Living Like This Forever

HI everyone,

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.



13 Replies

  • Hi babebatista

    Thank you for such an open, frank and honest appraisal of how you see your life, and I genuinely wish you can somehow find true solace and peace from what you have been told? I do not mean acceptance but the hope of a better tomorrow, as hope is the greatest illusion that humanity can have. Hope of winning the lottery, hope of becoming rich and famous, hope of being loved and loving and hoping for all our wants and desires to be catered for and met ... ?

    There is the old saying that the truth hurts, and it really does. This person who told you that you will never get any better has confirmed that truth that we all find so difficult to face and admit too, and yes, the truth really hurts.

    I want to wish you all the best for the future, no matter where that future takes you and what it has entailed for you? Just remember that you are an amazing and wonderful person even if you cannot be a supermum anymore, as your family will always love you just the same!

    All my hopes and dreams for you

    Ken x

  • Hello Ken,

    Thank you so much for your kind words. I truly understand where you are coming from. Hope sometimes is all that someone can have and we have to take that hope and keep hold of it tight.

    May your future bring you happiness. Gentle hugs Ken,



  • Hi there, sorry to hear you have been told you will never get better...its a horrible thing to face. We all kind of hope one day we will wake up with no pain, and back to the person we were before, as time goes on we forget what normal feels like. You have a lovely family, and you sound a very strong person to deal with the daily pain. I wish you all the best xx

  • Hello Naylee,

    Thank you so much for your kind words. It really means a lot. Gentle hugs to you xxx

  • Sorry to hear your bad news but remember new treatments are coming out all the time so there is hope, You look to have a lovely family to help you.Do you mind me asking what is the nerve condition you suffer with? Wishing you well x

  • Hi p1pp1ns,

    Thank you for your kind words. They haven't given it a name except that it isn't a neurological but I think it's down to my B12 as I have to have injections for that every 3 months and that is meant to help with nerve pain. It could also be down to the fibro. I can only describe it as a pins and needles type feeling but it burns or is ice cold and hurts so much. It goes right to the tips of my fingers, toes, and all over my body. Everywhere including my joints so I don't know. My B12 level has been borderline for quite a long time. I asked my doctor what I could change diet wise to make it better but she said that changing my diet wouldn't increase it. So I started having the injections. I was having them quite a lot and asked the nurse how long I had to have them for and she said for the rest of your life. That's all that I can really say about it.

    Thank you so much for getting in touch with me.

    Gentle hugs



  • Really sorry to hear all of this I had no idea it could be so bad.How can they say you will never get better some people do recover maybe you will be onr of the lucky ones.I do hope so its awful to think of you like this x

  • I know how you feel sweetheart!!! Have you tried a pain clinic? It doesn't take all the pain away, but does help with making the pain and life a little bit more bearable. Hope this helps honey!!! Hang in there, xxx Mitzi

  • Hi Mitziblue,

    Thank you so much for getting in touch with me. Yes I have been to a pain clinic and they were happy with how I am managing my pain which is fine. I think deep down inside I've always known but then hearing it from a professional it's like that confirmation. You know what I mean? I think Pain Clinics are really great I think it's just having that confirmation it makes things sound so real.

    Gentle hugs for you



  • It's hard sweetheart, but it does make it so much better to finally hear it out loud that you aren't crazy after all and it's not in your head. We have come along way sweetheart!!! You hang in there. It get's tough but we are strong we just didn't know how strong we were. Take care honey!!! xxx Mitzi

  • hi babebista it is hard coming to terms that you have lost your old life &you grieve for it but we just have to carry on and make the best of what we now have take care xxlilian

  • Hello Lilian,

    Thank you so much for your kind words. I really do appreciate it.

    Gentle hugs



  • hello babebatista

    so sorry you are having problems, it is so hard to know you will always have the pain, but so many of us are sending cotton wool hugs, thinking of you rubymum xxxxx

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