Sunday, 20 March 2011

sick sick sick

Why does cereal make me so breathless? A random start to a blog i know, but i love 'start' cereal, but as soon as i start eating it it becomes a huge effort and i sit there and wonder why i ever liked it apart from the fact it is really yummy.

Ok so my whole blog wasn't going to be about cereal. I'm  sick sick sick, yes i know, its a bit tedious hearing those words, you probably all wonder when I'm not sick, well i wasn't sick for about 5 days while i was in harefield, on my reserve drug, I then decided after about 7-8 weeks IVs i needed a rest. Big mistake. I cant breath, I'm using the oxygen alot and getting rather annoyed as i have to restrict the amount i use as I'm scared it will run out and then if i need it desperately ill have none left. I went out today with my mum and ash her partner and took the oxygen but couldn't use it as it run out so earlie on in the day. This oxygen business is getting rather tricky. I'm going to ask about a concentrator and liquid 02 again, it seems i always run out over the weekend as well and can't ring up and order anymore. So i now have no more portable oxygen and it will take 3 days to order, does that mean i can't go out? I will still go out but will be forced to use the chair as i cant walk anywhere with out it, to be honest I'm struggling to walk any where with it either, my lungs are feeling that bad.

I used the wheelchair all of today, my lungs feel really weak, they feel like they have no strength in them, no strength to clear the flem I'm gagging on. There in alot of pain, iv been taking small amounts of oramorph to try and get by, but i woke up feeling like my lungs were about to give up on me, the pain was extreme and its always times like this i get scared they will just collapse on me, collapses can happen with CF lungs, iv never had one but never ever want to experience one, I think its one of my biggest fear.

I will be calling the hospital 2mz to start IVs again. It seems this permanent IVs thing is going to be a must, especially if i want to maintain what little lung function i have and stay well enough for a transplant.


  1. U need to do wot ever is right for u and wot ever works for u at the time!!! U just need to think that this stage in ur life is not forever so if it means staying on iv's or constant o2 or being waited on hand foot and finger then so b it... Surely the hosp can sort it all out so u can at lease put ur mind at rest that ur not gonna run out of oxygen which that alone is pretty panicky!!!! This won't b for ever babe in a few months( which I know sounds like a long time ) but it will go by and I'm sure u won't b waiting long and u will have new lungs that will let u breath easy again and u can start re building ur life again.... U just need to get urself through this stage and believe me the waiting is prob the hardest part.. God I've waffled bait then didn't I!!! U know wot I'm saying makes sense lol
    Keep focused sweet pea
    It will all come good in the end.... U deserve it
    Emma xxxxx

  2. CEREAL>>> I love it to...and i start coughing like crazy as soon as I eat a bowl of it...The doctors told me it was the milk!!!! The milk makes the mucus thicker....