It’s going to be a self indlugent rant come pity fest this post I think.
I’ve been thinking a lot about Screw Bronze‘s blog post at Ouch about the silent life of disability. About how some things you don’t get told about – because we try to keep certain things private (understandbly so).
I’m feeling. Feeling a sort of overwhelming sadness, with smatterings of frustration and a hint of “it’s all hopeless”.
Everything which is average for most people – WAS average for me before – is now so all encompassing.
Yesterday hubbie drove me to my dad’s and we drank tea and chatted for a couple of hours. I enjoyed myself, I laughed, I belly laughed, I talked a lot. After 1 hour and around 40 minutes I started to slow down – my speech, my reactions, my comprehension. I felt kind of drunk before I even left the house to go. But I was really drained after chatting.
What I hate is that friends and family feel they have to apologise for me feeling rubbish – that because we talked and laughed and it made me feel worse they have to say sorry. They feel responsible. It’s not fair on them to think that way. It’s no-one’s fault. Being able to chat for 2 hours in a light easy loving way shouldn’t be difficult!
But it is. So where does that leave me? I also asked the question – do I have to offset the emotional boost these kinds of visits give me against the physical price I inevitably pay? When did I get to a point where this was so difficult? Or was it this difficult 6 months ago and I pushed harder (and paid more)?
Argh! What the hell happened to my life?
Next week we have a family celebration back in Wales with hubbie’s side of the family. Just a quiet family meal out somewhere nice. It’s over a week away. Yet hubbie has already mapped out an energy maximising plan for (me) in terms of travel and so on. And I’m already trying to plan how to conserve enough energy to get through it – and with luck to get through it without anyone much noticing I’m anything but normal.
So I’m figuring out when I should have a bath so I can wash my hair to be half reasonably presented on the night. And whilst hubbie has a plan I wonder if it involves minimum number of trips up and down stairs to get changed and so forth. Because that’s my level of detail to conserve energy. We’re not talking a quick sit for 20 minutes to boost the old battery. We’re talking how many time I have to put a sock on and take it off.
It’s one evening. I’ve been planning for a month – so I’ve avoided doing other things in an effort to recoop some energy and avoid expending it prior to this.
This weekend there’s a live arts event I really want to go to. I think it would do me a great deal of good to get out and see different people. To mic in that world for a while. BUT even the effort of getting into the city – just of sitting in the car for 30 minutes and arriving at the venue already seems like too much. Especially with this family celebration to attend days afterwards.
I am seemingly down to one thing/trip a fortnight – possibly a month if it’s “big” (ie. more than one person, more than 2 hours or more stimulus than average).
I hate this. I hate it. How did my life get to this?
I mean the good news is i can hear my moms voice in my head saying that it doesn’t matter what i wear, or how I look or what I am like when I get there – people just want to see me and they care about me.
But there’s all this time you see. This vast expanse of minutes. All this gap between stuff.
I’m starting to think I have been trying to pack my minutes full of noise so I don’t have to face the hollow echo of nothingness. That I’m afraid to let go of being a human “doing” and become a human “being”. I thought I was past that. But maybe not. Or maybe it’s continual adjustment that’s needed. Because spending a week being liad up and unable to do everyday things is one thing, being like that for a couple of months is quite another. And I’m now facing having been like that consistently for many many months and staring at a future with more of the same to come.
What’s been additionally hard for me to bear is that I’m finding it so difficult to draw at the moment. My drawings, my art, was adjusted to fot within my limitations as it was. Now those seemingly have closed in and I don’t have enough control over the pen, or brain to make drawings, or energy to finish it and paint it and care about it.
Maybe I am so busy filling in the quiet spaces (with mainly laptop orientated stuff) I am actually depleting the resources I have and am in a viscous cycle. Or maybe it’s a side effect of the amatriptyline. Or maybe I am getting worse.