Life has been 'interesting' lately. After my aforementioned meltdown I gathered some distance from things, and from Google. At this point in the monologue, it might be worthwhile saying that the long weekend helped too.
The journey of this condition is so varied, so complicated. It's as if all the sufferers are snowflakes in a giant blizzard - or perhaps plastic pieces locked in a tacky snow-globe together, but each in the path of their own fall. Alone.
Hmmm... coincidence my Santorini snow-globe fell and smashed the other day? I think not. Alas, I digress.
I have been forced to take one day at a time, because that is all I can manage. I'm learning not to fear the aches, but to respond to them as they come knocking. The most difficult, embarrassing component is what some call 'fibro fog' - which seems to be a blanket term for general mental fuzziness, used to explain poor concentration, memory loss (particularly short term) and word finding difficulties. Word finding is the bane of my existence, particularly on days when I am short on restful sleep - to feel this word, this word I know, dodging and weaving my grasp, so that I am left wordless, open mouthed, mortified... is hideous. I'm not one for talking too much, so I like to think when I do open my mouth my brain might have the courtesy to back me up a little.
I'm trying to keep things under my hat - but in the long run, I'm not sure it's going to work for me. Trying to maintain a full time job, act 'together' when I just really want to fall in a heap on the ground. Still answering the "how are you"'s with not bad thanks when I really want to scream, fucking awful actually. Part of me still has something to prove. That maybe I'm ok, that maybe I'll be different... that maybe I won't have to reveal my dirty little secret to co-workers, so I can avoid 'those' looks, 'those' judgements.
I want to become informed, become strong, be smart and confident enough to say "ok, that's enough for today". But it's hard. My parents know, but I still don't think they fully understand. I'm operating in the shadows, and sneaking rest where I can - but it's not enough. It's not enough, and I don't know how to say it without disappointing others - without disappointing myself.
The journey of this condition is so varied, so complicated. It's as if all the sufferers are snowflakes in a giant blizzard - or perhaps plastic pieces locked in a tacky snow-globe together, but each in the path of their own fall. Alone.
Hmmm... coincidence my Santorini snow-globe fell and smashed the other day? I think not. Alas, I digress.
I have been forced to take one day at a time, because that is all I can manage. I'm learning not to fear the aches, but to respond to them as they come knocking. The most difficult, embarrassing component is what some call 'fibro fog' - which seems to be a blanket term for general mental fuzziness, used to explain poor concentration, memory loss (particularly short term) and word finding difficulties. Word finding is the bane of my existence, particularly on days when I am short on restful sleep - to feel this word, this word I know, dodging and weaving my grasp, so that I am left wordless, open mouthed, mortified... is hideous. I'm not one for talking too much, so I like to think when I do open my mouth my brain might have the courtesy to back me up a little.
I'm trying to keep things under my hat - but in the long run, I'm not sure it's going to work for me. Trying to maintain a full time job, act 'together' when I just really want to fall in a heap on the ground. Still answering the "how are you"'s with not bad thanks when I really want to scream, fucking awful actually. Part of me still has something to prove. That maybe I'm ok, that maybe I'll be different... that maybe I won't have to reveal my dirty little secret to co-workers, so I can avoid 'those' looks, 'those' judgements.
I want to become informed, become strong, be smart and confident enough to say "ok, that's enough for today". But it's hard. My parents know, but I still don't think they fully understand. I'm operating in the shadows, and sneaking rest where I can - but it's not enough. It's not enough, and I don't know how to say it without disappointing others - without disappointing myself.
"Fear is the cheapest room in the house - I would like to see you living in better conditions." - Hafiz
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