Saturday, 29 January 2011

Partying, death and waiting

Sitting in my pj's wrapped up in bed. This is how i spend most mornings and early afternoon as it would now be. I hate mornings, I really do, temperatures, aches, terrible breathing and generally shittiness are what wakes me. Iv had a very strange week health wise, alot of ups and downs, moments when i really thought i should be in hospital and others when iv felt pretty good. I went out last Saturday night and iv got to say iv never been more proud of my little lungs, they did me proud, not only was i able to walk around loads, a rarity for me, I usually just get to breath less to stand for long, but i danced, I danced alot. I had to concentrate on me breathing alot but that doesn't matter i was still dancing! I got incredible drunk, with my yeovil girlys and had a generally great time.

I also went out last night, with the boys, I have to say this is a very buissy week for me, Iv been out loads sat, Friday night and again tonight. Well last night we went bowling, Me, Stu and a few of his mates, It was a great laugh, I'm awful at bowling but great at pool and kicked there asses. My lungs weren't so behaving and i couldn't stop coughing all night, feeling breathless alot and the whole bowling thing was quit hard work. But hey I still had a good time. Tonight were heading out for a Birthday party, I'm wearing my pretty pink dress again, which i love, but i don't think there will be any dancing or walk tonight, My lungs are a flemy mess, I spent all night wheezing and gargling, which made it extremely hard to sleep.

On a sad note, the 27th came and went, the 10th anniversary of my friends Debbie's death, she would have been the same age as Stu, 26, I had a little tear for her, but i know shes where she belongs, breathing easy and looking over everyone, A beautiful Angel.

Also another CF friend passed away last night, David Gilmour, David was on the transplant list but never got his call. It makes me so angry that we live in a society where we could save people like David by simply being organ donors but we don't and now hes dead. He was sarcastic and witty and a doting Uncle. I'm in total shock about his death, I don't know if he was any iller than usual. All I can say is i hope hes breathing easy.

Iv come back to edit this blog as i only just found out a women from my cf centre waiting for a transplant died on the beginning of january Denise, I feel so saddened by this. I didn't know denise personally but kept up to date on how she was doin and always had my fingers and toes crossed for her. And this is why I hate january, full of death.

My appointment is this Wednesday, I wish it was already here and i could stop thinking about it. Its not the actual appointment or the tests I'm dreading its what they'll decide. I hate the waiting, the unknown, I hate the thought that if I'm put on the transplant list its just more waiting. I'm not a very patient person and to have my life on a waiting list will simply drive me insane. But at the moment, I feel like I'm just in limbo, which is far worse, in limbo there is nothing. So I am waiting to wait.

My life the endless waiting list.


  1. *Cuddles* Thats so weird. I knew Deb, we stayed on Rose together alot, I was in and out of her room ALL the time but we lost touch when we got older and moved hosps, she was absolutely lovely and I didnt know she had passed at all. I remember when they opened the day room on Rose ward and Brian Connoly came to the opening, she was in bed after an op (possibly port but cant remember) so I brought her some cake to make sure she didnt miss it. Loved her loads :-)

  2. Reading this actually chokes my throat... You'll have been told this many a time I am sure, but you're incredible, & certainly not alone. I wish you all the best :)

  3. I am no where near your situations, but I feel for you, I do not know what it will take for people to understand what you are talking about,I think that "NORMAL" people cannot understand until they visit a cf unit and talk to people under threat and even then they will not "get it" because you all look so "normal" Perhaps they should be invited to an aggressive physio session where they see you cough your guts up. F**k it, They probably still will not "Get IT"