Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Two Steps Forward, A Hundred Steps Back

Discussion in 'Lifestyle Management' started by Carrigon, Oct 13, 2011.

  1. Carrigon

    Carrigon Senior Member

    PA, USA
    I am so tired of going through periods of time where I feel like I'm suddenly getting better. And I'll think there's a light at the end of the CFIDS/ME tunnel, and then shortly thereafter, I relapse for no reason at all. Not from overdoing it. I just plain flare up and feel like I want to die from the pain and all the other symptoms.

    I've been flaring up alot lately, and unable to do anything. And it's just getting me so down. No one should have to live with this kind of pain and suffering. I was awake all nite again from the pain. And I've been awake every nite this week from it. Plus POTS lightheaded attacks. And Migraines. Just all kinds of suffering. I'm so tired of this.

    Every time I think I'm getting better and that I might actually be able to do something, bang. It just flares back. And then I realize how unrealistic being able to do anything really is. I can't. It's never going to go away and it's unpredictable. It makes me unreliable. It makes me a crappy friend who can't do anything. Can't work, can't go to school, can't go to parties, can't do much of anything at all. Basically, if I can't do it from my home, and laying down, it's not happening. And lately, the flare has really rendered me useless.

    Anyone else feel like that? You take two steps forward, and then it's a hundred steps back with this disease.
  2. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    For the first time in six years, I felt somewhat better during the summer. I was so surprised! For one day, I thought I was healed. It felt so wonderful and unreal. When I feel down, I think of that day and I keep repeating that pretty soon I will feel like that all the time. You have to keep your hope up, otherwise life is too tough. Hang in there. HUGS.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    its a bugger and frustrating all u can really do is try to rest the best u can, medicated sleep is better then no sleep. ALso maybe have to try and look at how your treating your condition from another angle or maybe revisit some old treatments that once worked for you as they can sometimes work again. I try to reassess everything from sleep, infections, hormones, supplements and activity, some things can sneak up on you to. But like u said sometimes the little bugger just jumps out at you for no real reason.

    good luck,
    take care,
  4. pamb

    pamb Senior Member

    Edmonton, AB, Canada
    Hi Carrigon,

    I'm sorry you are going through a bad patch again. They really can get a person down. I know it is so hard, but I hope you can do as Marly does, and during the dark days focus on memories of the good days and take some solace that there is SO MUCH research happening now, better therapies will happen, if we can just hang in there a bit longer. I find it interesting that the definition of stress is not difficult situations, but having no control over the situation - and that is surely how one often feels with the unpredictability of ME/CFS, you do your best to take care, and then wham, you get blindsided. Do take care and dig deep to hold the good days close in your heart and mind. It sounds trite, but counting your blessings really is helpful when all is black. It helps let a bit of light in.
  5. maddietod

    maddietod Senior Member

    East Coast, USA
    Just want to say sorry it's so awful right now. When you get the energy, I second Heap's ideas about revisiting your treatment plan - maybe get a pile of testing done.

    The up and down nature of this illness is horribly discouraging, but the other side of that is that it does blip up as well as down. For me, always after I make a change in how I'm eating/lifestyle or in my supplements/meds.

    I hope you've got good pain meds.

  6. justy

    justy Donate Advocate Demonstrate

    Hi Carrigon, yes i know just how you feel about the ups and downs of this hideous disease. I feel at the moment like i am in a similar situation. strted coming up over the summer and i could really see that my year of efforts to improve were slowly and painfully beginning to show benefits. Then wham! i lost nearly ALL the ground i had gained over the preceding year and feel like i am back to square one. Its so damn frustrating! i am resting, resting, resting at the moment because i want ot be able to go and visit my new granddaughter next week. last week i wasnt well enough to go and io know i will be worse again when i get back. Like you i wonder when it will ever end and how i will carry on. But then i log on here and i hear something amazing or anoher piece of the medical puzzle falls into place or someone else posts about what i am going through and i feel suddenly less alone.
    sending :hug:

    Justy xx
  7. springblossom


    Norfolk, UK
    I can totally emphasize, I was at the point where I thought "Yes, I can go back to work" - so I did. And now I'm in my worst relapse of my life. I do cling onto those days where I was able to do things (albeit at a slower pace) and I know one day they may come back, and I am hopeful of that. But my M.E has always been like that, no real consistency, which in some ways I wish it was.


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