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Suddenly feel completely well

Discussion in 'Immunological' started by Jenny, Dec 10, 2018.

  1. hinterland

    hinterland Senior Member (Voting Rights)

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    Yes, I’ve been caught out by this phenomenon many times. It’s definitely a thing. I’ll have a day or day and a half of feeling oddly well, start up some long neglected projects, get in touch with friends, chatty and brain working, make arrangements to do stuff and meet up... then, wham! I’m crashing with viral symptoms feeling as bad as ever. It’s really inconvenient and took me many years to suss out! It’s not simply push-crash, even keeping the reins on it happens.
     
    janice, leokitten, andypants and 8 others like this.
  2. Trish

    Trish Moderator Staff Member

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    Great to hear the improvement in your ME symptoms continues, @Wonko. I do hope the trip goes well.
     
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  3. Wonko

    Wonko Senior Member (Voting Rights)

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    Yeah, there is a problem with that, if seeing my sister actually works, and as a result I am able to resolve this, the depression goes, the ME comes back, how the bloody hell do I get home :nailbiting:

    Assuming I am right and it is the depression causing this remission.

    But now is not the time for being rational, for planning and working things out, now is just the time to start, and see what happens, hoping I can manage each step before I need to take the next. One of those type of things. Exactly the opposite of the way I have had to learn, been forced to, do things for decades.
     
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  4. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    When I travel, I box up everything that would go in my luggage and mail the box. I carry only what I will need on the train - books, food, writing material, battery powered radio, etc. I suggest you do likewise.
     
  5. alex3619

    alex3619 Senior Member (Voting Rights)

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    That is the same time window I get in my rare temporary remissions. Only they tend to end when I sleep, not start with getting up.
     
  6. Wonko

    Wonko Senior Member (Voting Rights)

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    I'm only going for aa few days, including Christmas day. Due to the blistering speed and efficiency of the British postal service at this time of year if I did that they might turn up at the hotel 3 weeks after I had checked out :rofl::hug:
     
  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Really glad to read of this interesting improvement @Wonko, but not the depression. Will look for updates on how things develop.
    Hope you get to enjoy some time with energy with your sister.
     
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  8. Wonko

    Wonko Senior Member (Voting Rights)

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    That was interesting, I now have useful information re this "remission".

    My sister lives about a mile away from the hotel I will be staying at, virtually everything is about a mile away, apart from touristy stuff. I need to know how far I could push this, where the walls were likely to be. Today I had an appointment for a retinal scan at a hospital, this involved catching a bus and then walking about half a mile. I chose not to take any crutches.

    As soon as I started it felt different than Fridays outing, less power, less control, more difficult. But okay, I was committed, I needed to know.

    It went okay getting there, 40 minutes basically sitting while I was there, on the way back significant, but not major, amounts of pain and discomfort from loads of muscles, some loss of control, basically bouncing around a bit. Still no worries, my body hasn't been used in years, it's bound to struggle, get exhausted and bitch at me when I'm trying something like that. Having my brain and body working well enough together so I could navigate people, cross the roads as and when I wanted, without worrying about traffic, was brilliant, absolutely fantastic feeling. It's been a long time, I know such things are trivial to most people but...wow.

    I'm going away so I decided I'd better get some more cat food and a few sundries, I have no idea what condition I will be in when I get back, so I catch a bus to Sainsburys. Get some bits but starting to have problems. Go to cross the crossing to get back to the bus stop to get back home and I froze, there were a few people, prams etc. and I couldn't work out how to move, so I didn't. That is a cognitive issue probably not caused by simply being tired, through having exceeding my limits for today. That is one of the early aspects of how ME affected me before I knew anything about it.

    So, not a remission, just a temporary improvement, a blip, normal service will be resumed shortly.

    I'm still taking it, I'm still going up north to see my sister, I don't care, I'll try and make the most of it while it lasts. I'll just have to take the crutches, and use taxis, like it was originally assumed I would.

    ETA - over 24 hours later.

    Some muscle aches, some ligaments, tendons and joints that are upset. No PEM, at least not yet.

    The only thing that is currently unusual is that last night I was actually hungry, ravenous, I must have eaten around 1900kcal, which is close to double the maximum I have been managing even forcing myself. My stomach has shrunk, 1900kcal in basically one 3 hour session, uncomfortable to put it mildly.

    Yesterday has convinced me that this is simply an intermission, not a remission. Although currently vastly expanded the walls of this prison are still simply to small. I'm hoping to use it to get what little I feel I still need to do done. One thing, the most important, at least to me, I have left too late and it simply cannot be achieved no matter how well, or not, I currently am, no matter how many resources I throw at it. It is, upsetting. That's life.

    I will post updates as to my physical and cognitive progress during this intermission.
     
    Last edited: Dec 20, 2018
  9. Trish

    Trish Moderator Staff Member

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    Thanks for updating us @Wonko. I can't imagine being able to do all that walking. How amazing. Sorry to hear some of the old symptoms came back. I hope you don't get awful payback tomorrow. And you manage to make it to your sister's and even enjoy it. Good luck.
     
  10. chrisb

    chrisb Senior Member (Voting Rights)

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    Sorry to hear it didn't last long, but at least it provides hope that one day....

    Reminds me of a visit to hospital a few years ago on a bright summer morning. Going, I was thinking "this really isn't too bad, I must get out more often." On the way home it was "Am I going to make it? This was a damn fool idea."
     
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    Over 2 days on, still no real sign of PEM.

    ...but, my body appears to be, slightly unhappy. My lower legs and ankles feel like they are made out of glass, energy just pours out of me, simply standing and attempting a slow hobble is exhausting, and either the pain levels or the exertion is making me feel physically sick.

    So, no PEM but hardly good.

    There is a definite possibility that Wednesday may have been a bad idea.

    ETA - I'm actually gaining weight again, 3lb since wednesday (2 days), I'm now back up to 15st 2lb. I am eating more, all 'healthy' foods, no junk or even particularly calorie dense stuff, but nowhere near enough to do more than slightly slow the loss. I suspect it's mainly water being used carry stuff to repair muscle tissue.

    ETA2 - after another 24 hours it seems I am now perfectly capable of doing virtually nothing, I can comfortably manage that level of activity with no issues. I am off on Monday morning so I am doing as little as possible to encourage recovery. I am recovering with no apparent signs of PEM, so not ME, just damage from my apparently excessive expectations given the condition it would seem my body is in after such a long time of disuse, coupled with the somewhat bloody minded attitude I have needed to adopt on occasion just to survive with ME.

    There is even evidence of advanced cognitive capability, despite trying to catch my next door neighbour, for days, to ask if he could cat sit whilst I was away, I have been unable to. Then it occured to me, drop a note through his door, extremely advanced and sophisticated thinking for me, it's virtually unheard of for me to ask for help, let alone this ;)

    So, despite being depressed, I am optimistic ;) (yes I know i can be a bit odd lol)

    ETA 3 - another day, no PEM, bodies okay, still a little grouchy but okay. Back down below 15st, so I assume I was right about the extra weight simply being water helping repair things, and it may also mean that the job is close to finished. Next door has even agreed to make sure the cats okay.

    This is bizarre, after 33 years, yes probably not real, just an intermission, but all looking good for my trip tomorrow.
     
    Last edited: Dec 23, 2018
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  12. Trish

    Trish Moderator Staff Member

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    Eek, sorry to hear this Wonko. Maybe it's a new version of PEM for you. Whatever it is, I hope it goes away quickly.
     
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  13. leokitten

    leokitten Senior Member (Voting Rights)

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    @Jenny I just had the same thing, first time since I got ME. For me a bit different I went ME-symptom free for 3 days as my cold started improving, definitely not just before it started.
     
  14. Wonko

    Wonko Senior Member (Voting Rights)

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    It's back.

    Nothing much right now, some OI symptoms for no reason (stood up in bath), some other little things, nothing that's definitely PEM yet.

    But it's back.

    I need more time, I need another few months, one of the things I need to get done is much more difficult and complex than I thought it would be, so it's taking much, much longer than I expected.

    So I suppose it's just wait and see if this is a slow slide down, if I can still do what I need to, or if it's going to be like being stomped by a herd of elephants.
     
  15. Trish

    Trish Moderator Staff Member

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    Good luck @Wonko. It's hard to imagine what it has been like for you suddenly getting back the ability to do stuff without PEM. I hope it lasts and this setback just turns out to be a temporary blip.
     
  16. Wonko

    Wonko Senior Member (Voting Rights)

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    Thank you @Trish but I think we all know the score on that one.

    ETA

    [insert swear of your choice] it!!

    Still OI, no PEM, but I can't even hold my head up now, I'm still bouncing with energy, motivation, and things I need to get done today, but I'm having to stay lying down, and even that isn't helping much.

    Even setting up some instant web hosting, for a little email server that I need in place by saturday isn't going well, something I thought was possible even lying down immobile. Apparently 'instant' means whenever we damn well feel like in Lithuanian.

    ETA2- Finally, I now have the capability to have a private email sent ;)
     
    Last edited: Jan 15, 2019
  17. Trish

    Trish Moderator Staff Member

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    Yeah, sorry, wishful thinking.
     
  18. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    I'm wondering how you know what it is like being stomped by a herd of elephants. :D
     
  19. Hutan

    Hutan Moderator Staff Member

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    I think it’s possible to extrapolate.
     
  20. dreampop

    dreampop Senior Member (Voting Rights)

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    @Wonko

    Very interesting following your remission period. I had a brief period without PEM, but it eventually came back in a mega PEM after about a month. I don't know what happened really, but other than that blip I've been very constant.

    I'm wondering if your experiencing some changes in the HPA axis since you said your depressed. IIRC depression actually stimulates the HPA axis, and not many things do, and that might be what your experiencing.

    Alternatively, you may be experiencing a change in metabolism related to over-eating, or a sudden increase in caloric intake. I have experienced (very short term) improvements in this regard during sudden periods of overeating where as I normally eat very little. I'm not sure of all the changes - there are no doubt a vast series of changes from such a sudden metabolic intake shift, hormones, peptides (leptin/ghrelin whih have been linked to CFS), who knows what else are all candidates.

    I have never sustained such high caloric intake, since I deemed it unhealthy and I suspect I'd just reach a new plateau and it is the change itself rather than static intake that causes a change in symptoms. Or perhaps it is the depression or something else all-together.
     

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