Adjusting my mind

I ‘ve spent a good couple of months trying to get my head around what normality is, now.

First, there was the sudden jump to being able to do things. Now, I want to be clear here – the barrier to me doing things was physical capability, nothing to do with what I thought I could do. In fact, I was constantly doing far more than I was physically capable of, hence all the crashing; I was always pushing it. But the best solution to, if not recovery then stability, is to not overdo it, so I’d been steadily trying to pace myself. Suddenly having that taken away… well, it was amazingly freeing, and at the same time just bizarre. It still feels bizarre. I suppose the best analogy I can think of is that prisoners might have the same reaction, having been locked up for so long and then suddenly able to walk free?

In any case, I had to fight with myself not to freak out when I had something to do every day of the week. I’m busy in the morning, and I need to do something in the afternoon, I can actually do both. Yes, I need time for rest, and adequate sleep, but not to the extent of not being able to schedule more than one thing a day. And boy, is that scary.

Just the number of hours in the day is something strange to me too… Around the time I got better, my general day schedule had me getting up around 3 or 4pm, and going to bed at around 11 or 12pm. That works out at about 8 hours of ‘up time’, in which I could manage a couple of light things like browsing the internet or watching a DVD, or a short amount of something ‘strenuous’ like crochet if I was especially well. The exact times and activities varied from day to day, but that’s generally what it came down to: 8 hours, one activity a day.

Suddenly, I can get up at 8am and go to bed at 11pm, no problem. That’s almost doubled the amount of time I have, not to mention how much more capable I am during those hours. Yet, I still thought of my day as that 8 hour block, and it’s really hard to get used to having more time than that. I feel physically, after around 8 hours, like that’s my day done – even though I’m not tired – which has resulted in things like coming home from work at 5pm and feeling like I’ve used the whole day up. Whole day? I’ve another 5 or 6 hours, that’s practically a whole other day still to go!

I’ve resorted to counting, physically, how many hours I have left before bed time, since I can’t trust that sense of time right now.

In fact, working out how to fill that time has been kinda strange too. What do I want to do? I feel like I have no time, but I have loads so I don’t plan for it and then end up thinking what do I do now? I don’t want to plan things in the evening because they take up a whole evening… but they really don’t, when it comes down to it!

Then there’s dealing with normal fatigue, normal illness. Is this a relapse? Am I getting worse? Or is this just something people just deal with anyway? I have no notion of what ‘normal’ is, any more – but fortunately quite a few people who I can double check with.

A strange juxtaposition assaulted me, too: The thought of the endless days of nothingness stretching into the future was one of the more terrifying things about being ill, but now that has been mirrored with the endless days of having to do things. I jumped between “I have nothing to do, how do I cope?!” and “I have too much to do, how do I cope?!”. I think it was a general fear of the future, thousands (hopefully) of unknown and unexpected happenings weighing down on my shoulders, and I have to deal with all of it. It felt too much to bear, all those days. It still does if I focus on them… but that’s not how we live. We don’t deal with a lifetime in one second, we take it day by day, and forcing my mind to focus just on today has been a great struggle. I’m sure I dealt with it fine before, but then before, I thought I knew the future (for some reason), even vaguely.

And lastly, twinned with that, is the great unknown of what do I do now? I still don’t know, but prayerfully dealing with it a day at a time seems the way forward for that, too. By that I don’t mean not thinking about the future, I mean accepting that all I can effect is what I’m doing right now, and just dealing with that. If I need to plan or prepare for tomorrow, or next week, or next year, then I will – but I can’t afford to worry about it. There’s far too much to potentially worry about in my life for me to do all that worrying in this second! Or, ever!

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2 responses to “Adjusting my mind

  1. I love that you are writing about the acclamation into the “real” world. Most blogs kind of go quiet after people get better, so you just have to assume they’re off living the life. Your writing has helped me to realize that I don’t just need to think about “when I’m better”, I need to think about the transition into better. For example… how will I go from having no real significant structure to my day, to structure? How will I get used to doing more in a day than I used to do in WEEKS without feeling overwhelmed? It never really has occurred to me to think about it until now!

    • Yeah, I really didn’t think about this stuff either and it can be really hard to get used to – hopefully it is comforting then if you struggle to go through the sudden change to know that you’re not alone! I’ve connected to a couple of other people who have recovered suddenly and they’ve had the same kind of experience trying to adjust, but I would expect that recovering over a long period of time wouldn’t have quite the same issues here either (though no doubt that has its own set of ‘interesting’ issues to content with).
      Thanks so much for your feedback on this subject as a whole, too!