I want to vent some steam here because over the past few weeks, as my symptoms improve, I've experienced the opposite from what I would have expected from those close to me. Maybe, they have more expectations of me, perhaps they think I am better, and therefore completely capable now. I don't know. It's a bit boring having to announce one's improvements all the time, it would be nice for others to acknowledge progress instead of mounting further obstacles in the way. I really understand with a frightening earnestness how inward-looking so many people are. Perhaps, I was like this before my stroke, but now it's quite apparent that in the early days I felt like a lame animal cast-off from the rest of the pack and pettigfogged for not keeping up with the rest. It's worse now that I am not completely shuffling around feeling my way through space, because people just can't adjust their behaviour to the new me. If I can't do something, I have a reason for it, I've had a stroke. If I can't do something tomorrow, I have a reason for it, a stroke. I wish I could do what was asked of me at the drop of a hat but I just can't. For some reason, the "I can't" doesn't make any sense to them. If it vexes them, then I say to myself, well, how do you imagine it makes me feel? I am not being indolent or obstinate, I just can't do it. I can't walk from that room to this room right now to do that simple task because I feel as if my body is going to shutdown, and I need to rest urgently. I've had times when people have asked me to do some nugatory task just as I was heading for a rest, and I've graciously pushed myself to do it, and felt the worse for it, but that's all right, they're not the one in bed now feeling like their body and brain are about to cave in. I understand, it is good to challenge yourself and to push yourself but it has to be done shrewdly, and within reason. But more importantly for the other person to appreciate the effort involved, sometimes a gentle slap on the shoulder, or a positive affirmation can make the next hour of recharging the battery worth it.
If I am sitting outside, seemingly doing nothing, chances are I am planning the next few hours of my day. It's only been very recently I have been able to do this before noon. If I haven't done something in an allocated time, that's because there's lots of my own things I can't achieve in an allocated time. It just baffles me. I don't get, "It's great to see you up and about sitting outside." Instead, I get, "Oh, I see you're still here sitting doing nothing?" Not everyone has been like this all the time, and not everybody is like this, but the further I try and push my recovery for the better, the easier it seems I'm shot down, almost as if people would prefer I remained in the more chronic physical and mental state that I was because that easily spells out the bleedingly apparent symbol of an unwell person. This kind of banter in the past would have drizzled off my back like a duck, but when you're trying to sort out a multitude of mental processes in alignment with dysfunctional physical processes, it is scathing rather than replenishing. It comes across as priggish instead of playful.
I haven't become more sensitive, but the part of my brain that processes basic emotions (the cerebellum) has been damaged, and as a result, I am also susceptible to whatever is being fed to it, emotionally. To be honest, it wasn't always like this. Early on, people kept out of my way because I was barely functional, but now it seems they can't seperate the subtleties of recovery and impairment. For example, I may look fine doing the washing-up but my legs are actually sore and a bit shaky, the water in the tub is making me nauseous, there are things going on in my head that I am keeping at bay, and in about half-an-hour I'll start huffing and puffing, and need to rest. The response might be, "Can you also dry them?" This is an illustration in point, no one has said that to me, but it is the kind of the thing I am getting from a lot of people these days. It's indicative of the attitude that "No you can do this, you can do other things, surely." The disappointment when it is not the case is palpable. An alternative would be, "Great job with the washing-up, could you manage drying or is that too much for now?"
Anyway, I've contacted the Stroke Association services team because I feel at this juncture I need some emotional support. Sometimes, I wish I could gather friends and families for a chat with a stroke expert to give them all a good lecture on what it is like, but unfortunately, it seems that unless you've actually had one, empathy and pathos are just not high on anyone's lists unless they can see the damage and feel it vicariously. This I feel is, sadly, lacking in most things in this world. It was Aldous Huxley who wrote, "You can't get anyone to see through your own eyes. The very best you can do is to encourage them to use their own."
Sorry about a long vent but I feel like I've hit an unexpected hurdle in recovery ... other people.