There is hope

Discussion in 'Fibromyalgia Main Forum' started by surfnut, Mar 14, 2007.

  1. surfnut

    surfnut New Member

    I just wanted to post this to give those of you who`re really suffering at the moment a little hope. I`ve had M.E. for 7 years and was pretty much housebound, and most of the time bedbound. I was in so much pain, and so depressed, I was actively considering suicide. Cut to now, I do voluntary work in a home for the mentally & physically handicapped and I`ve just completed my NVQ3 in Health & Social Care, and been asked to train as an NVQ Assessor. I`ll be starting paid work one day a week for a Care agency next month, and, if I pass ok and continue my improvement, should lead to full-time paid employmeny next year.
    2 years ago, none of this seemed possible, or even remotely likely, I`d shown no improvement in 5 years and I couldn`t see a future. I guess what I`m saying id don`t give up, things can change when you least expect it, and there id a light at the end of the tunnel.
    I`ve got no `wonder drug` or `method` to promote. I have been(and still am)taking some unconventional things to try to aid my recovery. If anyone`s interested, I`ll quite happily post what I`ve done or tried. I`ve realized I`ve left it a little late tonight to get into this, but if anyone wants to know I`ll check back on here tomorrow pm. Brian
  2. Katchina

    Katchina New Member

    Congratulations-good for you surfnut-enjoy!

    Please dont lose sight of all of your good habits while you are in this blissful remission, though.

    I dont mean to rain on your parade but these illnesses tend to be ones of remission and relapse, so an improvement or otherwise is occasionally put down to a new 'treatment' when its often just the ebb and flow of the disease.

    For example, I had a long and blissful remission period too, when I also beleived I was completely cured because of the Reiki and other complimentary therapies, and so after a while I didnt take care of myself like I ought to have done, and as a result my wonderful remission was all over in 3 years. It has been five years since that relapse so I am hoping I must be due for another remission soon, I have been good so I think I deserve it lol!

    Please dont mind me being cautious-you have a good time- you've earned it.
  3. clerty

    clerty New Member

    I would love to know what you did I am not able to take mediacation and a lot of herbs make me ill list of things I have tried.
    Chiropractor (he just wanted my money)
    Acupunture (helps at the time)
    chinese herbs (made me sick)
    deep tissue massage (had a bad flare up)
    mmediacation mkes me ill.
    I am at my wits end xx

  4. Ginner

    Ginner New Member

    reading and learning...
    FMS for 10 yrs. just totally crashed past 2 yrs now, home bound. I had been working for 8 yrs.after dx. thought I had it figured out. Slam dunk , here I am, I want to get up again, I am frustrated.
    I sure hope this lasts a lifetime for you surfnut, take it easy ! Thank you for the info...I am waiting to hear.
  5. gottalaugh

    gottalaugh New Member

    Awesome to take that good and go with it as far as you can. Best wishes.
  6. surfnut

    surfnut New Member

    Hi guys. I spent about an hour this afternoon writing a long piece and posted it and there`s no sign of it! I`ll try and find out what`s happened to it.

    LISALOO New Member

    I need hope, so I love when people spend time sharing, I know you want to get on with your life. Defiantely tell us what helped!
  8. surfnut

    surfnut New Member

    Will do tomm orow Lisaloo. I`m gutted. It took over an hour to type in :(
  9. grace54

    grace54 New Member

    Surf nut I hope you stay feeling better, hope is a good thing.

    Jamin, I have heard good things about NAET, many have been relieved immediately of symptoms. I think I have a practitioner nesr me and I need to check him out. Good luck
  10. aquabugs

    aquabugs New Member

    I am very happy for you and hope that you continue to improve

    All the best to you

  11. jole

    jole Member

    This is the kind of positive we all need to hear!! Best of luck to you. I hope your job goes well and you continue to improve! It has to be such a great feeling to be able to feel like part of the world again. Go for it with gusto, and take good care of yourself.
  12. surfnut

    surfnut New Member

    Firstly, I`m touched by all the good wishes from everyone. It`s you who`re worse than me who deserve that.
    I unfortunately lost an hours work here yesterday, so here goes....
    I realized after 4 years that I wasn`t getting any better. I`d done what the experts said. I`d rested. In fact I`d rested so much that when the need came to do anything( I`m currently living with my 79 year old mother ostensibly to care for her, but who does the more caring is a mute point) I had no energy, or (as importantly) stamina to carry it out.

    I decided that I knew my body better than anyone else and from now on I`d do what made me feel good. I decided that every day I`d do a little something; sit in the sun for 20 minutes, walk once round the house, take pictures of the flowers. I know you hear all these horror stories about exercise and I`ve had most of them, but I deceided that even if afterwards, I felt terrible, well I`d have felt terrible anyway and at least I had something to show for it! It boosted my morale, made me feel better about myself, lifted my mood, and brought some variety to my day.

    I spent a lot of time planning what I was going to do, because it was positive, and took my mind off my problems. I`d also discovered that `Distraction` was a good way of dealing with pain. If I had friends over, I`d still be in the same amount of pain, but I would take less painkillers, because I wasn`t sitting there, counting the minutes till the next fix. I play the guitar, so that was one distraction, another was the computer. I could lose hours on there, so that`s what I did.

    I pretty much have my Drugs worked out now after all these years. You may not agree with all of these, but I`m just listing what I regularly take, and what has helped me. Some of these help more than one but you get the idea.
    I split in into the big five.

    1/SLEEP-Zopiclone, Valerian, Melatonin

    2/PAIN-Co-codamol, Q 10, Noratryptiline

    3/ENERGY-Ginseng, Ginkho Boloba, Creatine

    4/COLD/FLU Resistance-Vit C, a good Multi Vit, Magnesium, Cod liver oil, Vit B complex, Zinc, Garlic,

    5/CANDIDA-Probably the most important one of the lot. Threelac, Milk Thistle, Splilanthes, Acidophilus

    Threelac`s not cheap, but what`s the alternative? Within 6 weeks I felt a difference. My specialist doesn`t belive in the Candida idea, but he hasn`t got ME. I was already eating a very healthy diet, but I decided to cut out Coffee completely, limit Tea, NO fizzy drinks whatsoever. For Threelac to work, you need to limit your sugar intake as much as possible. I cut out all processed foods, I use my eyes to shop. If something looks artificially coloured, I won`t buy it, likewise flavouring, sweeteners, preservatives etc. I avoid any chemical products that make me feel bad, and where possible try to find natural alternatives.

    Anyway, that`s it for today. I`ll post again tomoorow, and happily answer any questions I can.
    I`m not over ME. Far from it. I know there`ll be relapses ahead, and I`ll probably have to pace myself for the rest of my life. But I`m getting my life back, and you can too.
  13. cherylsue

    cherylsue Member

    Very inspiring. Thanks so much for sharing. Wishing you well.

  14. Goldenlight

    Goldenlight New Member

    It is so refreshing hearing good news. I hope this will be a permanent state of being for you. I agree with a previous post -- don't forget all your good habits you have formed in getting here. Don't you think shifting energy from what isn't working and current symptoms to being grateful for all the little things in life or even using distraction like you talked about helps bring about healing? Maybe it is a process of letting go and being carried by the stream of life rather than fighting to swim against the stream that helps.

    I have had CFS/FM for 13 years with periods of feeling really well and then back to crashing back again. I really haven't mastered the pacing thing yet. I am realizing because I've been in a crash mode lately how much time I've been spending on what to do next to get better and how am I going to survive financially, etc., <basically WORRY> that I've once again lost the peace with "what is" and the gratefulness for every small thing. Your post again brings me to the point of remembering I need to refocus my energy. I have always taken a holistic route to healing: naturopathic doctor, chiropractor, Reiki, massage, nutrition, supplements, etc. trying to give my body what it needs to heal itself.

    So -- again -- yeah for you!! Keep up the good work and truly appreciate every day of feeling well. We all hope to join you in this state of optimal health one day.

  15. surfnut

    surfnut New Member

    I totally agree with what you said. WIth ME we have so little, that it becomes even more important to identify and focus on the little things that can lift us or distract us from our current lot. We get Squirrels in our garden. I can lose hours watching them, lost in the moment.

    I think it`s important to state at this stage that I think there are 2 stages in ME

    Acute and Recovery
    Doing a lot of this while you`re in the acute phase runs the risk of making you worse. Only you can judge where you are. A lot of people are `lucky` (If that`s the right word) to have ME, but not go into the Acute phase. If they`re careful, are able to back right off in most areas of their life, some people recover without ever going into the acute phase.I think early dianosis is vital in this. It took me 3 doctors, and my own delf diagnosis off this site, before I demanded to be tested for ME.

    I was Self employed, and working 7 days a week trying to work my way thru this. Giving into it, and realizing that was the only way of beating it was a very difficult lesson for me.

    I used to try to do quick crosswords, and if I couldn`t get the answer right away, and had to really think about it, I`d bring on a wave. I stuck with it tho, and now I`ll typically do a couple Crosswords and a couple Sudoko a day

    Since having ME I`ve tried

    Healing,- OK but no prize
    Meditation- I was pants at it. I have the atention span of a butterfly
    Keniesiology- Interesting. They immediatly picked up the Candida
    Acupuncture- Didn`t work for me.

    One of the most important parts in my recovery has been my mothers support. Moving back in with her has meant I don`t have the financial worries I would otherwise have had. She cooks all the meals and we eat a very healthy diet which I am sure has helped. Also, having a loved one to confide in has been invaluable. She`s been amazingWe can be so wrapped up in our own problems that we forget how bad our illness is for others round us.

    Another thing I`ve become aware of is how important it is to have regular use of your bowels(sorry, there`s no nice way to put this) I didn`t used to be, but if you consider all the toxins that are being killed off in your gut, it`s vital to get that out as regularly as possible. There. Moving swiftly on. :)

    I gradually built up my exercise from a stroll round the house to a little walk, always listening to your body and only doing what you felt able to. I would drive into the country before taking my walk for a bit of variety. The walk had now become a jog. It might only be 100 paces one way and 100 paces back, but it`s progress.
    To pace myself, If I had something coming up, I would do nothing for 36 hours beforehand, and allow a day`s recovery afterwards. Generally it worked as `do something day, rest day,something day, rest day,` etc.
    I`ve found as I`ve got that bit better that I can do things on consecutive days, as long as I allow as many rest days afterwards, as I`ve had days of doing things.

    I decided to do voluntary work because I could turn up only when I felt well enough, and didn`t feel under pressure to `perform` because I wasn`t being paid.
    I play guitar in a Day Centre for the physically and mentally handicapped, and it has been very draining, but rewarding beyond my wildest dreams. When you see some of them in there, their lifes ruined of without hope and the way they react to it, it helped me to re-evaluate my situation. I unlike them, could get better.

    I had a funny feeling that only good could come from doing something for altruistic reasons, and I`ve met some lovely people, it`s boosted my confidence, got me out of the house once a week, and ultimately when I decided I`d like to work in this field, changed my future. I eventually felt able to work twice a week, but decided to try to get a qualification in this field, so have attended college once a fortnight to attain my qualification. Achieving this has really lifted me and given me hope, and for the first time, provided a genuine light at the end of the tunnel. I think that`s so important for all of us

    I`ve been wanting to post this for a long time, but I wanted to be sure it was a real recovery before I did. I had 3 relapses last year, two caused by a slipped disk problem that recurred and was agony, and the other a Hernia Operation . Each time I was able to pull it back quicker and it`s this that is giving me more confidence for the future.
    It`s not the Nickel Process, or the Lightning one, it`s one that`s free and anyone can try
  16. Goldenlight

    Goldenlight New Member

    Thanks, Surfnut. Your story is inspiring. Good luck to you.

  17. surfnut

    surfnut New Member

    Just a couple of quickies. I have found basic Yoga very helpful. Just doing stretching exercises in the morning helps keep your body in some kind of shape, and they reckon it is the only type of exercise you can do where you actually end up with more energy than when you started!
  18. Mikie

    Mikie Moderator

    We do need positive stories of healing here because so many, including docs, don't believe there is much which can be done for us. There is a lot but no one thing works for everyone so we just have to be patient and, through trial and error, find what works best for us.

    I've achieved a lot of healing but it's been slow as molasses over the last six plus years. I am also getting ready to seek part time work if I can find something where I don't have to stand.

    Best of luck to you and, please, let us know how you are doing.

    Love, Mikie
  19. surfnut

    surfnut New Member

    Bless you all, and I hope you find the next 6 months brings you all better health :) Brian

    PS. Just remembered, I`ve written a song about my recovery called `Better days ahead`. You can hear it on
    Doesn`t mention ME. per se, but it`s about my recovery and I`ll be writing more about it in the future
  20. Shalala

    Shalala New Member

    proud of you

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