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.
Showing posts with label coughing. Show all posts
Showing posts with label coughing. Show all posts
Tuesday, 5 July 2011
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
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
Wednesday, 1 December 2010
Feeling pretty rubbish :(
Im feeling so rubbish these past few weeks. I was doing really well months ago, then i got a cold and since then everything has just been pretty crap. And now ive got another cold. Perfect.
Its not as bad as the last one, but its still knocking me for six. Im still doing the gym, im really pushing myself there coz i want all this junk off my chest so i can breath a bit better again! I am doing well at the gym, ive done a bit of everything on my training plan now, a lot of cardio and some weights as well. Which granted im lifting the weight of a feather but that doesnt bother me really as i knew i was pretty weak, plus from all the joint pain i get, ive got lasting effects of it and my wrists are quite weak :| Ah the joys of CF! But its helping me to cough up loads of this crap on my chest, which is good, but its quite bad theres so much down there! :( I feel a round of IV's coming on.
Im so knackered! Im doing gym, and coursework and the occaisional day at Uni, which im usually pretty shattered for by the time i get there as i have to get up quite early, get a train, and then wait in the freezing cold until the bus decides to turn up. So im quite shocked i manage to just about stay awake in the lectures i do manage to get to! Granted gym, coursework and Uni doesnt sound like much to be doing, but when thats all im doing day in day out, it gets tedious and knackering after a while. Especially when you cant switch off at night to sleep properly :(
Coursework at the moment is a total joke. Ive got my digital media project going on which is basically my dissertation, then ive got a consultany project with a real client outside of the Uni with a group of other people. Another assignment that i have to have done for the 9th and ive got NO idea what the hell im doing for it, and another one due in on the 16th which is a series of mini projects ive been doing since like October or something. But the specifications we get for these assignments are made over techinical when theres absolutely no need for that, and then the tutors get all grumpy when so many students ask questions about everything! If they actually put things we needed to know in the spec we wouldnt have to clearly bother them with our queries.
Tomorrow im supposed to be handing in a 3000 word research report and also doing a presentation showing off a prototype of my media project so far. This im not looking forward to, and at this rate im not going to be able to do the presentation, 'coz ive got really bad chest pains and it hurts to breathe, move, cough, sneeze, hiccup, you name it and im practically crying with the pain at some points! It started at the weekend and then went away on tuesday so i was able to do the gym, and today its come back with vengance :( Not happy.
At least ive got hospital on friday, which is good and bad. Last time i went my lung function was down to 45% because of that annoying cold i had gotten last time. Then i think i had gotten some lung function back but now ive got another stupid cold my chest sounds like a car engine that wont start.Whether that has killed my lung function i thought i had gained i dont know, guess well find out on friday! Hopefully i will have gained weight tho, ive been eating mum out of house and home haha! I have noticed my energy has picked up a little bit, which usually only happens with weight gain for me more than a gain in lung function. Though i still dont want to get out of bed in the mornings, but thats only more because its freezing!! haha!
On a more happy note, ive had my hair cut :) It was getting really long which is what i wanted but it was getting unmanagable to wash it and comb it and general care of my hair. So i had it cut to just below my shoulders and styled a bit as well. I'll put a picture up soon, as well as a pic of my new tatt :D I had it done weeks ago, but its not long finished healing so it looks better for a picture now. I always find the smaller tattoos take longer to heal than the large ones ive had done. Weird.
Right better get on with this coursework :|
Its not as bad as the last one, but its still knocking me for six. Im still doing the gym, im really pushing myself there coz i want all this junk off my chest so i can breath a bit better again! I am doing well at the gym, ive done a bit of everything on my training plan now, a lot of cardio and some weights as well. Which granted im lifting the weight of a feather but that doesnt bother me really as i knew i was pretty weak, plus from all the joint pain i get, ive got lasting effects of it and my wrists are quite weak :| Ah the joys of CF! But its helping me to cough up loads of this crap on my chest, which is good, but its quite bad theres so much down there! :( I feel a round of IV's coming on.
Im so knackered! Im doing gym, and coursework and the occaisional day at Uni, which im usually pretty shattered for by the time i get there as i have to get up quite early, get a train, and then wait in the freezing cold until the bus decides to turn up. So im quite shocked i manage to just about stay awake in the lectures i do manage to get to! Granted gym, coursework and Uni doesnt sound like much to be doing, but when thats all im doing day in day out, it gets tedious and knackering after a while. Especially when you cant switch off at night to sleep properly :(
Coursework at the moment is a total joke. Ive got my digital media project going on which is basically my dissertation, then ive got a consultany project with a real client outside of the Uni with a group of other people. Another assignment that i have to have done for the 9th and ive got NO idea what the hell im doing for it, and another one due in on the 16th which is a series of mini projects ive been doing since like October or something. But the specifications we get for these assignments are made over techinical when theres absolutely no need for that, and then the tutors get all grumpy when so many students ask questions about everything! If they actually put things we needed to know in the spec we wouldnt have to clearly bother them with our queries.
Tomorrow im supposed to be handing in a 3000 word research report and also doing a presentation showing off a prototype of my media project so far. This im not looking forward to, and at this rate im not going to be able to do the presentation, 'coz ive got really bad chest pains and it hurts to breathe, move, cough, sneeze, hiccup, you name it and im practically crying with the pain at some points! It started at the weekend and then went away on tuesday so i was able to do the gym, and today its come back with vengance :( Not happy.
At least ive got hospital on friday, which is good and bad. Last time i went my lung function was down to 45% because of that annoying cold i had gotten last time. Then i think i had gotten some lung function back but now ive got another stupid cold my chest sounds like a car engine that wont start.Whether that has killed my lung function i thought i had gained i dont know, guess well find out on friday! Hopefully i will have gained weight tho, ive been eating mum out of house and home haha! I have noticed my energy has picked up a little bit, which usually only happens with weight gain for me more than a gain in lung function. Though i still dont want to get out of bed in the mornings, but thats only more because its freezing!! haha!
On a more happy note, ive had my hair cut :) It was getting really long which is what i wanted but it was getting unmanagable to wash it and comb it and general care of my hair. So i had it cut to just below my shoulders and styled a bit as well. I'll put a picture up soon, as well as a pic of my new tatt :D I had it done weeks ago, but its not long finished healing so it looks better for a picture now. I always find the smaller tattoos take longer to heal than the large ones ive had done. Weird.
Right better get on with this coursework :|
Tuesday, 30 March 2010
Invincibility and Wishes
When i was younger i didnt think about the future, the only thing i thought about future wise was what i could eat next! I miss them days, not having to plan for the next day and the day after. Not having to plan where to fit in a good amount of physio to help me each day, not having to worry about running round like a loon in the garden and having a coughing fit that would reduce me to my knees from gasping for breath.
I miss them days. So simple. Them days of feeling invincible and like i could literally hold the world on my own two shoulders - not in a manner of troubles and concerns way, but in a manner of strength, energy, upliftingness if thats even a word...
Now i find myself waking up each day and looking to make sure my blue inhaler is near enough to me with a drink as i know that as soon as i move or sit up the coughing will start. Sometimes its just a little cough and im fine, other times ive been able to wake up and get downstairs and making breakfast before i even have a coughing fit - those are the really good days, which feel like they are getting few and far between. But most days its a horrid hacking cough and it really pisses me off. God knows what my neighbours think of me!
I dont like waking up and thinking when should i do my physio - before or after my shower, or breakfast, i dont like waking up anymore and thinking what shall i do for physio this morning, or when is my next hospital appointment again, or am i on any new meds that i need to take at certain times at the moment?... I hate these pestering thoughts. They are swamping my head more and more these days and i hate it.
I wish i could wake up and this all be a dream, and that i wake up and feel invigorated for life and jump out of bed and run round the garden like a loon without getting stupidly breathless...
I wish i was like 10 years old again. I was thinking and thats when i think i last felt "fully healthy". If this life was a game i would need to be searching around for little hearts right now to build my health back up before i go and fight the "big boss". I feel like im walking further and further into a battlefield unarmed and blindfolded everyday. Its horrible and right now theres not a lot i can do about it other than "try my best to stay healthy".
Im a pretty bad person to have this disease where a lot is required of me 24/7 'coz im so lazy sometimes. I really dont know if God is real, and im not even sure if i want to know 'coz ive got a few things to complain to them about, but if God is real, i would love it if he could get rid of all this rubbish disease business. Thats all diseases not just CF. I know there are a whole range of different diseases out there in the big bad world but sometimes i wonder if were all still in the same boat anyway.... Even so, the boat sucks.
Maybe im wishing for too many things, or too much of one thing, but I wish i could feel invincible again...
I miss them days. So simple. Them days of feeling invincible and like i could literally hold the world on my own two shoulders - not in a manner of troubles and concerns way, but in a manner of strength, energy, upliftingness if thats even a word...
Now i find myself waking up each day and looking to make sure my blue inhaler is near enough to me with a drink as i know that as soon as i move or sit up the coughing will start. Sometimes its just a little cough and im fine, other times ive been able to wake up and get downstairs and making breakfast before i even have a coughing fit - those are the really good days, which feel like they are getting few and far between. But most days its a horrid hacking cough and it really pisses me off. God knows what my neighbours think of me!
I dont like waking up and thinking when should i do my physio - before or after my shower, or breakfast, i dont like waking up anymore and thinking what shall i do for physio this morning, or when is my next hospital appointment again, or am i on any new meds that i need to take at certain times at the moment?... I hate these pestering thoughts. They are swamping my head more and more these days and i hate it.
I wish i could wake up and this all be a dream, and that i wake up and feel invigorated for life and jump out of bed and run round the garden like a loon without getting stupidly breathless...
I wish i was like 10 years old again. I was thinking and thats when i think i last felt "fully healthy". If this life was a game i would need to be searching around for little hearts right now to build my health back up before i go and fight the "big boss". I feel like im walking further and further into a battlefield unarmed and blindfolded everyday. Its horrible and right now theres not a lot i can do about it other than "try my best to stay healthy".
Im a pretty bad person to have this disease where a lot is required of me 24/7 'coz im so lazy sometimes. I really dont know if God is real, and im not even sure if i want to know 'coz ive got a few things to complain to them about, but if God is real, i would love it if he could get rid of all this rubbish disease business. Thats all diseases not just CF. I know there are a whole range of different diseases out there in the big bad world but sometimes i wonder if were all still in the same boat anyway.... Even so, the boat sucks.
Maybe im wishing for too many things, or too much of one thing, but I wish i could feel invincible again...
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