Over the last few months life has been pretty fucking awesome. Hospitals have figured incredibly low, and when I have popped to the Brompton for a check up, they send me away ecstatic at just how fantastically i'm doing. My swollen face has reduced quite a lot, and even my tummy keeps shrinking in size - I finally feel (almost - does anyone?) normal!
Big news health wise is that for the first time ever, i'm a healthy BMI *scream*. The dietician even said I don't need to gain anymore weight if I don't want to *double scream*. I never ever thought i'd ever hear those words, when I think about it i'm still in shock. For he majority of people with CF, "gain weight gain weight" is drummed into you at ever single clinic, every meal time the doctor is there on your shoulder, whispering those words, with your parents voices on the other side. Gaining weight, high calorie, eat more Laura! are statements that haunt your every move, and to be suddenly free from such a burden is both incredibly hard to comprehend, hard to put into action but at those epiphanic moments of realisation absolutely heavenly. I still eat high calorie - as I said it's hard to break the habit of a lifetime, but without the pressure food, mealtimes and day to day life is just incredibly more enjoyable. It surely feels like a huge weight has been lifted, and food is just there to enjoy now, not a vital part of my day. It will take a while to adjust to this new way of viewing eating, but I guess it's just part of the process of adjusting to my new body.
Chest wise, i've been incredibly stable. In the last month i've not only been to one festival, but two - my first ever festival experiences(!), complete with rainy night time camping, lack of sleep, and hurricane Bertha thrown in for good measure. The only casualty of both weekends being my intense sunburn - it got pretty unbearable, especially due to my deadly cipro/ voriconazole cocktail - much agony ensued! These weekends haven't had a detrimental effect on my lung function yet, though I went into them the healthiest i've been, probably ever. The two values of my lung function has returned to only being 20% apart rather than 30%, which I see as a good sign. Its now stable at 60 and 80 percent, and I feel fantastic. Below is exactly the consequences of feeling such a way, and having a little too much fun.
Interestingly, now i'm working 5 days a week, 9 until half 6, I seem to have an insane amount of energy, more than i've ever had before. It's invigorating, and I would really recommend to anyone filling your entire day with a structure in order to keep your body energized. I will go to work, do a 9 hour day, then go to the pub or out that evening, and repeat. I have no clue how i'm coping, but I am! As time progresses however I do find myself craving the weekend to recuperate, and i'm not sure if I could continuously do this sort of routine without a holiday every few months!
My time at Diffusion PR has nearly come to end, i'm sad to be leaving yet awaiting with an eager heart all the possibilities that lay ahead. I know for sure I don't want to return to lazy indolent days, and will be searching for a new job, part time would be ideal, as soon as I finish. I will allow myself a couple of weeks to get on top of myself, then look forward to jumping into a new project. PR has been interesting, but I don't want to close doors just yet career wise. The ethical work with Primark and Dunelm's social media especially have been fantastic and such good experience. Doing this work I have become brainwashed by the amount of bloggers and vloggers (I use fancy words now) i've come across, so out of curiosity I decided the other day to dabble with my very own vlog. I was supposed to be working from home, but obviously found ways to procrastinate, resulting in this weird piece of cringey cinema. Here's the link to laugh, I doubt i'll be doing another any time soon!
Hi there Laura, my name is Gemma. My boyfriend suffers from Cystic Fibrosis, but fortunately he is on the better end of the spectrum as I like to say. Looking at him or hearing him cough you wouldn't be able to tell CF. I feed him up with high calorie foods, we go to the gym three times a week, live next to the sea and he does all his nebs and takes his vitamins, etc daily.
ReplyDeleteHe was in for IVs in Feb and still managed to go to work for the full two weeks. He hasn't stayed overnight in hospital for anything in nearly 2 years!
It isn't enough to simply say I'm proud of him, I don't really think any words can describe how I feel about him to be honest!
Your blog has helped me to understand the illness from the other side. My boyfriend and I talk about it - not all the time - but if I ever have a question he will answer it to the best of his ability. It does get us down some of the time, the future is uncertain as I'm sure you know.
When we first started living together it really opened my eyes for how he gets through his day, that's when I first found your blog. As I said, it has really helped me to understand without annoying my boyfriend with inane questions, you know?
So I guess I just wanted to say thanks. And apologies for the wall of text!
Glad to hear you're doing so well!
- Gemma x