Discussion in 'Fibromyalgia Main Forum' started by sascha, Jan 9, 2011.

  1. sascha

    sascha Member

    it may be very brief- i realize that- but, how amazing. a week ago i went up to Pt. Reyes, CA, and found myself walking down steps to lighthouse- then back up. steps are equivalent to a 30-story building. I DID IT! I ENJOYED IT! whereas i hadn't walked except back and forth to car for ages. couldn't walk without severe repercussions. was so discouraged with atrophy settling in more and more.

    every day since i have felt just about free of cfids symptoms and have continued to WALK challenging steps and hills (san francisco is full of those) and i have loved doing it. whereas the slightest bit of that before would have had me screeching to a halt with racing heartbeat, light-headedness, pain all over, severe pain going up the back of my neck and into my head, and then i'm done for-i just collapse with nausea and head pain, with every bit of my being screaming at me to stop the activity that's causing the intensified cfids symptoms- NOW, and for the 7th day yesterday, i LOVED pushing my muscles to take me down then back up steep hills and stairs.

    I CANNOT EXPLAIN IT, and i don't expect it to last- but what a dream condition to be in- free of the usual debilitating symptoms. i plan to keep pushing the walking as long as i possibly can. it is so FUN to move!! i could cry right now i'm enjoying it so much.

    i don't want to jinx it.

    anyone else have this happen?? anyone else able to shed some wisdom on this phenomenon??

    what can i say- i wish we'd all get permanent cfids remission- best, Sascha
  2. spacee

    spacee Member

    Have no idea why, but I am so happy for you!!! Wondering if somehow a virus went into
    remission. There have been spontaneous remissions!!!

    Hope your health stays!!!

  3. mbofov

    mbofov Active Member

    I'm very happy for you - I hope it continues!

    Are you doing anything different? Started or stopped any supplement or prescription or changed your diet in any way?

    Spacee may be right, that some virus has been suppressed.

    Happy walking! (I used to love to walk, one of my favorite things to do)

  4. sascha

    sascha Member

    i'm suddenly getting sick- really sick- i was just over with grandchildren & family yesterday, and people have been really sick there- temperature, all sorts of bronchial congestion. i now feel temperature and achiness all over coming on.

    well- it was nice while it lasted- cheers to all- Sascha *the couch done gots me once again
  5. spacee

    spacee Member

    If it happened once, to me there is hope that it can happen again!!

    Sorry it came back so soon. Really a bummer there :(

  6. sascha

    sascha Member

    i'm going to follow up on the suggestion of going to the ocean. i live not far away. i can make a point of going there to walk. except i don't know yet if i'm back in non-walking state as i have been for years. but even when ill i can go and open windows- let sea air in.

    i want to keep my mind wide open to all possibilities and potentials for improving my ill and weakened state. the sickness symptoms that were coming on yesterday seem lessened today. if i can i'm going to go and walk by the sea by the sea by the beautiful sea.

    this cfids condition - and i'm sure i've got fm, too, to lesser extent- is most baffling. i KNOW i tested high for HHV-6- Dr. Monotoya at Standord said i tested highest of anyone he's ever seen. i'm part of his current 60-pathogens study, but won't know results for a while.

    what is so mystifying is the waves of symptoms washing over me almost constantly. yes, maybe it's the virus. maybe it's other toxins/varmints i'm somehow harboring. it's just a weird thing to live with- as we all know.

    i long for clarification. right now i'll see where i am today in my recent reprieve from the cfids miseries. best, sasc
  7. sascha

    sascha Member

    found perfect exercise route around where i live. there's a 15-minute circuit that involves walking up and down short sidewalks by hilly streets. then i turn off and climb up 99 steps! and stop to pat the cat (first time around). then down another sidewalk, then up another set of stairs (77 steps).

    i am feeling some illness symptoms from i think my grandchildren and their parents. i picked something up there.

    i have not found it possible to walk without too much pain and too many cfids symptoms that get worse - FOR YEARS. so what is going on. maybe i don't want to know. just go with it for as long as i can. that's 352 steps UP when i go around twice. holy moly.

    i shall have to report back in if this continues because i'm so excited. this is unprecedented - could not have done it these past number of years. but as i say- it may not last- is so fun and wonderful and heartening. i wish it will happen for you all- sascha

    my treatment plan at the moment - if it's relevant- i don't really know for sure- is acyclovir for the high HHV-6 i tested positive for; wheat-free diet, i stay off sugar completely for stretches of time, then UH-OH, and i am working fairly consistently with EFT/ or meridian tapping technique (MTT).

    ok then- good luck-

    FOYBOYFOY New Member

  9. sascha

    sascha Member

    down she goes (me)--yesterday i was in crash mode- stayed in- on the couch. went to bed very early with no dinner.

    i was foolish to forget myself like that. i was so excited to be walking i let all caution go. OF COURSE there's a lag effect. i should know that. the next day, down i went.

    last March i forgot myself and was dancing wildly around with my grandchildren- and went down the next day like a tree being felled. i was absolutely laid out, sick, incapacitated for two weeks. spend one day in emergency room at hospital. i had trouble breathing. they diagnosed bronchial asthma and prescribed inhalers.

    i just want to move so much i forget myself. i HATE not being able to do things. hate it!

    BUT now into my second day, i am rebounding, which would/could mean i've made progress over the time before when i was out for two weeks. so maybe something is paying off and it just takes time to re-route myself to moving towards improved health. i DID walk. i was able to. that's something i must not forget.

    maybe the point is never to give up- but for me practice not making the journey a big fat struggle. just keep making inroads where and as i can.

    NEXT TIME i try that amazing walking route, i'll go around just once, and not be stupid. best, sascha
  10. emmanuelle

    emmanuelle New Member

    Hi, I'm new here. Really enjoying your posts. Thanks for sharing your journey!
    Don't feel stupid; we need to enjoy the good days-- good moments. (Every time I have a good day, I think, "this is it! I'm cured!") The thing that's made the most difference in my life is just making the best of where I am on any given day. Acceptance. This is my life, this is my illness. Maybe I'll get well some day-- maybe not. But for today, I'm going to do what I can to enjoy myself.
    Some days it's hard to judge how much energy we can afford to spend, and when we feel good, it's so intoxicating and tempting to just go and keep going! I'm just glad you spent the day at the ocean and not cleaning house!
  11. sascha

    sascha Member

    it really meant a lot to me; thanks so much.

    so this is where i stand today--i had two down, resting, doing nothing days. this means i was feeling stress in my breathing, was light-headed, weak, couldn't move easily. all internal engines quit on me. so i didn't move beyond barest maintenance. and i notice that ALWAYS when this happens, my spirits plummet. i can't conceive of every coming out of that downward spiral. when i physically crash out, i crash out emotionally, too. and mentally. should certainly know that by now. must always keep it in mind.

    i got good words of wisdom from you all.

    then today, third day after my two walking circuits and resultant crash, i find myself rising up into ok-land once again. this is stellar for me because of my prior experience when i was severely down and out for two weeksd with day in emergency room from too much exertion. I DID NOT FALL SO FAR OR HARD THIS TIME, it seems, and i made a quicker comeback. this is so exciting-- but as we know, always the course of our illness is mysterious and fraught.

    oh the books we could write!

    but here i am contemplating a WALKING CIRCUIT again today. this is truly amazing. i would like to chart my course now by posting online- although if i go down and it's depressing, not so much- i just won't feel like it.

    but a couple of thoughts that may be relevant: my grandkids pushed me into more physicality- i am stronger because of that. and i believe MTT/EFT help me along- the tapping of acupressure points while working on issues, both physical and emotional.

    WE SHALL SEE WHAT WE SHALL SEE!!! best to all- Sascha