First blog so not quite sure how to write this without sounding like a tit so bare with me whilst I figure it all out! I’d seen a lot of other CFers writing blogs and thought I’d start my own off and hopefully help raise awareness about CF, organ donation and just let people know what it’s like living day to day with Cystic Fibrosis (CF) and Cystic Fibrosis Related Diabetes (CFRD).
Where to begin.. Well I’m 19 and was diagnosed with CF when I was around 3 months old because I just didn’t gain weight..I was tiny (and still am!). Throughout childhood I never had a stay in hospital, never had IVs (intravenous antibiotics) and was really quite lucky in the sense that I was pretty ‘healthy’..obviously had chest infections but everything was controlled with oral antibiotics. When I was 17 I moved to the adult CF unit at Frimley Park Hospital who are absolutely AMAZING (but more on that later!). It was then that IVs where introduced as my body had got too used to the same oral antibiotics. I had my first PICC line fitted, courses of IVs and everything went pretty smoothly :)
Then when I was 18 I had my first admission into hospital..and because I’m such a bloody drama queen I had to do it emergency style through A&E! For some reason I’d been really dizzy, getting worse as the week went on and ended up not being able to walk straight; it looked like I was permanently drunk! Luckily I was only in for a week, wasn’t feeling too rough apart from being dizzy and for my first hospital admission it went well.
Then November came which in all honesty was a shock to me. As I’d been so well as a child I’d never really though about how ill I could become and kind of took an attitude of ‘that wont happen to me’. But at the beginning of November I was at home, at the start of the week I was feeling quite chesty and breathless and by the end of the week I literally could not walk 10 steps from my bed to the door. I was panting constantly, had no energy, couldn’t eat, had horrible temperatures and genuinely felt on deaths door. So we went down to hospital who took one look at me and admitted me straight away!! Whilst they were doing the usual observations my SATs (oxygen levels) started dropping, my blood pressure was so low, my pulse was sky high and quite frankly as the doctor put it my body was ‘shutting itself down’. If anything I feel sorry for my poor mum and dad having to go through all that!! The doctors and nurses at the CF unit are just outstanding and sure enough they calmed me down, sorted me out and after two weeks of being on oxygen and struggling to breathe I began to improve and they let me home. I had 7 weeks off work to build my strength back up..I was so weak from not being able to walk at all so it took a LOT of effort to get back again! And there’s no way I’m letting myself slip back to that without a fight.
Since then I’ve had two more hospital admissions, one just as a precaution to make sure I didn’t get as sick as November! And the other was only last week to have my first portacath fitted :)
So that’s all the CF-y stuff out the way! A bit about me.. I work in a school for children with Autism and absolutely LOVE my job :) I have amazing parents and family, a wonderful boyfriend and fabulous friends who all support me through everything. It’s times like when you’re really poorly that you realise who truely cares about you!
I’m a pretty bubbly person, always wanting to have fun (life’s too short!) and as anyone who knows me will back up, I can talk for England! And judging by this long post you can probably figure that out as well ;)
That’s pretty much it as far as a brief background and introduction goes! This blog is pretty much to share my CF journey with people who want to read about it as not everyone wants to hear about everything! I'm not going to sit here writing about how miserable life is with CF because I’ve got a bloomin’ amazing life with amazing people in it. Yeah CF gets me down sometimes, who wouldn’t get upset from time to time & everyone's allowed 'off' days when all you want to do is sit in your duvet and have a good cry..but life’s too short to sit and moan ALL the time about things you can’t change!