So anyway, I've been having a hell of a lot of ivs recently, its been pretty much every 3 weeks for several months and sometimes less...So I had to have one of 'those' conversations with the consultant last clinic, and I have been rather forced to confront some home truths. 'Those' conversations are the ones that you have about the big scary things, like the fact that the "drugs don't work" very well anymore (now it's 90s grunge songs), and I'm rather running out of options, so transplant is rearing it's ugly head once more. You may well make it through the conversation without dissolving into a puddle of angry tears, but later on you have to actually face the facts, and I really don't want to. My declining health has been so gradual that I find it hard to recognise the fact that I am this sick- sick enough to need a double lung transplant in the not too distant future. I know that sounds daft, but it's only when I actually sit down and think about my daily life that I realise how much I'm struggling- physically and mentally. Putting off going upstairs until you absolutely have to, because you don't want to cough your lungs up is not normal in a 34 year old. Not being able to speak without getting out of breath- ditto. Having to make other people walk at my pace cos there is no way I can go at theirs.... The list could go on, but frankly it's too depressing. But all this has occurred so slowly that it has just become 'normal' for me. If I had gone from being well to suddenly being really ill then it would be a lot easier to realise where my health is at now. Cf is such an insidious disease that when you do finally confront what it has done to you, it is almost surprising!
We've not given up completely just yet tho. The consultants and I have a plan! Next time I need ivs, we are going to try and desensitise me to some of the meds I've previously been allergic to, which I'll have to have as an in patient sadly. But it may mean that we can try some new treatment options and hopefully get a little bit longer off ivs, which would be really nice. So to try and alleviate the boredom I'm going to plan and get materials for a couple of crochet projects, and make some hats that I can then trim whilst incarcerated. We have also just completed the purchase of a bungalow, that once we've done it up a bit (ok a lot!) will hopefully make my everyday life a lot easier and less stressful. I'm also rather enjoying designing all the fun things we 're going to have in the new house, with Mr EB of course! I'm not going to just stop living and doing things and being me, because my body is being difficult.