It hasn't gone away

Blog entry posted by Wolfcub, Jul 31, 2018.

....It was a 3-week "remission", apparently.

But it's okay. I am trying to be positive though am disillusioned again today. Three weeks is the best there's been yet. I can only hope another one of these remissions will come and maybe that one will be the same -or longer? Dare I hope?

Busy weekend and family visiting. I felt just fine. I thought -wow if I can cope with all of this and not feel rough and be okay even though I didn't get the full 8 hours sleep a couple of nights, yet can wake up fresh as a daisy and feel okay....then surely I have to be getting better? doesn't work that way. Monday my visitor went home. Got 9 hours sleep Sunday night. Monday night I slept well and soundly, and woke up feeling like I wanted more sleep. Then the eye twinges started, and a terrible leaden-legs weariness, and wanting to cry again over nothing, and heart palpitations, and not able to focus or something (for want of a better word) on anything I was interested in or like dearly. Like half of me isn't present.

It seems this is PEM. It's def. "malaise" and not just "I had a busy weekend and I need an early night".

Rollercoaster ride -eh? I am disappointed in the return of symptoms. Many of the same symptoms which came suddenly on day one -March 27th. Especially as I had been feeling quite good over this last 3 weeks, 99.99% my normal self. And had been doing a lot of physical things too which didn't hurt me!
It seems to make no sense that one weekend of a very pleasant family visit can crash me when 3 weeks of working on firewood in hot weather did me no harm!

Sorry everyone because I know many have it tons worse than I do. But hope is dashed -yet again.

This isn't a pity/self pity thing as much as a feeling I can't escape whatever the heck this nasty thing is. I guess you all feel that. And the surreal situation is it makes you believe you HAVE got out of its clutches, for weeks before it comes back at you again.
Mary, Runner5 and Sidny like this.

About the Author

I am in my 60s, retired, live in beautiful countryside and always had active outdoor life. Sudden onset of CFS-like symptoms. Not diagnosed definitely yet with ME/CFS. That could take a long time in my health system. Probably years and many tests. Tests so far all "normal".
  1. Wolfcub
    Nope....haha! Thanks for asking me dear Runner5. I am having a relapse. It will pass, I do know. Kind thoughts and take care :)
  2. Runner5
    How you doing Wolfcub? Feeling any better? Getting back some pep?
  3. Wolfcub
    Hugs right back at you too Runner5 :)
    Runner5 likes this.
  4. Wolfcub
    Try to drift, and dream Shoshana. Listen to some beautiful music if you are able. Thoughts will come back when it is the right time. Kindest wishes :)
    Shoshana likes this.
  5. Shoshana
    I cannot remember enough or think clearly enough, to reply, right now, but thank you for thinking of me, and I am thinking of you. :)
    Wolfcub likes this.
  6. Runner5
    Wolfcub likes this.
  7. Wolfcub
    Yes of course I will let you know about the appointment Shoshana.
    Do you get that pain only over one eye? I do. In my case it's mild, but I hate it particularly because it brings in all the other stuff with it. When the eye doesn't ache, I don't feel unwell in other ways too. Yes I'll let you know. Kind thoughts to you. :)

    (edit) Are you negative for intracranial pressure/temporal artery issues/sinus infection/glaucoma?
  8. Shoshana
    Please (tryto) remember to let us know how that appointment goes. I have similar eye/head pains, too. I care about yours, even if it is totally different from mine, ;) and any ideas for me, about it, will be welcome as well. :)
    Wolfcub likes this.
  9. Wolfcub
    Thanks dear Shoshana .... and Kurt -thank you for letting me know about "immune cycles" because I'd never heard of that. I'll read up on it.
    I have a neurologist appt. in 54 days' time re: the head/eye pain thing. My bet is nothing will show on an MRI and he won't have a clue what's going on....we will see anyway.

    Thanks for thinking of me Shoshana. Blessings :)
  10. Shoshana
    Awww..... I am sorry it came back! I was hoping you were truly climbing out of it. I am glad that you updated us, as I have been thinking of you and hoping for you. I don't see it as self-pity at all, to feel disappointed and to share the feelings and the reality of what is happening, with us! I will hope that what you said , that remissions could come again and last longer, for you, and come sooner. Definitely let us know! :)
    Wolfcub likes this.