I really know I should take notice of this – BUT just can’t…. Im still fighting the diagnosis, the symptoms, the attitudes, everything -& I don’t think I will ever stop.
I’m already fading away – I’m a ghost of myself so there’s no way I’m gonna accept it…. Do you understand?
Fibromyalgia – Getting on my every last nerve!
(all 46 miles of them)
Behind The Scenes - Life as a Spoonie 
God do I understand! I can’t pretend to know how your process will go but I can share a little hope and pray that maybe it helps you.
I hit a place a few years ago where I felt like I was fading and life would never get better and that I was just fucked. I swung so quickly from denial to anger to depression and back again that I gave myself whiplash and just stopped dealing altogether. I chose to live in this dark place for years instead of accepting what was happening to me and trying to find all the things I loved and could still do. It almost killed me. Literally. No one can make you leave the place you’re in right now and I won’t demand you try my suggestions the way people did to me. But I can tell you that finding things and people that I truly enjoyed and could still be a part of and choosing to actively be a part of them, changed my life. I love writing. So I write everyday. I love music so I listen constantly. I love coffee so I grab some with friends when I feel up to it. So many things have been taken from us and there is probably still more to come, but only WE can choose to not do the things we still CAN do. The choice will always be yours. The things you enjoy and can still do will always be yours. How you handle this will always be yours. Don’t let the disease break you. Break it. Refuse to succumb and live and enjoy your life just to fucking spite it 🙂 it almost always gets better. Support groups (even online ones) can help. Knowing you’re not alone can go a long way sometimes and respecting your limits/not pushing too hard will save you a lot of pain (took me years to learn that one). All you can do is give it the best you’ve got and on the days where you can’t do that, it’s okay. There is always tomorrow. Just live ONE day at a time and focus on doing at least 2-3 things you enjoy each day. I hope you find a way out of the darkness. Sending lots of love and light your way 🙂
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HI MisfitSpirit – Luckily, This is my release for the darkness / fading ghost side. To every one (including my kids / family etc) I am fine, Happy & coping extremely well. Even to the point that they completely disregard me on many occasions LOL. I (Through he internet) have a thriving community of friends & charities I help (Its amazing what you can accomplish with speech recognition software & a Laptop at 1am, on painkillers) – No one would know any different – its assumed you “work” 9-5 & have an active life…. I am happy living these two very different lives at the moment. BUT about 3 weeks ago I realised I was getting angry, both with myself (Shouting at myself, calling myself names if I couldn’t move) & at family, because I felt like they just don’t care (Of course they do, but I’m a great actress and Ive fooled them too). So I created “LifeAsASpoonie” to vent…… I tried a “Pain Management Group” – It sucked – When I can write about it without being really angry, I will one day write about it & maybe you’ll see why I stopped going XX _ Anyhoo, I’m sorry this is a long reply, BUT wanted to explain, I am fine – Yes I think I am probably depressed in the true sense of the word – To the outside world No one would EVER guess it, BUT I think that’s OK…. Its valid for me to be depressed… BUT at the same time, I have here to now explain my feelings too & great people like you who care enough to comment – Thank you so so much X
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Acceptance comes and goes for me, I was just trying to write a post about it actually, but my brain is kind of fried from pain and exhaustion. When the flares come and end quickly, I can stick with the acceptance and the resolve. But when the drag on and on and on…I quickly lose my resolve. I wonder if I will ever permanently accept this as my new normal or if I will just have moments of it.
I do understand…totally!
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