CFS and M.E.

Chronic Fatigue Syndrome(CFS) or  Myalgic encephalopathy(ME) or Post Viral fatigue Syndrome (PVFS) it’s mostly the same thing and I struggle with it.

I am a fifty something (not shy but don’t want to change my age each year) woman who has led an interesting and busy life until this diagnosis 3 years ago.

This condition impacted on my life so much that I have had to dissolve my business, stop any exercise and change my whole lifestyle to accommodate it.

It still impinges on every part of my existence and I’m done with fighting it. This page is written in an attempt to accept these facts.

Promises to self:

  • I will acknowledge my symptoms if only to myself  (I often make light of them in the hope they will become less restricting).
  • I will take the necessary medication (it may then become  short(er) term).
  • I will rest regularly (and not push myself to do more).
  • I will fight for my rights as a disabled women.
  • I will post my issues on this blog (as they are part of me and ignoring them is not helping).

If you find I am not keeping my promises to myself, please do not hesitate to let me know.

Amanda

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20 responses to this post.

  1. Hello. I’ve noticed you and my brain is working WITH fingers just now so… Hearing you and me too..

    I keep on keeping on with this miserable mixed bag of illnesses and only recently had the ah ha moment! I was my own WORST enemy! I saw I didn’t want to see my own frailties nor cared to care for me. A no good very bad (‘day’ doesn’t work! ) …. whatever. I see you’ve found meditation to be most helpful as have I. I gave up on docs a long time ago. Sups, vits & sunshine are good. Now if I could just eat a bit better but… Well, too damned tired for that! I too wondered about your spoon theory!?

    Blessings ~~~~

    Reply

  2. I feel for you, truly I do having had CFS /Fibromyalgia, (Lyme Disease) for well over 20 years, dealing with the ridicule of stupid people for years, that I really wish could have walked a mile in my shoes I feel your pain, I truly do. I had to go through the worst of it between 1991 to 2006, the suddenly like you turned off a water faucet it went away (kind of) as the Dr. said it went into remission but don’t be falsely fooled, it will return.
    Guess what it has, due to a group of those people (stupid) that think you can work 24/7 burning the candle at both ends.
    However this time has effected my joints far more with the severe arthritis I already had worsened by iron overload disease. Generally I tend to be a non resistant person as per my Mennonite roots, but suffering with this and stupid people, this is one time I wish each one could be stricken with this stuff and see if they remain stupid.

    Reply

  3. Posted by dawnhosking on September 9, 2013 at 10:14 am

    I can empathise and I should use your list too – it say it all so well. Nice to meet you 😉

    Reply

  4. Thanks for visiting my blog earlier which lead me to yours and very glad it did. I love your resolve and how you are looking at things. It is the same realization that I have come too with FM/CFS/ME along with MS and idiopathic neuropathy as well. I look forward to you your posts. We just take life one day at a time HUGS

    Reply

  5. I am right there with you all. I have suffered from severe depression and random pain and exhaustion all my life. It made my life nearly unbearable, but nothing seemed to help. When I reached my 50’s I finally found a doctor that really paid attention. I suppose medical treatment has gotten much better also, of course, but instead of blowing off my depression, she listened. Apparently, I have a brain chemical imbalance that causes the symptoms. I never really had a chance in that department – my father was an alcoholic, which caused sperm DNA issues, and my mother was a psycho (literally) so I got it from both ends.

    I was finally getting on the right medication to smooth out the symptoms, getting my life in order, when I got stage-III breast cancer. Now that I have a double mastectomy without reconstructive surgery, my symptoms are given a lot more leeway by people I know/meet than they ever were when I was just a “nut-job” with made-up symptoms. Figures, doesn’t it? My symptoms are much better on my medication, but I still have really bad periods. People just put it down to being ‘boob-less’. . . Like i care about that – at least I can sleep on my stomach now! ROFL

    Reply

  6. Thank you so much for visiting my blog – I love new visitors! I really can sympathise with you. I suffer from idiopathic small fibre neuropathy which is basically that they don’t know why my nerves tell my brain that I am in constant pain! I cannot stand or walk because of it but I refuse to become a victim of it and keep myself very, very busy so I don’t think about it. Restoring our house, working and sewing/crafting and family keep me very well occupied but sometimes I definitely do NOT follow my own advice – don’t overdo it! Take care. Michele

    Reply

    • If you have the energy to be busy use it but take some of it to rest – yoga or perhaps meditation, I’ve found the latter helps. Amanda

      Reply

  7. Posted by zedster66 on May 14, 2013 at 2:46 pm

    I suffer from a debilitating neurological condition, Basilar Artery Migraine, or to others who hear the word ‘migraine’, ‘a bit of a bad headache’. When I stumbled across the spoon theory a couple of years ago, it felt like there were people out there who understand. Some people never will though. People think you’re a liar or a malingerer if you say going out to the Post Office for an hour wipes you out for days and causes pain in your face and an inability to walk or see properly. Even disabled sites/support etc ignore invisible illnesses.

    Reply

    • I understand the “if we can’t see it, it’s not there” syndrome that most people suffer from. I do have an understanding partner but often friends who know and are sympathetic forget. I think we add to that (I’m not victim blaming) because we so want to be normal and do things and not be seen as moaners.
      Use the spoon theory as a teaching tool and stay as well as possible.
      Amanda

      Reply

  8. My brother in law, when he was alive, suffered from ME. I must admit to being guilty of scepticism to begin with (if I’m honest, that is putting it mildly). It is a difficult illness to understand for those of us who do not suffer from it but I try to do my best and you have my sympathy. btw what is spoons theory?

    Reply

  9. Posted by ladyflowersbysusan on April 12, 2013 at 5:34 pm

    You rock!

    Reply

  10. I’ve also suffered from this debilitating illness twice in the past ten years but thankfully I’m OK at the moment.

    I think that one of the worst aspects is not having any visible symptoms like a broken arm of being covered in spots that show to other people that you really are not well and not making it up!

    At the time it seems like it’s never going to end but you will come out on the other side. I know two other people of a similar age to myself (56) who have also had the same experience and result.

    Reply

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