After a lovely if slightly busy weekend seeing friends and a wedding venue, I admit using all the energy having a "life" would have the inevitable cost I just didn't quite expect it to land me in bed since Sunday evening.
Its a curious thing the fatigue that is very common with fibro, bone weary exhaustion that no matter how much you rest it doest go away when your spoon drawer is empty. You'd think sleep would be on the horizon, sadly not the case - as soon as its bed time and I'm feeling even more uggggg..my body decides its time to release all the pain its stored for the day, and my brain goes hot and jingly leaving me unable to sleep for more than a couple of hours 1 thing feeds the other and so it goes..there is more to it, the muscle spasm, not being able to concentrate very well,. talking is a nightmare.
I have never thought about it before, but while i can type away in short bursts the act of conversation becomes impossible - even the simple act of deciding what to have for tea reduces me to a gibbering mess of incoherence or understanding summoning the mental strength to do more than "i don't mind love you choose" is hard.
Its January, cold, miserable and Ive managed to avoid prolonged stints in bed for a few months - yay she says hollowly like its a great achievement. Lovely Man as ever is brilliant, i would be a unkempt hungry woman by now living on cereals - I'm currently banned from using the microwave after scalding my hand with soup my only attempt at fending for myself..resulted in trashed kitchen, him dashing home from work and me narrowly avoiding a trip to A&E - we decided i was better off with a sandwich
Its not all bleak - despite the inability to watch TV, talk, or listen to ill informed people trying to justify cutting the poor adrift without a life raft and assuming it will be ok on radio 4..so how does a spoonless wonder like me occupy herself...
Online - I am struck and finally you say she reaches her point, how on earth would I have coped before the interweb. I seriously don't know, and not sure i want to answer it either. Would you be shocked dear reader to know there are probably 10 million people in the Uk from young and old and all shades in between we are everywhere yet nowhere..very often invisible or in denial..It was only when I became chronically sick did i really think about it - despite working with people in the community for years. Im struck now that very rarely did i work with people who were sick or disabled after all where to find them - I could hardly go in to their bedrooms now could I?
The last few weeks galvanised by some brilliant courageous people the "disabled and sick community" have come together, like all people its made up of individuals collectively doing something - the Internet and social media has been embraced and used like never before. many have come out of the shadows and raised their voice. this week Ive been tapping away and collaborating with people i may never meet to use skills i had thought were left behind the day I stopped working - deciphering a consultation document - you might think thats a tad dull but it has energised me in a way I didnt believe possible, i might not be able to make soup safely but i can still do something be useful and have a purpose.
That purpose is to contribute towards the efforts already being made, so people who it really matters to can have their voices heard, can participate and be part of a community they may never physically see. The view from my bed is suddenly bigger and brighter than i thought. I wont be in bed forever and tomorrow this flare may go, hey i might manage to get back to being a sofa person next week. I have places to go and people to see..and some of them are beyond my front door, not just inside my lap top.
**I save energy for the weekend so i can spend quality time with lovely man its the trade off we make sometimes when the spoons are there you use them, because they perish quickly its a little boom and bust.
***This is like the confessions of an ex community worker. I spent a lot of time working hard to ensure those furthest from the labour market had a chance...except I and others missed a trick in reality we talked about poeple lacking skills, and edication as barriers we very rarely talked about people who were sick or disabled. Something id like to change. - perhaps i need 2 blogs not sure