I’m in two minds as to whether this illness actually gets harder as one becomes better…
There was a time, and there are still many days, when my cognitive function was/is so low that I was/am unaware of just how poorly I was/am.
I am much more ‘with it’ now. So much so that I am aware of my situation and its severity. I am also very aware of how sensible I have to be; how recovery is a full-time job that I never signed up for. Today, for perhaps the first time, I am aware that I am bored. I haven’t felt bored for years. Not in this way. Yes I’ve been bored of feeling rotten but today I am bored of not being able to do things. I want to go and do something (anything!) but know that I shouldn’t because I have plans for this weekend and I should be taking it easy ahead of that.
This is what I mean by things getting harder as one gets better. I can do things now that I hadn’t even dared to dream about…but I can’t do them very often. It’s very frustrating if you let it be.
I am lucky that it’s in my nature to seek out the silver linings but it is only natural and normal that on some days those silver linings appear faded or almost impossible to find.
I feel cooped up. Claustrophobic. The cabin fever has set in. I have to get OUT. This rarely happens but it’s not a nice feeling when it does. On one occasion it got to me so badly that I ended up standing in the street crying, desperate to get out of the house. In the end I accompanied my mum on a trip to Sainsbury’s to keep me sane despite barely being able to walk.
I am lucky that after years of patience I can now go off on my little driving adventures. Not everyday. By no means am I well again and I am not recovered. But I am recovering.
My baseline targets (the bare minimum I hope to achieve everyday) include showering, getting dressed, eating at the table and managing a little drive. I don’t meet any of those consistently at the moment. I might manage one and not the others. I’m getting back into a better routine after Christmas time.
There are days when I have to decide between my physical wellbeing and my mental wellbeing. On these days I tend to push myself physically more than I would usually like to just to save my sanity. I’ll get in the car and just get a change of scenery.
That’s what I’ve done today. I’ve forfeited having a shower and sitting at the table, for getting out in the car. I don’t go far. I can manage up to 20 minutes start to finish now though!
I can’t have it all…yet.
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| Pascal, my noble steed |
M.E. myself and I 