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.
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