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Wednesday, 23 July 2014

Melded Days and Hope

Lately my days, weeks, and months are melding together. Multiple times a day I have to double-check what day it is, as it never feels like the day it actually is any more. And now that Scouts have finished for Summer, there is nothing to remind me when it's the weekend. Of course, most of my days are the same - resting, reading, writing, resting, sleeping, watching TV shows or films, resting, creating, etc - so it's not a big deal, but I still find it irritating to not even be able to remember what day of the week it is.

The last time time slid like this for me, was the end of my first year at University, one of the happiest times of my life (I was able to sleep and go out when I felt like it, and had just started dating Chris).  Right now there are many reasons why I'm not as happy now as I was then, but I've found this melding of time means it's a lot easier to accept life and my limitations.  I know it's not a sustainable way of living, but for now I'm letting time glide by me as it's both relaxing and rejuvenating me, and has made space for hope to creep back into my life.

Monday, 7 July 2014

A Miracle Day

Today I went to my local grocery stores (using my electric scooter as always). It doesn't sound a lot, but to me it was more like a miracle.

On Friday evening I went to the Scouts meeting as I usually manage every other week. On Saturday I spent 10 hours at a local event which Scouts was a part of. I don't even remember the last time I got up at 7 am. While there I mostly sat in the tent showing kids how to decorate biscuits. Though, to be honest, not many seemed that interested as there were bouncy castles right next to us.

If I had attempted such a long day a few months ago I would have been bedbound for at least a few days at the very least. And that's what I expected this time - I felt it would be well worth it to be a part of a Scout activity that wasn't just the regular meeting.  I am in a lot more pain and more exhausted than usual, but I am still functioning enough to make myself lunch without an issue and still managed to go out today.  I am planning on spending most of this week resting, but I have to admit I'm in a bit of shock at how little my weekend seems to have affected me (of course, I could be saying this prematurely as response symptoms don't always arrive straight away, though for me it is usually 2 days later which would be today).

I know I have been saying to people that I am slowly improving. It's something I am constantly telling myself as well, I think as I still can't fully believe it.  That's why it's so important to document when something like this happens, to show me as much as you that it's true and I really am improving.  Still a very long way to go before I can live any semblance of 'normal' life but I am stepping forward and that's enough for now.