So in recent months things have changed quite drastically for me, not only has there been the number of hospital appointments, but also things at home have changed. The usual routine, the amount of help available, it has all changed.

I still live with my parents, one has always worked, the other has always been around to help me out, keep the house and the like. But now that’s changed. Don’t get me wrong they are both still here for me as much as they possibly can be, and they do an amazing job, given everything they have going on, but it means I am spending more time on my own in the house.

And truth be told I’m finding it a bit hard. Sure it’s only a for a few hours each day that I’m alone, most of the time, however it’s a few hours where I’m restricted to staying downstairs (admittedly mainly through my lack of confidence on the stairs), to find ways to pass the time which always seems to go slowly with no one else in the house, and generally keep myself entertained.

It has also resulted in me doing more around the house. Granted it’s still not a lot in comparison with what a healthy person would do, and it’s only a tiny bit of the housework that has to be done. But it’s a big deal and has quite an impact on how much else I can do.

I’m doing my best to pace it all out and make it manageable with my physiotherapy routine, but obviously hospital appointments blow it all out.

I’m also finding I’m getting lonely not having anyone to chat to during those times. I used to long for the times I was home alone as it meant I could get some peace and quiet and much needed rest, or catch up on shows I like that no one else does, but now it seems there’s too much of it, or perhaps it’s more that I never know how long it’ll be and thus can’t plan things to fill the time as the things I like to watch on TV and DVD aren’t what my parents like, and if I start an episode I hate switching it off knowing I’ll have to go back to the beginning of the episode next time I get a chance to watch it because I won’t remember what happened!

Perhaps I’m just someone who can’t be pleased? But life at the moment is really difficult (and I’m not just referring to my health when I say that), and spending so much time on my own I want to keep myself busy in order not to think about it too much. Believe me, it is possible to have too much time to think. But I can’t always keep myself busy without overdoing things, and I don’t want to do that, I know that slow and steady is the way to manage all my conditions.

I’m sure, as always I’ll find a way through and adjust to the changes which have happened. It’s just going to take a bit of time. Learning how to balance everything else that is happening on top of the physiotherapy routine, and hospital appointments when my energy levels aren’t exactly at their highest was bound to throw up some challenges along the way. It’s just proving a little more difficult than I expected it to be. And lonelier too.

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