Tuesday, 1 April 2014

The past 6 months

I haven't actually written a blog since mid of October last year. So there's a good nearly 6 months to catch up on.

First things first, I moved out! Me and John got a place together in February, after spending 6 months uming and ahing about it, wondering if we'd even afford it. In the end, we found a really nice first floor, two bedroom flat exactly where we needed it, so decided to go for it. It's the only way to see if it would work out seeing as staring at sums for several months was just getting us nowhere.

We had plenty of help, we had most of what we needed, various family members helped out and another family friend gave us a few pieces for free, and got other pieces nice and cheap (mostly the coffee table and two sofas. They're white Ikea sofas but they're quite small so we're aiming to save up for a while and get a nice corner sofa instead). It's private so obviously you need to ask permission if you want to decorate or anything but everything looks fairly new, and the walls are nice and bright, and we're allowed to put up wall hangers to put up pictures, yay! The stairs into the flat are steep but as long as I don't have to go up and down loads, I'm fine with them, and the back door steps are less steep so there's an alternate route if I can't manage. The local social services said that if I do ever need a stair lift and the landlord is okay with it then they'd help me with that but I'm really hoping that's a long way away. If anything, I'm hoping they'll help build up more strength as currently my legs tire quicker than my lungs.

I've gotten used to housewife life but I don't mind it too much! In fairness, at home, I did my own washing, bought my own main food etc, the difference is we buy more food now, house bits and bobs, and I do a bit more washing but it's not too much to handle. And I've actually got the time and space too cook now so we have homemade meals all the time. I've got all day to do what I need to do so I don't have to exhaust myself running around. As there's just two of us there isn't too much to have to clean up either, a massive change from living at home with four other people!

Plus, over the last six months, I've still been on the ivorcaftor and lumacaftor trial. The main trial has finished, and that meant I was allowed to continue onto the rollover study. This is two years (TWO BLOODY YEARS!) long, but whatever drug I'm taking now, its definitely a real drug. The first 6 months was devoted to trialing lumacaftor on its own, kalydeco and lumacaftor, and a third group who were taking all placebos. I still don't know what I was taking and I won't find out until all the info has been collected (so probably not until the next two years are up). The rollover study is still divided into three groups, but its kalydeco and lumacaftor, and two other groups taking lumacaftor at two different doses. But there's no group taking an entire batch of placebos.

To be perfectly honest, I can't tell what I'm on as there was a big change, probably going hand in hand with several things; after my horrendous health in summer, my weight was an awful 39kg, which meant my bmi was about 16. Since then, my appetite came back to all its glory (even after the weird week where I couldn't face food for no apparent reason) but I also snack all through the day and take two calogen extra supplement shots a day too - I've always been shit at scandishakes, enlives and fortijuices, as they fill me up so this suited me perfectly as they're literally just 40ml shots. And since then, my weight has increased to it's highest ever of 48.5kg. So naturally, it's really hard to tell if the drugs are real, and working, or if the nearly 10kg of desperately needed weight is helping. I've never hit past 46kg and that was really short lived, generally I was stuck at around 42 - 44kg at the most. Peg feeds were threatened, diabetes was considered, creon was checked, basically everything they could think of to as why I didn't gain weight but I did eat three meals a day and ate between meals (obviously not enough).

They say that when you start kalydeco you notice a change in your chest gremlins. Both times at starting different drugs, I was starting IVs too (a coincidence). IVs change the lovely contents of my lungulars too, so basically there's no way for me to tell, even if I was allowed to tell, which drug I'm on. For the more irritating part of the last 6 months, and the next two years, people have naturally been interested in how I've been progressing. I've had to repeat so many times, that I'm doing well in myself, my lung function has increased (although its only increased back to where it was before my bad drop in the summer. That said, I thought I'd never see 65% again - I still need to work on my fitness level so I actually feel like I have this much though.)  I don't know whether to attribute this increase and better health to my massive weight gain and being in a better routine (i.e. always waking up in time for breakfast instead of sleeping in so long you miss a meal) or because I'm on some form of real drug.  On top of that, I'm supposed to be careful to who I speak to as they don't want the wrong information out there. I'm encouraged to talk to friends and family but they don't want you to talk about in depth stuff on public forums/to strangers. I suppose talking on my facebook status is okay as it's private, and on the blog I'm not really giving away too much. I should know that by now anyway, I've read the contracts about 5 times!

At some point I should get around to taking photos of the flat for those bored enough to see where I spend most of my day! I think I've covered the main changes of the last few months, so I'll end here - if I carry on any longer my rambling gets out of hand.

Long year? Long post

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