2 months on transplant list today!!
emotionalllllllllllllllll
and im not even on steriods yet..although this evening im thinking to myself i need to man the fuck up and just get on with it...i seem to have gone into typical cf mode, feeling sorry for myself and just dwelling on being ill. this is what happens when you spend more than 10 days in here, its what it does to you, i bet theres a secret side affect to all the drugs there giving you!
anyway its like a light bulb has gone off in my head tonight! im in control of my body not these drugs therefore i decided what happens!
yesterday was a complete right off. i literally spent all day attached to my drip in bed feeling sicky and all :( i did managed to eat a bit of pasta and keep it down which is a plus! and they gave me this injection in my belly of levomapromazine which did sting like a bitch but wow did it work quickly! made me fall asleep tho.
woke up alter in the evening and had evening ivs and asked for it again....woke up this mornign with a brused belly as they had to go into fat..theres not many fatty bits on my body, so bellys a bit tender this evening.
woke up with bad chest pains this morning, but when i had my morphine it eased it which was good but fell back to sleep until my mum and cousin and beautiful amelie came up to visit and cause madness in my little room! lol didnt mind tho! ;)
but sickness has been like the devil and taken control and resulting in me bursting into tears today in ward round infront of one of the consultants and everyone...which then my mum joined in and others got a bit emosh!!
its just all too much. they are now aware that my weight is 36kg and that my bmi is only 16 when it needs to be 18 to stay on the transplant list!
i was prob a bit sensitive today, but find that they think i should be trying harder and mayeb i should but they dont understand how physically exhausting it is to throw up and feel sick constantly and also have trouble breathing....anyways after explaining everything to cut a long story short, there FINALLY moving me rooms 2moz to one literally next to the kitchen!!
iv just gotta try my feeds and then go straight to sleep when i start it, so basically take the drug that makes me sleep. and just see what happens.
i mentioned to them about a drug called megace that alot of people seem to advise but i was told this is for long term and its not right for me.....i may try again with this though as weight is and has been a problem for a long time and if i can get more of an appetite then it might help...will see wasnt in the mood for arguing today.
on a good note. my chest sounds clearer, lung function is up to 18% which im OVER the moon about seen as tho it hasnt been that high since before my lung collapsed last summer! my crp (infection levels) seems to be down. so just gotta get this weight on now!
im on it now...my bodys weak but my head is strong again.
i wont be beaten and all this hard work iv done to get me on the transplant list will not be affected by this! i dont have the time anymore to play around with my health... and every knock affects everything!
so im going to go have a nice hot shower (once the lady who is in there hurrys up dirty bitch lol)
get my ng tube down..get feeds ready small one, im not going to jump ahead of myself. get snuggled up in my nice new clean smellying duvet get ivs, get anti sickness and sleep and 2moz is a new day and fresh start! and need to get out of this place back to my comforts and lee!!
love love
1,495 hours on transplant list x
emotionalllllllllllllllll
and im not even on steriods yet..although this evening im thinking to myself i need to man the fuck up and just get on with it...i seem to have gone into typical cf mode, feeling sorry for myself and just dwelling on being ill. this is what happens when you spend more than 10 days in here, its what it does to you, i bet theres a secret side affect to all the drugs there giving you!
anyway its like a light bulb has gone off in my head tonight! im in control of my body not these drugs therefore i decided what happens!
yesterday was a complete right off. i literally spent all day attached to my drip in bed feeling sicky and all :( i did managed to eat a bit of pasta and keep it down which is a plus! and they gave me this injection in my belly of levomapromazine which did sting like a bitch but wow did it work quickly! made me fall asleep tho.
woke up alter in the evening and had evening ivs and asked for it again....woke up this mornign with a brused belly as they had to go into fat..theres not many fatty bits on my body, so bellys a bit tender this evening.
woke up with bad chest pains this morning, but when i had my morphine it eased it which was good but fell back to sleep until my mum and cousin and beautiful amelie came up to visit and cause madness in my little room! lol didnt mind tho! ;)
but sickness has been like the devil and taken control and resulting in me bursting into tears today in ward round infront of one of the consultants and everyone...which then my mum joined in and others got a bit emosh!!
its just all too much. they are now aware that my weight is 36kg and that my bmi is only 16 when it needs to be 18 to stay on the transplant list!
i was prob a bit sensitive today, but find that they think i should be trying harder and mayeb i should but they dont understand how physically exhausting it is to throw up and feel sick constantly and also have trouble breathing....anyways after explaining everything to cut a long story short, there FINALLY moving me rooms 2moz to one literally next to the kitchen!!
iv just gotta try my feeds and then go straight to sleep when i start it, so basically take the drug that makes me sleep. and just see what happens.
i mentioned to them about a drug called megace that alot of people seem to advise but i was told this is for long term and its not right for me.....i may try again with this though as weight is and has been a problem for a long time and if i can get more of an appetite then it might help...will see wasnt in the mood for arguing today.
on a good note. my chest sounds clearer, lung function is up to 18% which im OVER the moon about seen as tho it hasnt been that high since before my lung collapsed last summer! my crp (infection levels) seems to be down. so just gotta get this weight on now!
im on it now...my bodys weak but my head is strong again.
i wont be beaten and all this hard work iv done to get me on the transplant list will not be affected by this! i dont have the time anymore to play around with my health... and every knock affects everything!
so im going to go have a nice hot shower (once the lady who is in there hurrys up dirty bitch lol)
get my ng tube down..get feeds ready small one, im not going to jump ahead of myself. get snuggled up in my nice new clean smellying duvet get ivs, get anti sickness and sleep and 2moz is a new day and fresh start! and need to get out of this place back to my comforts and lee!!
love love
1,495 hours on transplant list x
left you a meassage of cf forum
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