I can't believe 3 weeks have gone by since I last updated. Sorry for going quiet on you again.
Not much of interest to report really. My chest has been ok in the main, day to day it will be tight or achey but thats just one of those things and it comes and goes. I have been feeding still and apart from a couple of not too pleasant experiences with the tube I have been stable with my weight between 48kg and 49kg. Thats 6-7kgs gain since April which is great!
My main problem over the last couple of weeks has been trouble sleeping. I've been really tired but finding it impossible to get off to sleep, if I do get any sleep its only really light and poor quality so doesn't make me feel any better. I also keep waking up repeatedly, and having the having broken nights with the feed machine alarming when its finished doesn't help either. So for the last few days I've been feeling really rough, and completely exhausted. I was getting to the end of my rope if I'm honest as its hard enough to function most days, minus sleep is a step too far! Thankfully last night was the first night where I got some proper sleep and only got up once to see to the feed pump. Heres hoping that I'll get back into my regular pattern and catch up on all that much needed rest.
I've been stuck at home most of the time recently as everyone everywhere seems to have some sort of cold/virus/flu. Obviously swine flu is a huge worry at the moment, there is not a day when they aren't reporting about it. I do realise that a lot of the stories are simply scaremongering, I was watching a repeat of a comedy programme the other day that was saying all about bird flu and how it was going to kill us all and that never came to much did it? However I am still worried as its hard to ignore that almost all deaths have been in people with underlying health conditions (i have nearly everything on the at risk list) and the disease effects the respiratory system first. Plus there are also loads of other lurgies lurking round at the moment and its just a huge risk for me. Going out is a real struggle lately anyway, couple that with the fact that everywhere i go there are people sneezing/coughing etc and I would rather just stay home or go for drives. Its not ideal and I know lots of people would say "you have to live a normal life" but my life is not normal. Despite what people say it hasn't been anyway closely resembling normal for years now. I feel so vulnerable when I am in public places, despite all the hype around swine flu (or any bug) the bottom line is my I will suffer more than most if I pick it up. I am more prone to infection, I have less lung function to lose than most (20%), I will be less able to get rid of a infection, I could miss out on a transplant my raison d' etre at the moment, and finally due to all of the above this really is a case of life or death for me. So I will be takingprecautions that i think are necessary and not going anywhere too crowded etc or taking any risks. I still have lots of friends and family who come over to see me and are responsible enough to stay away if they feel ill. I know lots of people probably think I'm being overcautious with all this but keeping well is so important to me, I have to do everything in my power to help myself.
Last time I blogged I was trying to find things to keep me busy and Im happy to say I've managed to get quite a few things lined up. Mainly doing work for charity and helping out where I can. Its really good to have something to keep me occupied.
Hope all of you are ok, keep well and be happy. Ill update again soon xxxx