This is only a little blog tonight as its fresh on my mind.
I had a pretty terrible nights sleep. spent the whole night coughing barely slept at all! chest was awfull just couldnt relax or catch my breathe! and all i wanted to do was sleep but my lungs had other plans!
anyway i made up for it because i didnt wake up till gone 12ish this afternoon! :) the SHO dr that came to see me this morning wasnt too impressed but i literally couldn't hold a conversation with him, you know that feeling where you almost feel drunk your that tired and my eyes were stinging i couldnt focus on talking to him, i did ask him to come back later on but he was having none of it...he probably asumed i had just stayed up all night on my laptop or watching tv lol and i didnt get a chance to explain why i was actually so tired lol. oh well i dont remember him leaving my room so i must have fallen back to sleep! :)
so i had a little visit from jackie the woman from the palliative care team...and like i was promised there was no black robe or cross!! haha actually she had a lovely outfit on and a massive smile on her face!
so i automatically felt relaxed with conversation we were about to have!
she just wanted to get an idea of how my pain was etc and she suggested a few things like having a patch on me to relieve me throughout the day..but i wasnt keen and she suggested to have stuff throughout the day and again i wasnt keen on the idea lol (im a pain in the arse).
i just feel like i dont want to give in too much yet...i dont feel like im ready to start giving up or showing weakness (even if this sounds stupid) like its a big thing for me! i want to be strong, i want to be in control of my body, and if it means dealing with a few pains il just get on with it, i wont think twice!
i dont want it to be the start of others stuff...im in denial sometimes of my situation.
BUT we came to an agreement that as my pain is worse in the mornings when i just wake up, shes suggested that i have morphine then. and its on request so if i feel like i need it during the day i can ask for it.
im not sure i completely feel like i want to have it but iv agreed to try it this weekend, just to see how i feel about it and weather it helps. shes going to come back and see me monday morning.
i think i need to just be grown up about it, if it helps with the pain at least i can push myself to clear more off my chest without worrying or holding back because of pain so for that reason alone i should go for it, and stop looking at it as a negative or failing but as a positive and that long term will keep me going and help me stabalise and get better even!
so yeah that pretty much sums up my day...oh and appetite seems to be getting much better, had a really great nurse today and hes heated me up both my currys today which iv eaten and now doing a massive feed! so im expecting to weigh at least 39kg if not 40kg by monday!!
I had a pretty terrible nights sleep. spent the whole night coughing barely slept at all! chest was awfull just couldnt relax or catch my breathe! and all i wanted to do was sleep but my lungs had other plans!
anyway i made up for it because i didnt wake up till gone 12ish this afternoon! :) the SHO dr that came to see me this morning wasnt too impressed but i literally couldn't hold a conversation with him, you know that feeling where you almost feel drunk your that tired and my eyes were stinging i couldnt focus on talking to him, i did ask him to come back later on but he was having none of it...he probably asumed i had just stayed up all night on my laptop or watching tv lol and i didnt get a chance to explain why i was actually so tired lol. oh well i dont remember him leaving my room so i must have fallen back to sleep! :)
so i had a little visit from jackie the woman from the palliative care team...and like i was promised there was no black robe or cross!! haha actually she had a lovely outfit on and a massive smile on her face!
so i automatically felt relaxed with conversation we were about to have!
she just wanted to get an idea of how my pain was etc and she suggested a few things like having a patch on me to relieve me throughout the day..but i wasnt keen and she suggested to have stuff throughout the day and again i wasnt keen on the idea lol (im a pain in the arse).
i just feel like i dont want to give in too much yet...i dont feel like im ready to start giving up or showing weakness (even if this sounds stupid) like its a big thing for me! i want to be strong, i want to be in control of my body, and if it means dealing with a few pains il just get on with it, i wont think twice!
i dont want it to be the start of others stuff...im in denial sometimes of my situation.
BUT we came to an agreement that as my pain is worse in the mornings when i just wake up, shes suggested that i have morphine then. and its on request so if i feel like i need it during the day i can ask for it.
im not sure i completely feel like i want to have it but iv agreed to try it this weekend, just to see how i feel about it and weather it helps. shes going to come back and see me monday morning.
i think i need to just be grown up about it, if it helps with the pain at least i can push myself to clear more off my chest without worrying or holding back because of pain so for that reason alone i should go for it, and stop looking at it as a negative or failing but as a positive and that long term will keep me going and help me stabalise and get better even!
so yeah that pretty much sums up my day...oh and appetite seems to be getting much better, had a really great nurse today and hes heated me up both my currys today which iv eaten and now doing a massive feed! so im expecting to weigh at least 39kg if not 40kg by monday!!
1,209 hours listed on transplant list.
love love xx
Hey lovely! Saw the link to you on Lees fb! Have known him since he was little! You are one very brave and beautiful young lady and I will follow your progress! My cousin is a transplant co ordination but sadly in New Zealand so not much help! Hope you get a donor soon, fingers crossed! Janx
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