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RECOVERY REGISTRY

Discussion in 'Action Alerts and Advocacy' started by beaverfury, Sep 22, 2012.

  1. meandthecat

    meandthecat Senior Member

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    I really needed to connect with others in 'Recovery'; sometimes....Ha, when do I not....I feel lost in a limbo between well and ill. I'm not well but in no way am I as bad as I was 4yrs ago. I checked out the page requesting recovery stories and whilst laudable it lacked immediacy, which is imperative for me, as my attention is not what it was.

    I need resonance with others to support the gains; like walking up a shingle beach, progress is slow and much of it is backward. The local group I see are pretty stuck and I feel awkward being too upbeat. We all need hope but you can have too much of a good thing.

    Sharing info, protocols and treatments are vital, it has got me to this point; as being a Brit there is no medical help; but for me the physical debility is easier to cope with than the psychological fallout.

    The psychological aspects of recovery seem better mapped for almost any other disease, and accepted.' Tough coming back from Cancer...have some support; How to run a marathon after Heart bypass surgery..... it's all possible.

    Try to piece a life back together after 7yrs of ME?, well you all know the answer to that one. How do you re-integrate memories that you have lost for 5yrs( I suffered almost complete episodic and short term memory loss). If you loose your memory, who are you? and do you really want to know. ( sorry couldn't resist).

    So I guess I am looking for a space a little different to that which I needed when I was so ill and to share that with others. ed
     
    GracieJ likes this.
  2. GracieJ

    GracieJ Senior Member

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    Amen, amen, and amen! :) I call this a bizarre alternative universe, because that has been the only way I could deal emotionally with my life so derailed from where it was when it all started. I think a survey on memory loss would be great. Happens with other diseases, happens with stress, so I really wonder with ME/CFS. I can look at snapshots that I took of my children over the years and not be able to tell you a thing about them.
     
  3. meandthecat

    meandthecat Senior Member

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    Yeah GracieJ When it started to come back it was like looking through an album of other peoples photo's, my face was there but no meaning. Then it was like another person demanding space in my head so I got help to work through this and to integrate these 'memories' with who I am now.

    It started with a trickle and turned into a flood; I found that I didn't much like who I remembered. It's slowed down now and things are easier but......I still feel like a refugee in a strange land;

    or am I seeing clearly for the first time in my life.
     
  4. Mr. Cat

    Mr. Cat Senior Member

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    Yup, you got that right, beaverfury. My non-PEM ass would be up all night dancing and debauching, to be followed the next day by relaxing outdoors with a pina colada in a non-sun sensitive and non-alcohol intolerant way! My non-food sensitive self would be eating all sorts of lasagna and ice cream pies.
    On a serious note, I kind of like the person I've become due to all the CFS restrictions, and, aside from the dancing and socializing, would probably go back to my restricted way of living - it suits me, and keeps me healthy and ballanced.
     
    dsdmom likes this.
  5. beaverfury

    beaverfury beaverfury

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    Ah, ice cream!! .. Alcohol!! .. Debauchery!!! Ah, the sweet contemplation of indestructable health.
    Just a memory.

    I like some of the things ive learnt about my body, a little too late.

    If i got healthy i would still follow up getting gene tested, amino acid tested, etc etc, to stave off any other potential problems. I think the next generation will be in a good position to prevent health issues with personalised medicine.
    And maybe recovery from me/cfs will be a very likely outcome in future. Lets hope so.
     
  6. justy

    justy Senior Member

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    Hi all, thought i would chip in on this discussion. I would be interested in a thread for those who feel they are 'recovering' and can gain support and speak freely there. I now consider myself to be recovering, but it's a long and complex thing (sorry about the word thing - can;t think of the word i want!)

    This is the shorter (ish) story. I first became ill with M.E 17 years ago. I was properly ill for about 4-5 years - with a short period of being almost bedbound and unable to walk etc (months) i didnt do anyhting special, just gave up alcohol and tried to be very healthy. I never recieved a diagnosis and there was no internet. I read a book from the library and it looked just like what i had - a GP when asked said it could be M.E - but not much seemed to be known at the time. Then i was told i had depression (i didnt) and just gradually got better over time. Eventually i would have said i was 'cured of M.E'

    In fact i belived in this 'cure' so much that i couldnt understand why others i met with M.E werent getting better the way i had (at the time i did a lot of new age stuff that i thought had cured me) Over the next few years i regained my confidence and had a couple more children, but i was still never right in myself. I had a lot of infections and caught everything going - problems with my lungs and stamina. I could exercise, but i couldnt get beyond a certain level of fitness no matter what i did. I felt tired and exhausted all the time. I wanted to work part time but couldnt manage that and the kids. Every time life got stressful i would have these big physical melt downs. I thought it was my thyroid (it wasnt) i thought it was candida (it wasnt) after vigorous exercise i used to feel as though i was going to die - my GP said i was dperessed again (i wasnt) i carried on like this until 4 years ago.

    When i caught measles, at the same time as becoming busier and busier with my life. I was trying to work and parent - something i had never succesfully done before. I got pneumonia, then pleurisy, then a year later, still not better i had a minor op (HPV infection of the cervix, causing chnages that my bosy hadnt been able to clear in 8 years) and i crashed massively - much much worse than the first time i was ill. I ended up at about a 2-3 for about 3 years and am now gradually climbing out again.

    I havent tried much due to funds, just aggressive resting, pacing and supplements (b12 injections are the bees knees) and am functioning at a much higher level. I can do light housework for a couple of hours at a time. I can go out about 3 times a week (still no confidence to go out alone) i have days where i dont feel poisened and sick at all. Many symptoms have gone (pain mainly and eye issues) I still use a wheelchair for longer shopping trips etc. But compared to last year i am so much better and still gaining very slowly. The last two weeks i went with a friend to the pool - we stayed in for 15 minutes, floating and gently swimming then 15 minutes in a hot tub, and still managed lunch out after. BUT i then had to go to bed for a couple of hours so i could cook dinner for my family (last year i couldnt stand up long enough to cook)

    So not recovered, but i have had a long remmission before i i think i can do it again - even if not to ful full health. One day i would like a job again - but i know i could never work full time - i'm 43 and ive never been able to.
    I am very interested in those like me who seem to have a natural inclination towards getting better - and im also concerned that many think they are fully recovered only to relapse many years later, like i did, becuase i took too much on, and my immune system was low.

    So much more to say, but this post is long enough already.
    All the best, Justy x
     
    leela, taniaaust1 and heapsreal like this.
  7. Crux

    Crux Senior Member

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    This is great news, Justy !

    Even with the unsolved complications, you've made so much progress.

    I too have had the most help from B12. Folate has been good too. I think they are the substances that will better my chances of rising up from this bog. It's still taking more of my time and patience, and there have been set backs...But if I remind myself of how it was in past years, I can appreciate this progress. ( Though I do get frustrated, and want to push, I realize better now, it doesn't work).
     
    justy likes this.
  8. justy

    justy Senior Member

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    Hi Crux - yes i am still having problems with pushing and short crashes - its so hard not to rush headlong in!
    As always, the bad news comes staright after my boasts of how well i am doing. Woke up today feeling like id been hit by a truck - and the eye pain is back. BUT i feel confident that a couple of days real rest will get me over the hump.

    Glad you are finding progress too, and i think for all of us it tends to be slow - needing to be measured in months and even years rather than weeks and days. When i look back i see how far i have come... but still a way to go. Havent tried folate yet- struggling with severe anemia at the moment and trying to get that fixed - hoping it will improve fatigue and some other nasty symptoms.

    All the best to everyone,
    Justy x
     
    Crux likes this.
  9. beaverfury

    beaverfury beaverfury

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    "This is the shorter (ish) story. I first became ill with M.E 17 years ago. I was properly ill for about 4-5 years - with a short period of being almost bedbound and unable to walk etc (months) i didnt do anyhting special, just gave up alcohol and tried to be very healthy. I never recieved a diagnosis and there was no internet. I read a book from the library and it looked just like what i had - a GP when asked said it could be M.E - but not much seemed to be known at the time." - Justy

    I feel for the pioneers of this illness whose suffering, self education and advocacy has built a framework for current understanding and treatment. Must have been terrible decades back without internet information, and a general response of disbelief from doctors and public. Truly horrible.

    Its not so brilliant now. But my timing for getting this plague could have been worse. I'm 42 and have had it for 3years. Not nearly so bad as others have it.
    I'm jealous of the next generation whose treatment and recovery may be a mere formality. But who knows? Could be a long wait yet
     
    Tito, Crux and justy like this.
  10. Crux

    Crux Senior Member

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    Hi Y'all, Hi Justy;

    I don't know if it gives much relief, but when I search through forums where people have tested and been given definitive diagnoses of various diseases; even they find that they have many distinct differences from each other in their tests and symptoms.

    So, I see that there is a need for individualized treatment, and certainly better technology. Hopefully, we'll be able to benefit in the future.

    Since I finally realized that so many of my problems,( not all ), were B12 related, I've searched for info about it. I've learned an incredible amount here, and over at the Pernicious Anaemia Society,( PAS ), website. ( The folks there are also very helpful, as folks are here.) Even though many/most of them have a diagnosis, many still find that simply replacing B12 isn't enough to bring them to health.

    Justy, I've learned from the PAS, that folate is needed with B12 because it helps with availability of it. They also recommend a product with iron called ,"Spatone", to their members. It's a water from Wales that's supposed to be very effective for iron anemia. ( I don't have iron anemia, so I haven't tried it, but I do respect their opinions.) I understand that iron anemia can also cause great fatigue, so maybe this product will be favorable.
     
    justy likes this.
  11. justy

    justy Senior Member

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    Sorry crux - just lost a long post that i wrote to you - too knackered to re write now - might do so later or tommorow.
    Cheers, Justy
     
  12. Hip

    Hip Senior Member

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    Little Bluestem likes this.
  13. Hip

    Hip Senior Member

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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Hip,
    i bought that book a few years ago, it was mostly about people recovering with the lightening process etc and other psych treatments, i dont really think these people were cfs/me people maybe fatigue and depression type illnesses.
    I dont recommend it:(
     
    taniaaust1 likes this.
  15. Hip

    Hip Senior Member

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    I think you are right, heaps.
     
  16. Hip

    Hip Senior Member

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    The entire 50 recovery stories book seems to be available to read here:

    http://www.alexbarton.co.uk/recoverystories.pdf

    If you look, Mickel therapy seems to be cited a number of times in this book, as the therapy that cured several individuals in this book.

    It makes me wonder whether these people in the book that were apparently cured of ME/CFS may have had something like chronic Epstein-Barr infection, which resembles ME/CFS, but generally clears up on its own after 6 months or so. They may have attributed their ME/CFS remission to whatever therapy they were undertaking, when in fact they were just healing naturally from a chronic infection.
     
  17. beaverfury

    beaverfury beaverfury

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    There are some great yarns in there, with a varying range of attributions, from complete bed rest to the healing power of Jesus Christ. The beaver has turned to it many times.

    There are several mickel therapy or lightning therapy stories, but that leaves forty other recovery stories, attributing diet changes, anti candida, orthomolecular medicine, ear nose throat surgery, etc etc.
    Who am i to sneer at Max Rivers spontaneous healing account, with hallucinations of a Nazi concentration camp on a Jamaican island?!! http://www.cfs-healing.info/max-rivers-spontaneous-healing-me-cfids-cfs.htm

    Attribution is a tricky mother. I still havent figured out exactly why i got sick, and who knows why some recover?

    I've just had a very good week. Been able to exersize with negligible PEM and no viral feeling. If i carried on like this i could attribute it to the Inosine, clarytine and carnitine fumarate i just started taking. But honestly, i dont have a clue.
    Flip a coin.
     
  18. Dainty

    Dainty Senior Member

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    I am in the process of recovery and currently do not see anything standing in the way of complete health so long as I remain on this treatment path. I would not list myself as "recovered" until I am fully so, however, which for me would be returning even to athletic activities, school/work, and all normal social interactions without any symptoms whatsover.

    I had a remission, once. After about 3 years of being ill but barely managing to mostly live a "normal" life with a push-crash cycle and miserable symptoms, I had a summer where it seems all my issues disappeared. How lovely to live healthy again! Then I crashed into being bedridden and fighting for my life. And the years went by.

    I matched ICC and CCC criteria (my caregiver quipped "she fits the criteria aobut 5 times over"), allergies/sensitivities were through the roof so that I ran out of foods that I could eat and several times was in danger of starving, finally stabilized to eating 5 foods for years, severe fibro, and MCS constantly life-threatening, had to live in a porcelain environment.

    The difference between remission and recovery is an important disctinction, I think. The treatment I'm on is addressing the root of my problems, and the improvement is coming on gradually, in direct correlation with the changes. For my body, the core cause of the health issues pre-dates both my severe and initial onset of ME/CFS, FIbro, and MCS, so that in some areas I'm now beginning to feel better than I've ever experienced in my life, even prior to getting sick. Which has been mind blowing, to say the least.

    It's tricky for me to raise awareness of this treatment at this stage, for a variety of reasons. One is that there are a lot of, for lack of a better term, "knock-offs" to it and people assume they've already tried it. Another is that improper lifestyle management can completely undo the treatment, so it's not as easy as taking a few pills. It requires a lot of awareness of your body, superceding the instinct to tune out the areas that are screaming at you so that you can figure out what's needed for it. So that's a lot of self discipline. It requires finding ways to manually bring down your nervous system. It's not always comfortable. But it is healing, which results in tangible relief.

    I'd like to share more, but at this stage I only have the energy to help people that are genuinely interested in investigating it as a potential treatment for themselves. I've come to realize that advocating it and trying to convince people to be interested in it is not very effective, but I have information if people want it. Since I've already shared a lot more detailed info in other posts (both forum and blogs) I won't repeat it all here. If after reading that stuff you're still interested then feel free to send me a PM. :)
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thats great dainty.
    I understand what u mean with other people, many just dont believe that u were ill and then say oh then you never had cfs/me if u recovered. Unfortunately im starting to understand why people who get better dont return to these sites because they arent believed by others which is a shame. I hope u continue to improve.

    cheers!!
     
    dannybex, anne_likes_red and Dainty like this.
  20. beaverfury

    beaverfury beaverfury

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    My very good week came to an end. For the four billionth time i got carried away with my progress and started hammering the punching bag like the old days. Spent the next day in bed, in pain :( Whooped by a punching bag.

    A lot of my symptoms are much better than they were a year ago, but i just cannot fully shake this thing.
    What the HELL is it ????????????????????????????????????????????????????????????????????????????????????

    Recovery for me would mean being robust enough to deal with a relationship and socializing. Not quite there ...Yet.
     
    Sherlock likes this.

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