I frigging hate this question!! Just because i dont work doesnt mean i sit in the chair and watch tv all day...the day goes so quick and most of it is spent doing CF stuff to be honest.
I get up at the latest half 9, cough because laying down all night means all the crap sits on my chest and then go downstairs. I have my tablets and morning nebuliser and then have breakfast. I then have another nebuliser (Dnase) which i have an hour before physio as it thins out the mucus so i can cough it out easier. While Im waiting for that hour I get dressed and ready (which if im not well or tired is a big effort in itself). Then comes the physio and lasts as long as it takes to bring up however much shit is on my chest. This kills me and tires me out so i have a rest for a while and then its lunchtime!!
I normally have 2 cooked meals a day so by the time i have cooked and eaten my lunch an hour has gone. Then i have a couple of hours in the afternoon to actually get 'normal' jobs done such as ironing, cleaning, shopping....and then everyone finishes work!! I have to have dinner by at least 7 otherwise i still feel really full up when i start my overnight feed. Normally start my feed by 11pm and this can finish by about 3 or 4 in the morning depending on how fast i have it running through. I never have a full, uninterrupted nights sleep.
So THAT's what I do all day....but i admit that when i do have a bad day or feel ill, i will take ages to do things and may spend longer sitting in a chair or in bed than i should because i physically have no energy to get up and that is not laziness!! That was not a rant though, its just people have asked me that question alot lately and make it sound like i do nothing when it takes alot to look after myself.
I got my new feed delivered on Tuesday and there is frigging loads of it!! I have a pretty new pink 4 drawer plastic storage system to put it in but it still doesnt all fit! Because the homecare people want to make things as difficult as possible, I get 200ml bottles of feed but need 1000ml overnight so I have been given 1000ml empty bottles and have to pour in 5 of the little bottles and then connect the tubes and hang it up. Why it cant come in 1 litre bottles already, i dont know! I had the first lot that same night, did it a bit slower than normal so i get used to it and it all went fine :) so i now get 2000 calories overnight...greedy bitch ;)
Yesterday I stopped in at my old work at the nursery and its all been decorated and moved round and looks lovely. I spent ages in there catching up with everyone and sooooo want to go back - i miss them all! We are hopefully all going to go out again soon which I really hope happens.
Scotts mummy and daddy have gone on holiday for a week to Eygpt so he has the house to hisself. I am attempting my feed at his for the first time as i was abit scared before because of the doggies but we have worked out a solution!! I packed up all my stuff last night (i had so much stuff it looked like i was moving) and went to his...i had everything...pump, tubes, syringes, pjs BUT not the actual feed! What a complete pleb! Definatly need to go back to being blonde ;)
x Lots of love x