An Intro for the Willing Listener: 21 and Six Years a CFS Sufferer

You are a credit, sound so strong. It's good that you haven't got the severe chronic pain as this is incredibly debilitating

Keep up the positivity it's humbling 👍

Hi Kate,

So sorry you're stuggling with this illness.  I know what its like because my husband has been struggling with it for over 27 years (although we're not exactly sure when it all started).  But we do know that in 1989, he became totally bedridden and unable to even get out of bed and to the bathroom without falling down onto the floor.  He was only in his 20s at the time, and our two daughters  were 4 and 7.  He hasn't been able to work at all since, and we were forced into bankrutcy and lost our only home, and were forced to live with a friend.  It took us over two years to get disability, and had to live on welfare until it finally came through.  For years we couldn't even get decent medical care due to lack of money and also the fact that most doctors thought it was all in your head.  Some doctors still feel that way, but a lot more believe in it now than did back then.  So we certainly understand and can easily relate to how you're feeling with the half life and lonliness etc.  One mistake my husband made that you can avoid is pushing yourself too hard.  He pushed himself so hard that he would literally collapse down onto the floor due to severe weakness.  People thought he was lazy but we knew otherwise, and that he was anythig but lazy.  It sounds like you have been blessed with a wonderful and understanding family (which, believe me, is extremely rare)!  Most families just think the person with CFS is lazy or not trying hard enough, but they're so wrong and cause so much damage to their loved one who is in need of so much love and understanding.  So anyway, be sure not to push yourself too hard because that will only cause you to be sick for much longer, and be sure to be thankful for what you have, such as an understanding family and friends from a forum like this one, and also for the fact that you can still work and go to school etc.  I didn't write today to make you feel bad because you're doing better than patients like my husband - I wrote to you because I can really feel for you, and my heart goes out to you, and I wanted to encourage you in any way I can.  Your message and struggles certainly resonte with us, and you can write to me at any time, with any questions or concerns, and I will be a good listener.  Take it easy, Sandy

My problems started at 17 so I know how you feel, I dropped out of highschool spent a week in the hospital and became house bound for 6 months,never heard from my highschool friends again,some I had know from grade school, I did finish highschool by correspondence,when I was 18 the doctor though I had mono but all the test came back negative. I have had 3 relapses in the last 15 years the longest was 6 years, I did end up walking with two canes for 2 years and would use a wheel chair on bad days. I am 58 now and struggle to walk 100 meters, I have list all my friends in the last 15 years the only friend I have left is my ex wife,we have been divorced 20 years,she is gay and my bff,she suffers from CFS so she understands,my condition is better described by the new term,SEID,systematic exertion intolerance disease,iit is a new term propose as a name change for CFS. I did post information about it in this forum, I do know how lonely this condition can make you feel but you do sound strong so hang it there,also my condition is triggered by the flu,there was some new research published in August listing the triggers for CFS and also that the cells go into a protective hibernation state which explains the exhaustion and fatigue, I did post that in this forum as well, I hope that all helps,take care,rest is the only thing that seems to help me recover, I find it is never a good idea to push to hard,it only makes me worse

Hi Kate,

I think you've hit the nail on the head when you say how hard it is to remember what life was like before CFS/ME. It's hard, like looking at photos of someone that looks like you, seems to be doing things you'd like but, there's no memory attached.

I think it's difficult no matter what level of CFS/ME you have. It sounds like you have adapted with yours to a degree of what others perceive as normal. I can still hear the struggle, the loss, the pain of having this condition. Do you have people telling you how good you look as you waft through life like a zombie? I find that part quite hard. You use the term invalidated and it's exactly what seems to happen with this condition. No one can see what a battle each day can bring with this condition even when you are able to function it's not at full power.

Just wondering what the trigger was for yours. Your spirit is admirable and I hope that you can one day again enjoy your life with vigor and determination.

Best wishes

Beverley

Hi Kate

I've read your post now a few times. I've pondered what to say and also how I relate. I 've had my illness now for over four years. I really hear how different your life is now. How it's a half life. I miss terribly the vivacious, capable, smart, full of life person I was. Now I struggle with overesensitivity, depression, IBS, Doctors appts, simple exercise and exhaustion after socialising. I've felt recovery, only to topple over becuase something triggered some old trauma. I now contemplate what it actually takes to totally heal. I'm tired of talking about it and not being taken seriously. I cannot begin to imagine this at a younger age. Yet I also heard some gratitude for lessons, but that doesn't take away the pain. I'm so glad you're here sharing this as we all need to hear that we are not alone. And we are not. I'm looking at introducing new aspects of joy into my life. eg like joining a life drawing class. I've also joined   a local QiGong class. Which is really gentle. Today here it's sunny. I might try and go for a walk in the sun. Whatever works. Be super kind and one last thing, there needs to space to grieve too. That which we have lost. Still working on that one.

Kate, you may well find much support here. I only recently had my diagnosis confirmed (last Friday, actually) and am quite accepting of it. But I am 52 and at least am grateful for having had years of relative fitness (I rather wish I'd done a lot more with them, however!). It does seem that those who get CFS at a young age do stand a better chance of a better quality of life - some even recover altogether. That may or may not happen but I only wish you well. I had a body scan meditation on the well known internet video website suggested to me as 1 way of dealing with this condition and it certainly seems to have helped come to terms with it, while still believing I will improve. Something similar may well help you.

Hi Kate,

I feel your pain. I first got sick at 18. Was bed ridden for two years. But then I had almost 5 relatively good years. I had constant sore throat, but I was so exhausted as not to be able to function. At 26 I got a bunch of infections, and since then I never got better. It's only getting worse every year. And sometimes I completely loose the sight of anything positive in my life. The worst feeling for me is not even the fatigue, when I feel I am trapped inside my body and can't move, and nobody know that I feel dead inside, that's how severe the fatigue is at times. But the worst for me is not having my brain. I forgot what it feels luke not to have brain fog and to think clearly, be sharp and observant. I was all of those things, and now I feel like I am hiding a severe cognitive disability. At times I can't put two sentences together. But .... I still want to do every activity, I plan and sign up even though in 99% I can't go anywhere, can't socialize. But once in a while I do a gentle yoga and my body doesn't punish me afterwards. I learnt that I can go to wellness and yoga retreats. The travel there almost kills me but within days of gentle yoga, massages, special diet, acupuncture, etc. I feel so much better. So there are still things to look forward to. And thank you for reminding me that I am not alone. I feel that nobody, who doesn't experience this, will ever be able to understand. But you are here, and you do understand. And maybe in a few years they will finally discovery the cause and the cure!