Like most of you I have had this condition with CFS and a nerve condition that isn't neurological for at least 4 years. I went to see a specialist last week and had a very nice chat with her about my illnesses. I was actually told by an actual health professional straight from the mouth that I WILL NEVER GET BETTER. This is my life. I kinda new that there was a time frame with all of this, one that I knew couldn't be specific. I've always been a bit scared of having this for the rest of my life. I worry about so many things. It does stress me out. My husband however who is also my full time carer just looked at me and said "Well even I knew that". Oh thank you husband. They want me to increase my activity level. This at the moment consists of my husband doing everything for me except going the toilet (even that would be handy......well, sometimes). I'm like how on earth can I increase that. I was told that I need to use my trolley a bit more and go into the kitchen and perhaps make a cup of tea. Yes the trolley helps me to stand up and stops me from falling over. The only thing wrong with this picture is that my muscles hurt that much that I can't even pick up the kettle!!! I want to get better I really do, but I think my body has decided not to let me. Inside my head I'm still the supermum that I used to be. I'm still supermum but I don't have any power left. Fibro, M.E. and this nerve pain is my kryptonite and I'm powerless to stop it. So I will live my life the way that I can now, I have every mobility aid that you can think of and also now have rheumatoid arthritis yay (not). Life is a daily struggle for all of us but I vow to carry on, carry on living because god gave me a family and I owe it to them to fight and just LIVE! Yes I may not be able to do all of the wonderful, busy, stressful things as before but my mobility aids and my painkillers are all helping me to still live my life, it's just a different kind of life. I'm just glad that someone has finally been truthful with me. The way my gp talks to me sometimes makes me want to say to her "Y'know what I'd really love to see you deal with this, I'd really love to see how you get on with this. You wouldn't say to me oh look this is easy. IT'S NOT!!!
All I can do is my live my life and continue to do so the way I know how, with plenty of love, laughter and happiness and just be me and get on and deal with it. That's all any of us can do right?
Sending gentle hugs and lots of love to you all.