There is way more to me than just a life with Cystic Fibrosis, but its a huge part of my life, it affects everything i can do! Somedays i hate CF others i just get on with it! This is my life, my story, the way i deal with CF and the way it affects me! So read with an open mind, don't judge me or feel sorry for me! i'm stronger than you think and i'll keep fighting till the very end!!
I feel guilty sometimes that people can't always see that i'm ill but i feel like a bag of shit!
As i sit here in my hospital bed, drip connected, in my pj's with greasy hair n stupid little spots on my forehead n upper chest from the Ceftazadime i can't help but think about how really invisible CF is a disease! To look at me u would think that earlier this week it was probably the worse i've felt with my CF, struggling so much at home, i've let myself be admitted to hotel 79 at UHNS.
I haven't been in here for a year which you'd think is pretty good going, but i've had that many home iv courses its a little daft! Since January 2010 i've had 11 iv courses, which is pretty much one every other month! I only finished my last iv course on 21st September and on 11th October i'm back on them feeling like this! I don't like to whinge to much to be honest, but this last week was an eye opener to what life could be like and i'm just not ready for it.
For along time i've got away with not needing physio or nebs and just doing them as an when required, now i need them to function and it's hard for me to except really. My little lungs have really struggled over last few months and it's so hard to explain to the people around me. I wake up, i put my make up on like every other girl and you know make up really does work, it helps hide away the pale face I wake up with, then dry shampoo wow that was the best invention ever, no need to wash hair everyday just spray the greasy away!
People don't see it on my face that i'm ill, n they can't see my lungs! They can hear me, i cough sometimes and I don't even know i've coughed! The amount of times i'll be at work and people say "ooo that sounds like a nasty cough" or "you should be at home in bed" n I don't even know i've coughed. Sometimes i feel like i need to have a good old coughing fit n get the sputum flowing for people to see what's it's like, but that's something you become great at hiding too!
I take my Iv's everywhere with me, people are so used to me injecting them now, they don't blink an eyelid! For me to end up in hospital for me it's a cry out for help, i've gone round and round in circles at home and been getting know where! On friday at the hospital the cf team could tell i was struggling, i guess they see us differently to others, either that or we don't need to hide it all as much here! I don't put as much make up to come hospital that's for sure, i normally just crawl out of bed n throw clothes on n bit of foundation n eye liner n fall into my car!
It's hard when people can't see it to explain it, we all get them silly looks when we pull up in a disabled space and get our car n walk off, people so thinking we're not disabled, when to be fair we looking at the person getting out the next car thinking exactly the same thing and looking to make sure that they definitely have a sticker, especially if i've had to walk further because they stole space!
I guess i struggle and kind of feel guilty sometimes, for looking ok but complaining about feeling like a bag of shit but yet i'm still carrying on with my everyday life, pushing myself to go work and go out and carry on like everything is kind of ok! Does that make any sense!
I am really lucky there are only a few people in my life that i get frustrated at for not understanding my world, everyone around me really tries, i just wish it was easier to show people sometimes!!
Actually maybe this will help!!
Here are a few photos of me and my treatment!
My morning tablets!!
My Nebs and Acapella My Overnight Feed
My peg connected up to feed and doing my insulin!
My Evening Tablets
All this is stuff i need to do or use every day to function, then when your ill you add in the IV's 3x a day, for me who is normally miss independent, it all just came too much this time!
Steve is great and really will do anything for me to keep me well, but he works and at the end of day he can't do it all! So that's why i'm here, to get rest, cuz to be fair it takes me coming in here to even get me to ring in sick at work, in the last year since i was last in here, even though i been ill and had all them home iv courses i had only had one day off sick!
So here I am resting, still on me drip to re-hydrate me, think this is to keep me on a short leash, only place i move to is the loo and that's pretty often when your on a drip, i'm bloody weeing for England!
I hope my lung function has improved and all this hard work with physio over the weekend pays off because my ribs honestly feel like i've been through 10 rounds with the physio. I haven't had percussion for years and it's never worked like it has been doing this last few days before! When i was a kid physio used to say how frustrating it was doing my physio because they felt like they were doing nothing, i never used to cough anything up, but that just goes to show how much my lungs have changed because now i'm so productive and so full up with crap i hardly know what to do with it, clearing it is hard work, it becomes easy to just do what u need to do to function, so you can get on with life, rather than pushing that little bit more to keep shifting the crap! i'm kind of surprised but not surprised by how much i've bought up this last two days in here, but then the other part of me isn't, but i really need to get it all up and hope my tap doesn't turn back on and fill it all back up again for a long while!
I'm gonna do my nebs now, then its feed and bed me thinks! Problem with been in here sometimes, u don't get tired just sitting around resting, where at home i would be in bed by 10 and asleep by half past! Here i'm just awake! But i'm saying night! N i'll update you soon!