Hi. Hello. It’s been a while, hasn’t it? I’ve quite thoroughly neglected my own site for the last two three years (oh god) FOUR years. (I’m now finally getting back to writing again, so the third time’s the charm, right?) Is it because I kept growing weaker by the day and was unable to go out and about to take pictures? Yeah, kind of. Is it because I’ve been anxious about writing in general because I get the feeling that I should be working on my BA thesis instead? That too, definitely. It has been a rough couple of years.
The Physical
A bit more on growing weaker. Aside from the usual vulnerability to infections due to my medication, GVHD has been kicking my ass by giving me sclerodermatous skin. An autoimmune disease to match an immunosuppressed individual. It, thankfully, is not the regular kind and it just applies to my skin. Some parts of my skin where it applies can’t grow hair and have abnormal skin pigmentation. Oh, and the main thing is the hardening and tightening of the skin. It started in my neck and kept creeping elsewhere for a good while before it was noticed. My neck kept tiring increasingly fast and I started having trouble walking longer distances. The movement of my arms and legs is rather inflexible nowadays. I stayed at a rehabilitation ward for a couple of weeks to regain some walking ability, but I still could not walk more than a hundred metres or so. Still can’t – I have to use a mobility aid to move any real distance when I’m not home. Still better than how things were until two years ago. At least now I don’t need to have a wheelchair to commit to a longer distance. All this has been treated via various methods with some success. Recovery is a very slow process, but there is improvement nonetheless. And whenever there’s been improvement, it’s been followed by setbacks undoing the progress gained in walking ability. Repeatedly. For years. I’m doing very well this year though, as I’ve been given asthma medication to help with the pitiful state of my lungs (which then makes exercise easier). Will have to see what the rest of the summer brings.
Continue reading