Flare-up Ramblings From the Disabilities Manager

So, one of the few perks of being me, if you can call it that, (the ADD helps with this) is that when my brain is braining, I can do everything… All the things… All the stuffs! I can run the Disabilities Team, put together the Online Festivals, run the moot, cook elaborate meals for my family, go to my burlesque classes, go to the gym, write my novels, edit other’s novels, help with Pagan Dawn, support the community, raise money for charity, be peer support for an organisation I support for women with serious pregnancy complications and everything else you all see me doing (let’s face it, I’m not quiet about it; am i? I’m not all that quiet about much!)… But then, the time inevitably comes when I can’t do any of it… I can’t cook, I can’t walk, I can barely talk or type… I started writing this on the 28th of June (It’s currently 4am and I can’t sleep due to a persistent pain in my lower back, my hips and now my right leg… Which is bizarre and it’s usually my left leg…), I’m not sure when I’ll be able to finish it… Perhaps I should but dates throughout to show when I’ve written which bits…

I constantly have people suggesting that I slow down, not take on as much, only focus on one thing so I don’t overload myself… But my brain doesn’t work that way. The flare ups, the emotional and physical crashes that I get every few months, I get them whether I’m busy or not! So… While I’m able, I like to be busy and my brain works best when it has a lot to do. I can never concentrate on one thing for very long so it’s best if I do twenty minutes on one thing then switch to another then onto another until it’s all done. Took me years to figure out that was how my brain worked best and I’m very grateful for the knowledge, for see how well I work now I have this gift?

(Currently 8:50 1 July… The children are still asleep and I’m not in all that much extra pain today but my mind is more erratic than usual and I’ve been awake since about six with the same infernal song stuck in my damned head! Don’t even know what it’s called or the lyrics… Just a tune that I partially heard on the radio… The same few bars of the intro before it was turned off in time to listen to Paul O’Grady last week…)

I’m given a choice… Do nothing ever… Or do the things I can, when I can and then when I crash… Hope that those around me care and understand enough to allow me that time to recover from being all the crap that is me… I went through a phase… A few years, in fact… Of doing nothing. From 2013 to 2016, I sunk into a pit of self pity and didn’t engage at all with anything or anyone outside of the small bubble of my direct acquaintance… Was I happy that way? It was less complicated, that’s for damned sure… But I don’t think I could ever be happy unless I was serving my community, my country, my family and my friends…

So, I made the choice and I’m very lucky to be surrounded by the very people I’d always dreamed of working with. People who understand and tell me it’s alright to crash and take time for me and that my work will be right there for me when I get back.

(Currently the 4th of July – 3pm, just before the kids come home from school)

Just had a letter from PIP, I have an assessment a week on Thursday… Which is just what I needed when I’m in the midst of a rather scary flare up. Part of me is grateful because I always seem to be at my best for these assessments and find myself having to explain why I’m so coherent and able and trying to demonstrate how I am at my worst… They’ll likely see it for themselves this time… But the other part of me is very scared right now. I’m likely going to lose the tiny bit of PIP they “awarded” me last time, which was less than half what I was rightly entitled to but I was too weak to fight them… And this time I have no option, I’ll have to fight!

But also… This flare up isn’t like the ones I’m used to… Always before they centred around a particular side of my illnesses; the pain or the mental sluggishness or the forgetfulness and all the other stuff… This time… I’m getting it all at once and I feel myself truly drowning in a sea of pain, confusion, fear and depression… Always before I could focus on something to keep my mind steady until I could come out the other side and say “I’m alright, I’m back. I’m ok.” This time, I can’t hold onto anything… No lifeboat, no lifejacket… Not even a polo!

I’m sorry if these ramblings make no sense. Each sentence is struggling to get out amidst the sludge that is my brain… I keep saying sludge and I usually hate to repeat myself, which should give some indication of the lack of brain I have right now…

So, while I tread water in this sea of sludgy panic, I hope that you can forgive me when I’m not around and hope that you won’t think less of me for my weakness… And I hope you can trust me when I say that I’m fighting like hell to get back to you all…

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Disabilities Manager

Disabilities Manager for the Pagan Federation

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