm now just managing to be able to think about starting to get back on track...
In December i had an infection that was my worst one i had ever had, i was in hospital for a few days as i had 2 episodes of coughing up blood for the first time ever and then i continued on home IVs which i had already started previous to going into hospital. It seemed like i got better, some things picked up i started to get a little bit of energy back and some of my appetite. Bits and pieces like that which indicate to us CFers that generally something is starting to go right for a change and that were going to start getting better.
I went back to the gym, i went back to Uni, i started to put my "life" shoes back on again. I think that's where i went wrong, i went back into things too quickly after being so unwell and just didn't give myself time to rest properly. Hindsight's a bitch sometimes!
So i ended up getting ill again, i had the same feelings as in December, things started to show they were in decline again, my energy disappeared, my appetite diminished. I got very low again and spent a lot of time either slouched on the sofa or throwing up in the bathroom. Not impressive.
So after trying to go it alone again 'coz I'm stubborn, i called the hospital and told them everything that had been happening. I don't think they were impressed i had waited so long to ring them, but they know I'm a stubborn cow sometimes. They put me on the priority list for a bed and within 2 days i was in hospital and being pumped full of lovely IVs, paracetamol, ibuprofen. Luckily i didn't have any bleeds this time, but i think that was because of a few factors, namely that my chest had dried up like a desert but i could feel that it was full of it, as i was wheezing like mad for the first time in years! Not even my inhaler would relive it.
I was hitting temps of around 40 and i had god knows how many blood cultures done when in hospital, i had 3 ECGs, 2 in one day as my heart was beating so fast it was really uncomfortable sometimes. I had to stop moving around so much and just rest on nurses orders to help try and settle my heart rate and also to get my pulse rate down as well. I went on oxygen again to being my sats up and had my obs done every hour for the first 2 days i was in there. Needless to say my mood from total lack of sleep was not pretty.
Mum came down on the first weekend i was in there and i argued with the nurse about being allowed to go down into town for a little bit and get some real fresh air and real edible food for lunch! I think she thought i was going to escape home, but there was no way i could look after myself while mum was at work. So begrudgingly i did admit to myself that i was in the best place, even if the food did look like the cat had coughed it up sometimes! Thank god for the £6 i spent on my massive bag of pick n mix :p
Eventually i won the argument with the nurse and she let me go, but made it clear she wasn't happy about it. I think what won it was that she said she has to ring the on call Dr to see if i can go out and i said that even if they said no, i would still go out anyway!
So i had breakfast - a lovely fry up, and a KFC for lunch! It had to have been the best day i had had for a few. Although it totally knackered me out after i got back to my room, i was so pleased i had managed better walking and was thankful for the change of scene and fresh air. Sometimes i don't think some nurses get that its depressing after a while being on your own, looking at the same four walls alllll the time!
Another reason i hate being in hospital is that it is always a clear reminder of how alone i actually am and feel right now. I have no friends who come to visit me, and next to no family come to visit me. I have no get well cards sent to me from friends and family, i have no Internet so feel totally disconnected.
Thankfully i have my amazing mum and my best friend Emily. Although my mum can only get to visit me on Saturdays, its the best ever when i see her! It doesn't matter that I'm pretty much always on the phone to her when in there (thanks Orange for magic numbers and my free mins :p ) seeing her is totally different as i can actually get that much needed hug and get to slap a real smile on my face!! :D I know that if it wasn't for work, and the extortionate fees for public transport she would come and see me everyday. I just hope she knows that i do fully understand that.
My best friend would come and visit me i know that, but at the moment shes on her Uni placement in France and so obviously cant, which i know pisses her off as she knows that no other friends bother to visit me. They have their excuses of not liking hospitals, or that they are too busy, then i see on facebook they are moaning they are bored. Yeah cheers for that guys.
My family are the worst. They don't understand CF and the extent of the damage it does to someone, physically, emotionally and mentally. Not just to the person who has to suffer with it, but their parent(s) and sibling(s) as well. My aunt totally pissed my mum off. We were trying to arrange transport for me to be able to be discharged on home IVs. Taking all the meds which is usually two large carrier bags, a huge sharps bin with all the syringes, needles etc inside and my stuff i took into hospital is not ideal to take on a train journey home! So we asked my Aunty if she could pick me up and take me home. She said she couldn't do it, fair enough at least we tried. I then saw the next day on facebook, when i was being discharged that she was in Bristol, down in the town not a 20min walk from the hospital i was in!! Shopping. Of all things, for the birthday party of my other Aunty that we hadn't been told about or invited to. Granted its more than likely we couldn't have gone but it would have been nice being family members to have gotten an invite! Is that selfish of me to think that??
As i wasn't being discharged until about 5pm she could have gotten in her shopping day and then come and collected me. She has a large car so its not like shopping bags would have taken up room. It really angered my mum, more because my aunt is always saying if theres anything she can do to help let her know. Yet every time we ask she always says no, cant do it. Theres always some excuse which isn't always true. So were not bothering to ask her anymore, for anything.
It pissed me off as well, but it upset me as well as it felt like she was saying that she doesn't care about her niece or her sister (my mum) enough to just do this small thing for them that would help them out hugely. Yet she goes to see my cousin right around the corner from me who has cancer whenever she can! I think its because she doesn't understand CF and doesn't see or get how bad it is/can get for me. I don't think she gets that it can kill me, just as much as cancer can kill people. Cancer everyone understands, you can see the devastating affects of that horrid disease. You cant see the devastating affects of CF. People think naively that as the person is up and walking around themselves that theres nothing wrong with them.
I had my annual review yesterday, which didnt show up no surprises really as i had already been spending so long at the hospital. Basically the annual review showed that im worse than last year and still struggling.
Im having my PEG put in on the 29th March and ill go in a few days before that for some IVs again to make sure my lungs are in as good a condition they can be for dealing with an anesthetic, even if it is a local one and sedation. Then for a few days afterwards ill be trained how to do home feeding via my new tube and then be allowed to go home again. I swear they should make me a permanent bed for me there lately :|
Hopefully that will gain me the weight i need to battle these infections i keep getting. If i can have a better summer than last year health wise itll be a start!
Anyway i think this post is long enough now!
Hope peoples are well!!
Things have been quite difficult for me lately and so I've been pretty much disconnected from everything and I'm now just managing to be able to think about starting to get back on track...
In December i had an infection that was my worst one i had ever had, i was in hospital for a few days as i had 2 episodes of coughing up blood for the first time ever and then i continued on home IVs which i had already started previous to going into hospital. It seemed like i got better, some things picked up i started to get a little bit of energy back and some of my appetite. Bits and pieces like that which indicate to us CFers that generally something is starting to go right for a change and that were going to start getting better.
I went back to the gym, i went back to Uni, i started to put my "life" shoes back on again. I think that's where i went wrong, i went back into things too quickly after being so unwell and just didn't give myself time to rest properly. Hindsight's a bitch sometimes!
So i ended up getting ill again, i had the same feelings as in December, things started to show they were in decline again, my energy disappeared, my appetite diminished. I got very low again and spent a lot of time either slouched on the sofa or throwing up in the bathroom. Not impressive.
So after trying to go it alone again 'coz I'm stubborn, i called the hospital and told them everything that had been happening. I don't think they were impressed i had waited so long to ring them, but they know I'm a stubborn cow sometimes. They put me on the priority list for a bed and within 2 days i was in hospital and being pumped full of lovely IVs, paracetamol, ibuprofen. Luckily i didn't have any bleeds this time, but i think that was because of a few factors, namely that my chest had dried up like a desert but i could feel that it was full of it, as i was wheezing like mad for the first time in years! Not even my inhaler would relive it.
I was hitting temps of around 40 and i had god knows how many blood cultures done when in hospital, i had 3 ECGs, 2 in one day as my heart was beating so fast it was really uncomfortable sometimes. I had to stop moving around so much and just rest on nurses orders to help try and settle my heart rate and also to get my pulse rate down as well. I went on oxygen again to being my sats up and had my obs done every hour for the first 2 days i was in there. Needless to say my mood from total lack of sleep was not pretty.
Mum came down on the first weekend i was in there and i argued with the nurse about being allowed to go down into town for a little bit and get some real fresh air and real edible food for lunch! I think she thought i was going to escape home, but there was no way i could look after myself while mum was at work. So begrudgingly i did admit to myself that i was in the best place, even if the food did look like the cat had coughed it up sometimes! Thank god for the £6 i spent on my massive bag of pick n mix :p
Eventually i won the argument with the nurse and she let me go, but made it clear she wasn't happy about it. I think what won it was that she said she has to ring the on call Dr to see if i can go out and i said that even if they said no, i would still go out anyway!
So i had breakfast - a lovely fry up, and a KFC for lunch! It had to have been the best day i had had for a few. Although it totally knackered me out after i got back to my room, i was so pleased i had managed better walking and was thankful for the change of scene and fresh air. Sometimes i don't think some nurses get that its depressing after a while being on your own, looking at the same four walls alllll the time!
Another reason i hate being in hospital is that it is always a clear reminder of how alone i actually am and feel right now. I have no friends who come to visit me, and next to no family come to visit me. I have no get well cards sent to me from friends and family, i have no Internet so feel totally disconnected.
Thankfully i have my amazing mum and my best friend Emily. Although my mum can only get to visit me on Saturdays, its the best ever when i see her! It doesn't matter that I'm pretty much always on the phone to her when in there (thanks Orange for magic numbers and my free mins :p ) seeing her is totally different as i can actually get that much needed hug and get to slap a real smile on my face!! :D I know that if it wasn't for work, and the extortionate fees for public transport she would come and see me everyday. I just hope she knows that i do fully understand that.
My best friend would come and visit me i know that, but at the moment shes on her Uni placement in France and so obviously cant, which i know pisses her off as she knows that no other friends bother to visit me. They have their excuses of not liking hospitals, or that they are too busy, then i see on facebook they are moaning they are bored. Yeah cheers for that guys.
My family are the worst. They don't understand CF and the extent of the damage it does to someone, physically, emotionally and mentally. Not just to the person who has to suffer with it, but their parent(s) and sibling(s) as well. My aunt totally pissed my mum off. We were trying to arrange transport for me to be able to be discharged on home IVs. Taking all the meds which is usually two large carrier bags, a huge sharps bin with all the syringes, needles etc inside and my stuff i took into hospital is not ideal to take on a train journey home! So we asked my Aunty if she could pick me up and take me home. She said she couldn't do it, fair enough at least we tried. I then saw the next day on facebook, when i was being discharged that she was in Bristol, down in the town not a 20min walk from the hospital i was in!! Shopping. Of all things, for the birthday party of my other Aunty that we hadn't been told about or invited to. Granted its more than likely we couldn't have gone but it would have been nice being family members to have gotten an invite! Is that selfish of me to think that??
As i wasn't being discharged until about 5pm she could have gotten in her shopping day and then come and collected me. She has a large car so its not like shopping bags would have taken up room. It really angered my mum, more because my aunt is always saying if theres anything she can do to help let her know. Yet every time we ask she always says no, cant do it. Theres always some excuse which isn't always true. So were not bothering to ask her anymore, for anything.
It pissed me off as well, but it upset me as well as it felt like she was saying that she doesn't care about her niece or her sister (my mum) enough to just do this small thing for them that would help them out hugely. Yet she goes to see my cousin right around the corner from me who has cancer whenever she can! I think its because she doesn't understand CF and doesn't see or get how bad it is/can get for me. I don't think she gets that it can kill me, just as much as cancer can kill people. Cancer everyone understands, you can see the devastating affects of that horrid disease. You cant see the devastating affects of CF. People think naively that as the person is up and walking around themselves that theres nothing wrong with them.
I had my annual review yesterday, which didnt show up no surprises really as i had already been spending so long at the hospital. Basically the annual review showed that im worse than last year and still struggling.
Im having my PEG put in on the 29th March and ill go in a few days before that for some IVs again to make sure my lungs are in as good a condition they can be for dealing with an anesthetic, even if it is a local one and sedation. Then for a few days afterwards ill be trained how to do home feeding via my new tube and then be allowed to go home again. I swear they should make me a permanent bed for me there lately :|
Hopefully that will gain me the weight i need to battle these infections i keep getting. If i can have a better summer than last year health wise itll be a start!
Anyway i think this post is long enough now!
Hope peoples are well!!
Sunday 23 January 2011
Daily Trials
So I'm still not much better. I mentioned in my last post about the terrifying possibility of needing a PEG soon as i cant keep weight on if i can manage to gain it at all that is.
I was feeling optimistic about the fact that i might not need it as i was feeling like my eating was starting to pick up a bit each day. But the past like week maybe, those optimistic thoughts have been diminishing daily. Although I've been trying my utmost hardest to eat and eat little and often as having the regular large meals and snacks in between wasn't working for me. But i keep throwing up :(
Sometimes its because I've coughed too hard and too much as i couldn't catch my breath in the morning when i first wake up, sometimes its just random and just happens. Its usually those times that are the worst and most violent :(
I couldn't sleep the other night as all i was thinking about was this stupid PEG. They say things come in threes. The first was my port, indicating to me that my veins are rubbish now and there's a future waiting for me containing more IVs. Now the second is a PEG... what the hells next?! I hate to think.
I feel incredibly frustrated about everything that's happening. Its like I've lost control of my own body and i hate it. Its quite scary sometimes really. I don't feel like theres much point telling the team any of this because A. they wouldn't actually get it as much as they write things down and say "yes i understand" they just don't get the emotional part of living with a debilitating disease that sucks the life out of you some days that all you feel you can do is sit there and just cry and cry. and B. There isn't anything they can do about this, so whats the point in telling them? ...
I wish more than anything now that i didn't have to do Uni. I just don't have the stamina left for it anymore. One day at uni and I'm shattered i can sleep for 2 days! And with some assignments due and some waiting to be set doesn't help get my stress level down. The Uni don't help much with regards to things like extensions as they don't offer them no matter the circumstance. If you were in a coma and had an assignment due in before you went into said coma, they would fail you for not having for seen said coma and handed in the work early, and charge you £50 to resit and cap you at 40% . That's how helpful the Uni are.
I tried to have a nice normal day out shopping with mum yesterday and i felt fine when i woke up, managed to take a shower and was a bit knackered out after that, but still managed to do my physio and have breakfast. Felt fine on the train to Bristol, and then when i got there started to feel a bit sick. Thought i was just a bit thirsty so we went for a coffee first, i had a lemonade as that usually helps to combat sickness feeling for me. But it didn't work and as the day wore on i felt progressively worse and more strangled for breath when walking. I had to keep sitting down in the shops while i told mum to go have a look and ill catch up with her. By the time i caught up she was finished and i wasn't in the mood to have a look for myself. I thought maybe i was just hungry and so we went for lunch at a place we love called Bella Italia. Got a pasta dish i know i like and shared it with mum. Barely managed 3 forkfuls of food, before i went to the toilets and promptly threw up everything from breakfast to right then. Although i felt a bit better, i was then incredibly hungry but still unable to eat anything and had a very sore stomach and throat :( Paid up at lunch and i tried some more shops as i didn't want to ruin mums first weekend out in a long time any more than i already had. I managed about another 3 shops maybe and couldn't go on and so we went home early.
I still feel bad about it now the next day even though i know we can always go back and finish the shops we didn't get to another weekend, but that's not the point for me.
I'm just so fed up with pretty much everything right now. Plus with Annual Review as my next appointment now i don't think things will be getting much better. In my opinion even if i do manage to put weight on it wont show at the appointment 'coz i have to starve myself for them stupid blood tests and if it does show its gone up it still wont be enough for them to piss off and leave me alone.
I was feeling optimistic about the fact that i might not need it as i was feeling like my eating was starting to pick up a bit each day. But the past like week maybe, those optimistic thoughts have been diminishing daily. Although I've been trying my utmost hardest to eat and eat little and often as having the regular large meals and snacks in between wasn't working for me. But i keep throwing up :(
Sometimes its because I've coughed too hard and too much as i couldn't catch my breath in the morning when i first wake up, sometimes its just random and just happens. Its usually those times that are the worst and most violent :(
I couldn't sleep the other night as all i was thinking about was this stupid PEG. They say things come in threes. The first was my port, indicating to me that my veins are rubbish now and there's a future waiting for me containing more IVs. Now the second is a PEG... what the hells next?! I hate to think.
I feel incredibly frustrated about everything that's happening. Its like I've lost control of my own body and i hate it. Its quite scary sometimes really. I don't feel like theres much point telling the team any of this because A. they wouldn't actually get it as much as they write things down and say "yes i understand" they just don't get the emotional part of living with a debilitating disease that sucks the life out of you some days that all you feel you can do is sit there and just cry and cry. and B. There isn't anything they can do about this, so whats the point in telling them? ...
I wish more than anything now that i didn't have to do Uni. I just don't have the stamina left for it anymore. One day at uni and I'm shattered i can sleep for 2 days! And with some assignments due and some waiting to be set doesn't help get my stress level down. The Uni don't help much with regards to things like extensions as they don't offer them no matter the circumstance. If you were in a coma and had an assignment due in before you went into said coma, they would fail you for not having for seen said coma and handed in the work early, and charge you £50 to resit and cap you at 40% . That's how helpful the Uni are.
I tried to have a nice normal day out shopping with mum yesterday and i felt fine when i woke up, managed to take a shower and was a bit knackered out after that, but still managed to do my physio and have breakfast. Felt fine on the train to Bristol, and then when i got there started to feel a bit sick. Thought i was just a bit thirsty so we went for a coffee first, i had a lemonade as that usually helps to combat sickness feeling for me. But it didn't work and as the day wore on i felt progressively worse and more strangled for breath when walking. I had to keep sitting down in the shops while i told mum to go have a look and ill catch up with her. By the time i caught up she was finished and i wasn't in the mood to have a look for myself. I thought maybe i was just hungry and so we went for lunch at a place we love called Bella Italia. Got a pasta dish i know i like and shared it with mum. Barely managed 3 forkfuls of food, before i went to the toilets and promptly threw up everything from breakfast to right then. Although i felt a bit better, i was then incredibly hungry but still unable to eat anything and had a very sore stomach and throat :( Paid up at lunch and i tried some more shops as i didn't want to ruin mums first weekend out in a long time any more than i already had. I managed about another 3 shops maybe and couldn't go on and so we went home early.
I still feel bad about it now the next day even though i know we can always go back and finish the shops we didn't get to another weekend, but that's not the point for me.
I'm just so fed up with pretty much everything right now. Plus with Annual Review as my next appointment now i don't think things will be getting much better. In my opinion even if i do manage to put weight on it wont show at the appointment 'coz i have to starve myself for them stupid blood tests and if it does show its gone up it still wont be enough for them to piss off and leave me alone.
Tuesday 18 January 2011
Weight
I had an appointment recently and things are good and bad really. For once my efforts have been paying off and I've gone from 38% lung function up to 45%. Which still isn't the best, but its heading in the direction i need it to go, so ill take it for now and just work a bit harder to get it further increased.
Weight is a huge problem for me right now. Its getting me quite low and really frustrated. I cant seem to gain any weight on my own. I'm about 46kg right now and the dietician keeps going on about how I'm so underweight. Doesn't she think i know that!! I'm not that keen on my dietician especially after that remark she made once about being able to teach anatomy with my arms 'coz they are so skinny.
Ive been given 6 weeks until my next appointment and if I've not gained weight enough for them to be remotely happy then I'm in serious discussions about getting a PEG. This i really obviously do not want!!
Its just extremely frustrating beyond words, that I'm eating and eating and its just not sticking to me at all. I'm even making myself drink my Ensure+ shakes again and I'm trying to use Maxijul powder again in my drinks and things like cup a soups i have at lunch time. I had to give a full rendition of what id eaten for the past week to the dietician which pisses me off when i have to do that, as even if I've sat and eaten like 6 full on family sized cakes all to myself everyday she still isn't happy with me! I give up with her. I don't listen to her really, just glaze over and think about where id rather be. Its not as if she gives me any advice to listen to anyway!
I had the PEG feed talk every time I've been there for the past like month now, and its really pissing me off that they wont take "no" for an answer. I said i don't want NG feeding coz i just cant handle the thought of it let alone actually having it happen. So they've now moved onto PEG feeding. Which is worse, so god knows where their thinking is that I'm going to say "yes" to this when i already said "no" to NG feeding.
I realise it would help me out greatly and if my weight went up then it would help me out a lot with other things as well. But i just don't think PEG feeding is the way for me to be going yet. Its like an instinct that's telling me i don't need that yet and to stick to my guns about doing this myself. Imagine how pleased ill feel if i can get back to 54kg on my own without interference from another horrid foreign body in me. I understand that some people are just not in a position to say no to such help, and i might well be one of them people one day, i just don't know. But while I've got the chance to do this on my own, and feel my own work and efforts paying off myself then I'm going to take it.
The Dr, as nice and lovely as she is, explained in a better way why they want me to do tube feeding. She said that if I'm ever in the unfortunate position to need a lung transplant, then there is the strict rules to follow for weight amongst other things. Which i fully understand and do comprehend to an extent (without being in such a position i can only understand it to an extent i think) but it almost felt like she was slightly using that what she said as a scare to get me to do tube feeding.
Even if at my next appointment I've gained weight, I'm still going to look into PEG feeding while I've got the chance to ask all i can think of to ask, then if the time comes that i really really do need it, then I've got a lot of info and its not all going to be new to me like now. Perhaps it will terrify me less as well.
Weight is a huge problem for me right now. Its getting me quite low and really frustrated. I cant seem to gain any weight on my own. I'm about 46kg right now and the dietician keeps going on about how I'm so underweight. Doesn't she think i know that!! I'm not that keen on my dietician especially after that remark she made once about being able to teach anatomy with my arms 'coz they are so skinny.
Ive been given 6 weeks until my next appointment and if I've not gained weight enough for them to be remotely happy then I'm in serious discussions about getting a PEG. This i really obviously do not want!!
Its just extremely frustrating beyond words, that I'm eating and eating and its just not sticking to me at all. I'm even making myself drink my Ensure+ shakes again and I'm trying to use Maxijul powder again in my drinks and things like cup a soups i have at lunch time. I had to give a full rendition of what id eaten for the past week to the dietician which pisses me off when i have to do that, as even if I've sat and eaten like 6 full on family sized cakes all to myself everyday she still isn't happy with me! I give up with her. I don't listen to her really, just glaze over and think about where id rather be. Its not as if she gives me any advice to listen to anyway!
I had the PEG feed talk every time I've been there for the past like month now, and its really pissing me off that they wont take "no" for an answer. I said i don't want NG feeding coz i just cant handle the thought of it let alone actually having it happen. So they've now moved onto PEG feeding. Which is worse, so god knows where their thinking is that I'm going to say "yes" to this when i already said "no" to NG feeding.
I realise it would help me out greatly and if my weight went up then it would help me out a lot with other things as well. But i just don't think PEG feeding is the way for me to be going yet. Its like an instinct that's telling me i don't need that yet and to stick to my guns about doing this myself. Imagine how pleased ill feel if i can get back to 54kg on my own without interference from another horrid foreign body in me. I understand that some people are just not in a position to say no to such help, and i might well be one of them people one day, i just don't know. But while I've got the chance to do this on my own, and feel my own work and efforts paying off myself then I'm going to take it.
The Dr, as nice and lovely as she is, explained in a better way why they want me to do tube feeding. She said that if I'm ever in the unfortunate position to need a lung transplant, then there is the strict rules to follow for weight amongst other things. Which i fully understand and do comprehend to an extent (without being in such a position i can only understand it to an extent i think) but it almost felt like she was slightly using that what she said as a scare to get me to do tube feeding.
Even if at my next appointment I've gained weight, I'm still going to look into PEG feeding while I've got the chance to ask all i can think of to ask, then if the time comes that i really really do need it, then I've got a lot of info and its not all going to be new to me like now. Perhaps it will terrify me less as well.
Tuesday 11 January 2011
Never say Never...
Ive been meaning to write a blog for ages now, its just that every time I've loaded the page to write things that are swirling in my head, i cant put them into sentences no matter how hard i sit there and try.
I'm still not totally sure how this post will turn out, but I'm just going to type and see what happens.
My thoughts of late have been pretty much 100% focused on CF. Sounds strange as living with this disease you'd think that i was thinking about CF all the time anyway. But i don't. I try not to anyway, otherwise i just get myself into a right mess in my head and i cant focus on anything. I loose myself, and its not a nice loose myself like when I'm staring at the clouds making pictures, its like i get trapped in my head and I'm surrounded by all these nasty, horrid thoughts and scary possible futures. Its tough to deal with, and tough to get out.
God! i bet i sound like a right mental patient!! But oddly, lately thinking constantly about CF hasn't trapped me in my head this time. Its like i found the window in there and I've been able to open it to allow some of the nicer thoughts in that were stuck outside before. The good realities that could happen instead of the nasty, horrid ones. Don't get me wrong they are all still there, its not like they all floated out the window.... but, well its like they've gotten smaller, less threatening and scary.
Honestly I'm not sure what changed to make them less scary, but I'm glad of it! I feel a tiny bit more free from the grasp of CF. Tiny doesn't sound a lot, but it feels huge to me. Perhaps its because I've been less stressed. I haven't been well AT ALL lately, and I'm only just now feeling like I'm getting to put my feet back on the floor. My toes are touching the floor at least. Usually when i get ill i worry about Uni and about the extra care i need to put into getting better, but still maintaining my coursework (the uni don't give extensions in any circumstances, so its hand something in or fail, submit extenuating circumstances and hope u can resit for free and uncapped at 40% in the summer) and general life. But this time, getting this ill, it put a lot into perspective. I made a pitiful attempt at the coursework i had due in 'coz that was literally all i could handle, a friend kindly handed it all in for me and i handed in my exten circs to resit in the summer before i graduate this year. I didn't get stressed about the coursework once, or worry about handing it in and passing. I just didn't worry at all about anything to do with Uni. I put it all on the back burner and just ignored it. I put all my energies into getting better. Which was and still is very hard.
I don't know what made me change this time around. I had been told how sick i could get and heard stories, seen other CFers put things on their blogs and facebook about things happening to them during infection and i just thought every time, i thought, "ah that wont happen to me 'coz I'm not that bad with infections" I thought naively that all my infections were the same each time. Extra tired, lack of energy, lack of appetite, increased cough etc etc. But this time was totally different, and threw me right out of my naive comfort zone.
I was throwing up constantly, i was coughing so much i couldn't breathe, i was coughing up blood for the first time ever, i had temperatures that made me feel like i was a melting snowman in the blazing sun, my heart felt like it was trying to burst out my chest, i could barely get out of bed for energy, i couldn't eat 'coz i felt so nauseous all the time. There was just no let up at all! I ended up in hospital, my sats were in the low 90's which is totally not normal for me as even during past infections they've not really dropped, and i was put on oxygen for the first time ever. When i thought i would never be on that. I had to have an ECG to make sure my heart wasn't doing anything they couldn't see with the increased numbers, my temperature was sitting at best around 38 at highest it got to 40. I was very ill for my standards. I was also very scared but i wouldn't admit that at the time. My lung function dropped to 38% and my weight down to the low 40's kg...
Its taken a lot for me to get to where i am now. Which still isn't better, not at all really. Sure all my numbers baring weight and LF have improved but its still not good enough. My appetite is coming back slowly, the past 2 days have been good for eating, including eating a cake i made with mum!
I'm trying to best to be compliant with my nebs and meds, but getting back into a routine is proving harder than it has before.
But ill get there. I always do eventually...
I'm still not totally sure how this post will turn out, but I'm just going to type and see what happens.
My thoughts of late have been pretty much 100% focused on CF. Sounds strange as living with this disease you'd think that i was thinking about CF all the time anyway. But i don't. I try not to anyway, otherwise i just get myself into a right mess in my head and i cant focus on anything. I loose myself, and its not a nice loose myself like when I'm staring at the clouds making pictures, its like i get trapped in my head and I'm surrounded by all these nasty, horrid thoughts and scary possible futures. Its tough to deal with, and tough to get out.
God! i bet i sound like a right mental patient!! But oddly, lately thinking constantly about CF hasn't trapped me in my head this time. Its like i found the window in there and I've been able to open it to allow some of the nicer thoughts in that were stuck outside before. The good realities that could happen instead of the nasty, horrid ones. Don't get me wrong they are all still there, its not like they all floated out the window.... but, well its like they've gotten smaller, less threatening and scary.
Honestly I'm not sure what changed to make them less scary, but I'm glad of it! I feel a tiny bit more free from the grasp of CF. Tiny doesn't sound a lot, but it feels huge to me. Perhaps its because I've been less stressed. I haven't been well AT ALL lately, and I'm only just now feeling like I'm getting to put my feet back on the floor. My toes are touching the floor at least. Usually when i get ill i worry about Uni and about the extra care i need to put into getting better, but still maintaining my coursework (the uni don't give extensions in any circumstances, so its hand something in or fail, submit extenuating circumstances and hope u can resit for free and uncapped at 40% in the summer) and general life. But this time, getting this ill, it put a lot into perspective. I made a pitiful attempt at the coursework i had due in 'coz that was literally all i could handle, a friend kindly handed it all in for me and i handed in my exten circs to resit in the summer before i graduate this year. I didn't get stressed about the coursework once, or worry about handing it in and passing. I just didn't worry at all about anything to do with Uni. I put it all on the back burner and just ignored it. I put all my energies into getting better. Which was and still is very hard.
I don't know what made me change this time around. I had been told how sick i could get and heard stories, seen other CFers put things on their blogs and facebook about things happening to them during infection and i just thought every time, i thought, "ah that wont happen to me 'coz I'm not that bad with infections" I thought naively that all my infections were the same each time. Extra tired, lack of energy, lack of appetite, increased cough etc etc. But this time was totally different, and threw me right out of my naive comfort zone.
I was throwing up constantly, i was coughing so much i couldn't breathe, i was coughing up blood for the first time ever, i had temperatures that made me feel like i was a melting snowman in the blazing sun, my heart felt like it was trying to burst out my chest, i could barely get out of bed for energy, i couldn't eat 'coz i felt so nauseous all the time. There was just no let up at all! I ended up in hospital, my sats were in the low 90's which is totally not normal for me as even during past infections they've not really dropped, and i was put on oxygen for the first time ever. When i thought i would never be on that. I had to have an ECG to make sure my heart wasn't doing anything they couldn't see with the increased numbers, my temperature was sitting at best around 38 at highest it got to 40. I was very ill for my standards. I was also very scared but i wouldn't admit that at the time. My lung function dropped to 38% and my weight down to the low 40's kg...
Its taken a lot for me to get to where i am now. Which still isn't better, not at all really. Sure all my numbers baring weight and LF have improved but its still not good enough. My appetite is coming back slowly, the past 2 days have been good for eating, including eating a cake i made with mum!
I'm trying to best to be compliant with my nebs and meds, but getting back into a routine is proving harder than it has before.
But ill get there. I always do eventually...
Subscribe to:
Posts (Atom)
