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.
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when is recovery actually recovery

Discussion in 'General ME/CFS Discussion' started by free at last, Mar 20, 2015.

  1. free at last

    free at last Senior Member

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    something I have been thinking a lot about, when is recovery really recovery.
    When my illness first started it was like hell on earth. Like some kind of viral attack immune dysfunction. sleep disturbance, allergy effect nightmare that went on for months at a time with barely days between relapses.

    PEM is something I thought about because I read it made it worse, I tried to cut it down. But even doing nothing did not stop the relapses. As the years rolled by, and I got better. I still seemed to get symptoms if I exerted myself greatly. Though sometimes I would seem to get little reaction, and others a big one ?

    went on like this for many years.

    Now PEM doesn't appear to be a primary symptom. I can exert myself and not crash like I did for all those years. And when I think I am finally reaching a stage in my life where this illness is beaten. out of the blue. I will get a crash that lasts about 24 hours
    I had one recently. All the usual, wondering if I have food poisoning, or if I have caught a virus, or flu.

    That toxic poisoned feeling one gets when they are ill with a virus, or bacteria. But again it dawned on me after about 12 hours of symptoms, it was the old me, the old ME I should say. I actually was dreaming sitting on a couch, and vomiting. It woke me up and I felt sick. Yet after a while I realised there is no way this food poisoning.

    Not sever enough to be uncontrollably vomiting. But feeling sick none the less. and that feeling in the brain
    that the sickness is in the brain. slurred speech, staring in to blankness. I can always feel it in my brain ? Photo sensitive. like the brain is being poisoned by something ?

    I keep having periods now where I sleep all the time, cant stay awake for very long, before I have to sleep again. sometimes it has gone on for days. as it has recently. then after the crash. I felt better much more awake for a few days at a time. I still get pains in my head, and in my eyes,, my eyes ach every morning I awake my eyes are hurting.

    Every morning, I have one side of my nose completely blocked, like I have a cold. When I get up it clears. Next morning completely blocked again ? on and on.

    I have to have my gall bladder out soon, as they say it has to come out. Last time I had a bad attack my liver swelled and I was jaundiced. But these conditions are likely not related. Though I have had gut problems all through this illness which first started twenty years ago.

    Though lately its been a little better since I cut back on fats. And started on the high veg diets I did in the past, that helped me partly recover.

    So I do consider myself mostly recovered, PEM is for the most part not a primary symptom anymore. Though even that is unpredictable. As I appear to Occasionly still get the toxic symptoms, even if I am doing little,, and even if I have been well for months.. This illness is nuts. am I recovered or not ?

    when I think I am free of this illness,, I get twenty four hours were it says aha I am still here. hiding waiting ?
    yes the crashes seem to happen less and less these days, sometimes for ages. And yes I only seem to feel terrible for about twelve to 18 hours. feeling a llot better by the next evening for example.

    But considering the sleep problems still have, sleeping for ages yet still feeling tired. the head and eye pains
    poor memory. photo sensitivity. And infrequent crashes, am I recovered. is this still ME SEID chronic fatique syndrome. or what. whats going on ? is all this echos of a past partly recovered illness.

    I just don't understand. Am I a success story. I feel I am. Though I am traumatized by the past. And I am scared to go out in the winter as I cant handle the thought of catching flu. I am sick of being ill. And will avoid it in the winter time. Even by losing my freedom. I haven't gone in a supermarket for months my partner goes in for me ?

    Anyway sorry for such a long post. Not sure I should bother others on here with the questions, as I know what some must be going through. But just thought those that can have the strength might understand all this more than I do ?
     
    Last edited: Mar 20, 2015
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  2. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Hi @free at last,

    I'm not sure anybody has a definitive answer to your question, but I would guess that once anybody has experienced CFS for a period of time, it means they were susceptible to it to begin with, and will likely remain at least somewhat susceptible to it for the rest of their lives. If there's one thing I've learned about having this illness, it's to take things one step at a time, and to appreciate any transitory moment of feeling better, such as laughing or an experience with nature.

    As a cautionary note, I've seen several testimonials of pwCFS relapsing after having a surgery. I have a Lyme diagnosis, and once I learned pwLyme can be susceptible to gall bladder disease and congestion, I researched extensively on how to keep my gall bladder healthy. From this research, I concluded that gall bladder surgery is probably one of the most easily preventable surgeries there is. Inexpensive supplements like malic acid, taurine, glycine, and others, along with natural liver/gb cleanses often work wonders.

    A woman with CFS over at the ProHealth board has posted several times on her excellent results treating liver and gall bladder issues with a Standard Process product called AF Beta Food. Here's a LINK to one of her many posts. Just posting this information in case you would want to consider getting a second opinion about your gall bladder surgery, perhaps from a naturopathic doctor who doesn't have a financial incentive to perform an expensive surgery.

    BTW, congratulations on your recovery! Whether it's temporary or permanent, who can really know. Either way, it seems like you've been given a whole new lease on life. And sometimes the best thing to do is enjoy it to its fullest, while doing whatever you can to sustain it.

    Best, Wayne
     
    Last edited: Mar 20, 2015
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  3. free at last

    free at last Senior Member

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    Hi Wayne cheers for the links I will have a look, I dont want surgery to be honest. But it has been really bad in the past, it was getting a joke I was in hospital with it three times, And seems quite sever, I don't think its something I am going to cure without surgery though I could be wrong..

    Your comments kind of helped me clarify where I am perhaps. It is a big unknown all of this, agreed.

    Hard to have all the answers I guess, though we still want them, ive always wanted answers.. But never really got them even now.. As we all do.
    That's life I guess. But the answers might come one day. Lipkins study is encouraging..

    And fits patterns in my life and others for sure. So maybe one day this post will seem like the one we remember where, the answers were right in front of us all the time. But science just hadn't caught up enough yet to fully explain its complexities.
    And I do try to have that life that was taken away from me all those years ago. But still always seem to have somekind of ailment ? Still I know many would prefer to be where I am right now, and of course I respect, and am mindful of that.

    Your comments about it being lifelong do seem to be true, though, I do notice as each year goes by I go from strength to strength in the ME CFS department. Like it weakens or something. over a very long time period. though clearly it doesn't for all.. Though even those it does weaken with seem to have a echo of it remaining in there bodies.
    Like a unwelcome, but known friend. Lipkin talks about stages. I say spot on. Exactly that's right.
    Though those stages do appear to have a large variance between patients. Cytokines I am convinced are a big clue. I wonder when I still get my infrequent crashes if my cytokines spike. Or some other chemical. hidden dormant virus or bacteria pathogen ?
    Interestingly Wayne. For years when I had the crashes I would always have stomach involvement. Almost always with bad breath, that would stem from the stomach. which would go, as soon as the toxic feelings had passed. I saw this pattern time and a again, it was not a coincidence.
     
    Last edited: Mar 20, 2015
  4. *GG*

    *GG* Senior Member

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    Yeah, I think you really want to look into NOT getting your gall bladder removed. I hear it is common for something to be found wrong with it with our illness, and Fibro. But I hear that is a big mistake, hope your research finds a better solution!

    GG
     
  5. Wayne

    Wayne Senior Member

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    I guess one more comment on the gall bladder business. My guess is that 90% plus of those surgeries could be avoided, but I realize there are times when they can't. I think some severely infected gb's are simply unsalvagable, and leaving them in is worse than removing them. In cases like these, thank goodness we have surgery as an option.

    On the other end of the spectrum, which I think is all too often the case, is when patients are unnecessarily rushed into surgery. My wife's co-workers daughter who is only 16 years old is currently being pressured to have this surgery. At 16 years old??? I read a testimonial on curezone a short while ago by a twenty-something guy who was pressured as well. It didn't feel right to him, did a little research, he did a simple cleanse, and hasn't had a problem since.
     
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  6. amaru7

    amaru7 Senior Member

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    To me personally recovery would be if I can work full time to earn a decent living and get my social life back, but that seems too far away for my constant severe brain fog and mental/physical exhaustion.( couldn't read all your long posting )

    That to me the way to have a meaningful life is to work and be socially active member and not being able to do so makes me depressed plus the society views one as useless without work.

    But to everyone this is different, some would be happy with less symptoms and just being able to have a hobby again.

    I on the other hand am a career and social guy (my attitude to what's important) and not being able to pursue these things while living on benefits for a long time due to disability is the main pain to me I try to find a solution for.

    For years I've been spending allot of time energy and money to try many different treatments/approaches, and they failed me. I guess I expect too much in terms of improvements and should settle for less.

    Or I try to do easy work. I don't know I'm 30 now and find it hard to accept that I'm disabled for life.
     
    Last edited: Mar 20, 2015
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  7. taniaaust1

    taniaaust1 Senior Member

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    I personally wouldn't think of you being recovered seeing you still get crashes at times. If you haven't had a crash in a while and aren't getting symptoms due to the ME, you could though say you are in remission. Recovered is usually a term used for when someone is completely cured of something and you just aren't cured yet.

    The SEID is tricky as by that you could be deemed recovered if you no longer meet that criteria but did before. Yours is another example of how the SEID definition can miss people who obviously still do have ME/CFS.

    I had trouble with that for years. I put down to dust mite allergy as after all that is all through our mattresses and often pillows.

    I really wish they'd study that feeling as its quite distinct and I personally think we must be getting an influx of something bad happening in our bodies (viral reactional? a chemical being released by our bodies?) during flares like that.
     
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  8. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

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    Zogor-Ndreaj, Shkodër, Albania
    Yes it's interesting isn't it.

    The gut feeling is always the hallmark of a good/bad day for me. You know just by the distinct feeling in the stomach that you describe.

    The study I'd most like replicated is Pridgens finding of active HSV-1 in gut biopsies.
    That could reveal a lot I believe.
     
    Last edited: Mar 21, 2015
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  9. free at last

    free at last Senior Member

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    Thanks for the replies and thoughts everyone pretty much agree with everything that's been said.
    Just seems a case of enjoying life as best we can at all our different levels, And hoping further breakthroughs happen, as the problem with remissions are they can relapse into worsening illness once more.
    Not something I even want to think about, It was bad enough the first time. Though it doesn't feel like that will happen, the illness always seems to surprise, me, and even after long gaps, always seems to come back even if its only briefly.
    Your comments have helped me rationalize whats happening a bit more perhaps.
    Maybe I should say in remission. I often say partly recovered which is a contradiction. Remission does seem more accurate. Thank you all for your advice. I am listening to everything that you all have spoken about
     
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  10. taniaaust1

    taniaaust1 Senior Member

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    My own poisoned feel doesn't seem to stem from the gut but its an all over feeling poisoned thing.. but at times when this is going on I have I feel like I have something bad/toxic running down my throat (maybe from my sinuses?)
     
  11. susieq777

    susieq777

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    Ah, the am I recovered question. I've had several periods where I thought I was, simply because in comparison with how I felt I was so much better. It was like this urge to get away from that hellish existence and be back from the underworld, in the land of the living.

    I guess you could say it's the danger spot for those who are able to retain a really good degree of wellness. I'm just hoping that if I'm ever able to get back to that degree again, that I don't get too carried away and think I can behave like one of them there well people.

    Maybe it's like being a recovered alcoholic. Maybe there should be CFSA meetings and sponsors :)
     

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