Life without spoons

After years of “coming to terms” with multiple disabling conditions, I don’t often get really down as a direct result. I used to, a lot. And it’s been probably the biggest change to my once busy, social and work life. Not something I found easy to accommodate.

This month has been one of those where I have been forced face to face with the reality of a life without spoons. And it got to me.

Have been very low, grumpy, introverted, desperately wanting to avoid contact with others (not possible when running a group) sad and even tearful. I’ve felt lonely, alone, excluded and downright fucking angry that my need to pander to these shitty diseases stops me from doing a whole host of things, including fun, social activities. Instead I am forced to retreat into this chaotic mess of a home that I don’t have the resources to clean or maintain. Resentful of my choice to do “the right thing” to listen to the internal screams of my body and go home. Not go out, not see friends, not join in on the fun stuff. Being left out, allowing friends and former social comrades to overlook me again & again.

It’s hard to be grateful in the face of all this, or to think positively. I’m repeatedly catching myself thinking horrible things about me. Getting depressed at bad thoughts that serve only to bully and demean me, able to stop or at least pause them if I notice, but not equipped to rebound from the negative consequences of the abusive words of my personal head demons.

In contrast, I did have a completely fantastic experience recently, something I’ve wanted for years. A daytime rave!! For a while remembering it was able to give me a joyous feeling, it’s definitely one of the highlights of this year.

The happiness that this brought me has no doubt outlined the later feelings of no longer belonging.

It reminded me of just how good things used to be, when they were good.
It reminded me of all the friends I rarely see anymore and miss terribly.
It reminded me of how I’m not included in their lives anymore when it comes to a great many things.
It reminded me that I’m just not capable of doing even a fraction of the things I want to do, virtually none of the enjoyable social activities, even less of the energetic cathartic bliss that I found (find) in things like dancing for hours or pushing myself hard at the gym.
It reminded me that I really REALLY miss dancing for hours.
I miss having the ability to do a million things a minute.
I miss the comparative health that I had.
I miss the body that I regrettably spent my whole life hating, wishing it was different, thinking it was flawed, believing it was less than it was.

I am so sorry body. You are beautiful, you serve me as well as you possibly can even after I abused you for years, you have always been there for me even when I tried to destroy you, you are perfect.

Saying sorry is not going to bring her back. But it’s a start, and there’s always room for improvement.
I still fantasise about what could have been despite knowing it’s not productive or healthy. Living so much in fantasy or the past not only prevents me from moving forwards but also drags me down into despair.
Stuck occasionally in this dark place it is difficult to remember that I AM making changes, I AM slowly improving and I AM doing things to attract new & healthier relationships. I’m yet to make any new friends and at the going rate it’ll be years before I do. Which is part of the problem. Time.
Everything takes so much time, my patience wears thin as does my resilience to being a creature of solitude, of chaos & mess and broken promises.

I retreat back into my cave and hope to return with more cheery news.


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