The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

ME / CFS the mental effect

Discussion in 'Lifestyle Management' started by free at last, Apr 1, 2010.

  1. free at last

    free at last Senior Member

    Hi everyone ive been wanting to talk to people for a long time about something that almost feels like a secret, although my family know, outside of that i dont tell a lot of people, and often feel embarresed to do so. But it feels different here, and i know most if not all will understand, even if they dont experiance the same thing, and not being face to face also helps me speak about this.

    After battling numerouse fevers and symptoms in the early days of my ME diagnosis, and a couple of bad experiances with chicken pox ( when i was still in the early Chronic stages ) and a little later with influenza, My mind became so protective, of not catching anything that causes fever, ( mostly influenza but there are others ) I started to lock myself away in the flu months, mostly between nov and late april to avoid catching flu.

    If members of my family during what my mind sees as the dangerouse months, cough or worse sneeze, i run a mile, and stay away untill i think its cleared, when in public i was putting heavy scarfs tripled up around my face in the belief it would stop me catching the flu or any illness that can produce fevers ( only in later years did i dicover it probably wouldnt have stopped it anyway ) constantly watching people when i had to go out, but refusing on the most part to go in supermakets on buses trains ect, The swine flu scare last summer after locking myself away the previouse winter, and doing the same this winter means i have been doing this for about a year and a half now, with hardly a break ( how nuts am i, yes i know ) Only recently have i got on buses and gone in supermakets with my family rather than do what i always do wait outside.

    I feel stupid, i feel inadequate as a man, i feel crazy, i guess in a way its now sort of a mental illness, but come most summers ( except the last swine flu summer ) i do come alive and join the human race again as a normal person, so its only really a mental illness of sorts, its actually my mind trying to protect my body from any more viral illnesses. After one has had so many fevers in the past, with the onset of the ME illness and diagnosis, you would have thought my mind could cope more with a viral attack. Nope, opposite is true, because i was so scared back then, and wasnt really coping at all well in the early chronic days, its like my mind has been shattered by this and i cant seem to shake this fear, i think its actually verging on post traumatic stress disorder phobia. I just can not shake this fear in the winter, thats it, i cant go back to those days of what i experianced not even for a week, so i dont get better with this phobia, and i cant stop doing it. I am mentally affected so badly from the memorys of what happened in the past, that if i think about it i feel like crying again. But im ok if i dont think you know.
    Has anyone else developed anything like this ? what should i do about it, do i qualify for disabillity payments on purely mental grounds ( i am now fairly able bodied ) i havent worked for so very long. my family struggles to survive on the money we get, i just feel useless and inadequate. I hate what this illness has done, but im one of the lucky ones to have got most of my health back,

    why can i not become normal again, you bet in the summer i will live my life to the full, as i know you all would if you had recoverd like i have, unless swine flu comes back this summer, then ill probably go back to a house prisoner again.

    I feel guilty joining this forum knowing how ill most of you still are, and how much better i am, and think i should get a grip, And dont deserve to be here.

    Even though this has been the only time in 15 years that ive felt like ive belonged, and been understood by others who are going through what i did.
    Sorry for always being self indulgent. it feels thats all i am, i cant seem to help it, this illness just messes people up, sometimes think maybe i should have just died, even though im glad to be alive, and see my 2 daughters grow up, Back then i wasnt sure i would

    And simon wessley, peter white would say im just a little run down and deppressed, deppressed when i think back maybe, a little run down ( hardly ever now, though exercise has produced symptoms on occassion still ) More like the vietnam war in my head. Maybe i am just plain crazy. and dont deserve to have partly or mostly recovered. But all those fevers keep reminding me i was not mad. i was ill I will be tested for xmrv soon, and dont want the virus, but do too. I mentioned this early on in a thread here, Notice others all saying the same too, this illness is fxxxed up
  2. jace

    jace Off the fence

    free, I'm really glad to hear you are not suffering ME symptoms now. I can fully understand your fear of doing anything that might mean a return to the nightmare.

    I don't think being 'full blown' XAND (to borrow from HIV terminology) is a requirement to frequent these boards, and I for one have been glad to be able to read posts from you. You belong here, IMHO.

    It may turn out that you are (still) XMRV positive. And maybe, we all hope, there will be a treatment for that that will allow you to relax your isolation in the winter months. Who's to say whether you are right or wrong? YOU ARE!!

    This illness is fxxxed up, for sure. Don't beat yourself up, just follow the road, and have faith.

    Jace x
  3. free at last

    free at last Senior Member

    Thanks for the supportive words Jace, I need to get my head back on track and forget the past, sometimes its hard because it makes us what we are now, even if we dont like that person very much, Im going to get a grip, its about time i did
    Thank you so much, sometimes the words of a stranger help a lot, it shows goodness in the world where sometimes we just see nightmares and chaos
  4. BEG

    BEG Senior Member

    Southeast US
    Hi Free At Last,

    It sounds to me like you have Post Traumatic Stress Syndrome. What you went through was so physically horrible, that you'll do anything to avoid it again. Sounds logical not mental to me, although your methods might be interpreted as a bit extreme. Perhaps there is a close friend , minister or someone you might talk to. Yes, we certainly do know what it means to suffer invisibly. You won't find anyone judging you in this forum. Hope you feel better soon.

    BE G
  5. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    free at last,

    I'm glad you're doing better with your ME/CFS symptoms but sorry that you're still struggling with health related issues.

    My first piece of advice to you would be to ignore Wessely and White. They will get in your mind and just confuse everything. That's not to say that good psychological help might not be an important piece for you as it is for many of us; just don't let their confusion keep you doubting your own sense of self.

    I'd also consider that winters may be harder on you for other reasons. I don't do well at all when the air starts getting moisture in it, and it begins to get colder and darker. It starts for me in mid-September, gets worse by the end of October, and for the rest of the season, the stress on my body affects my mood and my ability to tolerate a wide variety of stimuli. We've had a few very nice spring-like days here, and this added sluggishness, over-sensitivity, fatigue, achiness, etc. that often feels like a psychological problem begins to lift on its own. I begin to think about leaving my house and going places again. That happens without any effort on my part or any change of my thought patterns.

    I have never completely figured out why winters are so hard. Some contributing factors molds, low barometric pressure, intolerance of cold, and also seasonal affective disorder (which I had quite severely for several winters) may all play a part.

    Today the clouds are back. Today I am struggling again to keep my head above water. Everything is just worse for me when the barometric pressure drops. Once I made that connection weather changes affecting my health and my coping status I've been able to ride out the storm. It doesn't mean that all of a sudden I have psychological problems, it means that the weather changed, or the season changed, and I feel like crap. When the clouds go away, I will feel better.

    Your well founded fear of catching a virus may hold more power over you in the winter because your body is struggling in some way to deal with other as-yet-unknown factors.

    I hope this helps a little. If not, please ignore. And please don't hesitate to post again. We are all struggling in various ways. This illness is hard; we need each other.
  6. free at last

    free at last Senior Member

    Thanks for the kind words, was scared going to the ashford blood draws, on packed trains people coughing and sneezing, my worst fears and all. But i did it. and havent caught anything. been a while since ive been on a packed train i can tell you.

    slow moves.

    when the flu goes away, i do relax, but i hate the flu, makes me feel like i did in the past.
    yep its a bad phoba now. But trying to still stand up to it, a flu free summer im hoping for,really want to live normally just for a while, fingers crossed. thanks for the advice kind ladies x

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