Few hours back I was thinking about how my life was few years back, I was like damn that was literally a different personality as compared to now. My life was so happening. I was such a happy girl with full of dreams nd positivity. And now alone crying behind closed door.
My dreams, hope, future everything seems blurred now. I'm not living my life I'm just surviving it.
I have no hope at all now.
I get that feeling. I'm like a shadow of my former self. All we can do is take one day at a time I guess. Sending you courage and peace.
Yes, maybe someday It'll get better ❤️
Things change and then they change again. Please don't give up hope. I'm not the same person I was a few years ago either. But I have hope that things will get better. Keep searching for answers and treatments there's always new ones out there.
Thanks Marysblue for such kind words.
Hi,
Unfortunately I think this is something we are all going through, or been through. It feels like someone died. You go through all the stages of grief and then you are faced with acceptance. There is no quick route.
Thinking about/talking about pain makes it far worse. There is no magic solution, basically, you have to find what makes your pain better, what lifts your spirits. For me it is heat, I have heat pads, wheaties, hot water bottles, seat cover in my car which heats up and a body warmer that heats up. I also layer up clothes wise and try to remember to move regularly so my blood doesn't settle.
For joy I feed the birds, squirrels, hedgehogs, mice and put fresh water out every day for bathing and drinking of which the local cats also partake. It's another world going on out there and it's really entertaining.
Also, I watch a lot of stuff on utube like dash cam footage, Dodo which follows animals from being rescued to either being released back into the wild or be adopting. I would knit or crochet but my hands and neck will no longer allow this.
Don't sit at home moping, get out, keep moving, yes it hurts, but it's worse if you sit still and then try and move. Gentle movement, keeping warm and mobile, it's a start.
I wish you good luck, it isn't easy for any of us, we all have an idea what it's like and we are all so different, so keep talking, asking for help and trialling things. Research, look up things and enjoy learning about your condition.
Physio/massage also is a godsend if you can find some you fit with.
Best wishes
Sue
Hey HEPO,You're right it's really not easy, but atleast we sld try. Sitting at home and escaping everything will only make things worse.
I keep journaling and write down my feeling to make me feel better, it helps me.
Night twitching 
Anxiety when trying to fall asleep 
Reassurance & Hope NEEDED!
