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!
Saturday, 30 April 2011
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!!
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