Does having ME/Chronic Fatigue generally shorten our lives.

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Hi there! I have had Chronic Fatigue now for over 14 years, I was 49. I was diagnosed just after I had my thyroid removed. I have had all the tests you can possibly think of and I've had all the usual illnesses connected with CFS  eg. Glandular fever, continued viruses (I catch absolutely every virus going) Shingles etc etc.

I spend days on end in and out of bed or just sitting in a chair. I rarely have what I call "Good days" but when I do I cherish them. I have tried all the "normal" ways of living ie pacing little excerzing etc etc.

I'm Not and repeat Not depressed but I do wonder how many more years I will have left with this debilitating illness. I am now 63 I love my Husband, my family and my grandchildren are my life but I do often wish that when I go to sleep at night I will sleep for ever.

Reading some of your success stories is heart rendering and I wish you all the success and happiness in your lives.

My question is....  Does having ME/CFS shorten our lives or should we still expect to carry living it to its normal conclusion........... Just wondering

 

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  • Posted

    I sympathise, I'm in my sixties too and have had ME now for fifteen years and I know exactly how you feel. I've recently been going through quite a bad relapse after a slight heart incident which has really annoyed me, having managed for some time to live on a plateau that enabled me to live a life and cope with the pain, if one that didn't include socialising or getting out of doors other than for doctor's or hospital appointments.

    I'm not depressed either but I agree, you do wonder at times what life has to offer if this is as good as it's likely to get, especilly as prior to contracting the ME I used to enjoy the outdoor life, being ex army and enjoying fishing, walking and painting outside for a living.

    Those close to us who don't suffer, no matter how close they may be have no  real understanding of what we are going through and with doctors giving little support, it can be a very lonely condition.

    I suppose I keep going by living in hope that one day things will improve or someone will come up with treatments that might help. The days that aren't as bad as others feel relatively good too, even if nothing like the life I used to lead.

    I suppose that I'm happy to carry on as the alternative is worse, so Im in no hurry to shorten my life, in fact the Grim Reaper will probably have to drag me off screaming :-) ... This condition though does make you ask these questions, and other ones that many well people never have to address. So, in many ways I feel the same as you .....

     

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    • Posted

      Omg your life is nearly a mirror image to mine. I used to be so active but now my life seems to be a constant struggle to even get through the mundane activities. My poor husband Mike lives on broken promises. It's always...." Shall we go out somewhere next week"........Only to find I'm no better when next week comes..

      I thought I was getting better at one stage a few years ago, we were living in France at the time. We were living an idilick life....living the dream. It turned into a nightmare I ended up not being able to leave the house. We sold up and came back to the family, I still very often can't leave the house but at least we have them down here( we live by the beach) to stay. It's been a really hard slog to get them to understand this illness which has been stressful in it self but I think they are beginning too now

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    • Posted

      think many ppl with ME/CFS have had similar experiences i.e. living life to the full, great outdoor ppl, high achievers & then bang. in the wink of an eye, all's gone. it feels that someone has pulled the plug, the light goes out & we are left struggling...........................with little help from the experts we have to redefine our lives and look for meaning & purpose in the 'shell' life we are left to inhabit. some ppl do well with finding meaning/purpose with ME/CFS. others don't.

      all good wishes on the journey

      Caitlin

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    • Posted

      I live by the sea too, in a small fishing village in Devon which is one thing that I'm grateful for, The quay is only a few yards away and I can at least sit and look at the water occasionally. ... :-)

      I think the most difficult thing for people with ME/CFS to do is to to really find their base level, which gives them a level state of health and ability from day to day, whatever level that may be.

      From experience and persevering I do know where that is now and if things flare up or I get a relapse due to unexpected factors in life, I can usually revert to the low level of activity that will normally bring me back on track.

      This condition teaches us a lot of things like that and if we fail to take notice of the lessons, we are consigned to the ups and downs that we all know are so miserable and make us so ill.

      People around us do eventually start to learn what it's all about, though I really think they can never fully understand and often they let things slip that makes you realise they don't ... It really takes another sufferer to know and lets face it often we don't tend to meet many as we tend not to socialise ! ... :-)

       

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    • Posted

      That's true Catlin, I lived my youth to the full, well actually my life was none stop until the plug was pulled 14 years ago. Little glimpses of the old me return now and again when it does its Wham Bam thank you mam and back to bed I go. 

      I think one of the most important things for all of us to achieve is "Acceptance". My definition of acceptance is knowing what I can achieve on a good day and what I need to do to get my self back on an even keel when I have had a relapse. Ihave relapses often for what seems to be no reason what so ever but sometimes I do know why i.e my grandchildren staying, it's worth every minute they are here. It is also accepting that may be in my life time that this relatively new illness will not have a cure. Don't get me rong I love "Life" but I hate this "Oblivion"............ It just goes on and on.........

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    • Posted

      love the capsule phrase ''love life but hate this oblivion'' - it just about sums it up nicely. some days i think, maybe i'll find the hidden ''get out of limbo'' card............? most of the ppl that i know with ME/CFS were go getters - get on with life types. it's difficult, therefore, to make that transition to the limbo state of existence. soemtimes ''acceptance'' can feel like giving up, which of course it's not, but there we go.

      Caitlin

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    • Posted

      I too live 2minuites walk to the sea front but I'm afraid I don't often have the energy to cross over my front threshold to venture there even to sit and watch the world go around.

      I agree with you whole heartedly on all the things you have said. I think because ME/CFS is a relatively new illness the "Experts" have gathered little actual knowledge to help us. It is only us, the people suffering from this dibilitating illness know that it is happening to us but we need to know "WHY" 

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    • Posted

      Caitlin I know what you mean about meaning and purpose. That's so important and a good thing that's come from having ME is that I realise it like never before! And goals of course; I have to have some goals, something to aim for other than getting well, so I've continued my degree studies, albeit at a snail's pace. razz
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    • Posted

      Hi Georgia. the important thing is that u have continued ur studies. the pace dosen't matter. in fact going at the slower pace may well mean that u go deeper and end up with a more rounded & deeper understanding of ur subject.

      all good luck with the degree.

      btw, what subject are u reading?

      Caitlin

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  • Posted

    Dear Celia, 

    I am just one person and so not statistically significant. However, I am 74 years old and that is quite a reasonable age to have attained.

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  • Posted

    Dear Celia,

    I am 74 years old and that is quite a reasonable age to have attained.

    I would add that what I lost was the good of some 10 years which were dominated by ME. I count them as my lost years. I have been recovered for about 20 years. It took something like eight years to recover and I do not count these as lost years.

    I hope that this helps. With my best wishes

     

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    • Posted

      Wow thank you for sharing your age.. 74 and counting is a good age  That really answers my question... I don't need to be thinking my life is going to be cut short with this illness. I will be around to see my grand kids grow up... Yay!! George Let me know when you reach 84.... I feel encouraged 
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    • Posted

      h

      How did you recover? I have had it for 32 years now, the last three it has been really bad and the last 4 months even worse.

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    • Posted

      I see that George hasn't replied yet Alison, perhaps he missed the email notification. I know George and his wife Annie. I met George  here and then they came to visit me in my home.

      George could explain it better of course but his recovery was largely due to dietary changes, care from Annie and he said she took him on a holiday and he got better! He's a shining star and hope for us all! razz

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