Hi everyone, how is everyone doing? It’s hard to remember where I left off even though it wasn’t that long ago. The whole groundhog day/zombie brain thing that everyone is going through is playing it’s part. There is very little that changes from day to day, as I’m not really able to do much. Mornings I would normally wake up at about 5 and then lay on sometimes sleeping others not, if I sleep I get up when I wake up again. Otherwise I wait till 7 and take my tablets and head downstairs for a dragged out breakfast.
On Tuesdays and Fridays I go to hospital, give bloods, wait, see doc, and get infusions if needed, tuesdays I always get an antifungal infusion and would get the odd bag of platelets or RBCs, they also give me IVIG every 4 weeks to give me a bit of an immune system boost to make sure the cough doesn’t progress to anything.
In the mornings I watch my series links until lunch then try to sit outside for a while and watch a film or some tv shows. Come in when I get too cold and continue on, if the football is on like the Euros at the moment I would watch that. After the 8pm games I would normally stick on another film or tv show and get halfway through and be too tired and go to bed and repeat.
That’s my two days, I try to do some exercises to build up muscle but there are some days I’m much better at that than others. I’m doing a decent amount of reading and have got through nearly 30 books so far which is certainly more than I have ever read, although this does include audiobooks, the book count has slowed since the film count has increased. For a while I wasn’t really able to do much else as the brain was so mush but over the last couple of weeks I’ve been able to start thinking again. I started a project about a month ago but had to stop as I just couldn’t think properly but I’m able to get back to it again now. I’ll send a link to it when it’s done but won’t be for a while yet, I keep on making improvements to it as it’s just the skeleton and need to build around it.
I have been able to do a bit of work on the websites as well, although there’s only a couple of things that will be noticeable, the majority of the changes were in the background. It’s been nice to use the brain a bit, it will be nicer to get to properly use it again. Getting onto the PS4 and Switch a bit has helped too but the concentration levels aren’t great and not able to be on for long, I have a mountain of games to get through though with PS+ and getting ones that are on offer. Really should stop getting more. This is the same with books. I’d say I probably have enough, full stop.
As for how things are actually going :-
Well I’m still on a mountain of tablets, the steroids are being reduced each week still and another couple of weeks I’ll only be on my maintenance dose and then we will start reducing other tablets too. Although this has been maybe a three month delay with having to go onto steroids. Annoying, not like there was any other option though with the Graft Vs Host reaction.
The hypersensitivity seems to have eased considerably, it’s still there and I can feel when I’m reacting to things but I’m not reacting as badly as I had been for a few weeks. It was horrible for a while where I just couldn’t stop coughing, now I’m getting some respite and able to manage a fair bit better and able to avoid situations when I know I’m going to have problems.
The pain in my diaphragm hasn’t completely gone away, in fact yesterday It was pretty bad. It had been gradually improving with not coughing as much and was close to easing completely then a couple of times I tweaked a muscle the first was trying to get up a couple of steps, I wasn’t strong enough and stumbled back and not that I fell or anything, but the step back down caused me to hurt a muscle in my chest which I think was a bit weak to start off with but with the strain it just tipped it and was quite painful.
Later in the week I woke up about 5 as usual, was grand until I moved and had this horrible pain, I wasn’t quite sure why at the time but looking back it seemed to be caused by me lying on my arm and “bending” a rib, no idea how long for but it’s very sore. That was maybe a week ago but it is gradually improving and on the verge of going away.
The last two visits to hospital have been quite pleasing. Last Friday was the first time in a long time that the platelets hadn’t dropped, and again on Tuesday. Not that they went up by much and are pretty much the same, but they did increase marginally and not drop. The other counts all seem to be going in the right direction too and so I didn’t need any infusions of platelets. I’m back on the diuretics to get rid of the water retention. My legs were filling up to my knees and completely bloated up and I couldn’t seem to do anything to get any of it shifted. Now with a lot of quickly having to go to the loo it’s over down around my ankles, still a bit to go.
It has made my legs a lot lighter and I’m able to lift them up a lot easier than what I could for a while there. Once I get rid of the rest it’ll help even more and by that stage I will be able to get walking a bit more. It has made my legs look a lot worse now with the lack of muscle.
Yesterday the pain in my diaphragm came back again really bad, I did overeat a bit the night before and I think I ate something that gave me a lot of wind which I think has aggravated it, also the diuretic and probably need to drink more. All day it had been catching me and the only time it settled at all was when I was lying down. That’s not going to do me any favors though so I had to sit up but then it gradually builds up again and again. All really annoying and will hopefully settle again and I’m able to do a bit more but while this is sore I’m reluctant to do too much.
I hope you are all doing well and speak to you again later.