Unexplained "Good" days/improvement

  • Hi folks,

    I'm soon to be jumping on the LDN train.

    But I wanted to ask/share on something else.

    Over the past few months, I've had two events/episodes of significantly feeling well, having lots of energy, low-no brain fog and honestly feeling human again. And getting SO MUCH DONE.

    The first was quite short (less than one day- I did some jogging!!), and the 2nd, about 6 ~ish weeks ago now, lasted 2.5 days. I did crash after the 2nd time but that was only because I kept pushing past when I started to feel tired again.

    This may seem insignificant but I truly felt like a different person. A 'normal' person. I felt well. It was such a foreign feeling but it just felt so good and right like 'oh this is what it feels like to feel normal and actually be able to do things, wow'.

    I have been dealing with ME/CFS/ME for about 13 years to varying degrees of severity.

    I honestly have no idea how/why these events happened. Obviously I would like to know as I want to repeat it.

    The only thing I can think of for the 2nd one was that I had been eating some red meat (lamb) around that time (which does sometimes help my brain fog a bit, but not everything else so monumentally).

    Can anyone suggest any tips for investigating this or what kind of records i maybe should be keeping?

    Or is it something that happens sometimes? I honestly can't remember the last time I felt like that. I felt well. And... strong. Not weak and frail like i usually do.

    Thanks all.

  • @coco Hi @coco ... this is really interesting. Our episodes of feeling good. I sensed your elation at the events and rightfully so ... ME is such a hard illness to manage ... Investigating feeling good. I feel you have made an excellent observation that should be investigated further. Is there research out there for this? I don't know ... What is happening to our bodies when we feel good ... I know that sounds like it has an obvious answer but is there something else that has happened or contributed to the episode. If so, it could be an indicator of how to get more of it. I'm waffling but sometimes when you can't find answers to things, you need to turn them upside down and look again ... For your own personal investigation and research, track what you are doing and perhaps get your GP on board to help you plan out a way to track this medically. A long time frame may be needed... maybe 12 mths to get a holistic view of you with ME. Thanks for sharing ...it has posed a lot of thought and questions 🤓

  • @coco What a great question. I too have times like that (though sadly they have got less over the years).
    I have wondered if it is like when I have had a plant that has almost died. I look after it, water it properly, give it some sun, fertilizer, mulch, keep it out of the wind.
    It sits there and sits there, not quite dead...
    keeps sitting there
    sit, sit, still hasn't died, sitting, sitting...
    and then all of a sudden, one day, it puts out little green shoots and looks alive again.

    Unfortunately, my experience is that when we get those precious little signs of life we not only have to avoid pushing through when we start to feel tired, we have to keep below some invisible, and impossible to judge, lower level of activity. So I have failed every time to keep that vibrant health going. 😞

    Re records
    It can be handy to keep food records, if you are iron deficient red meat might make a difference, but better to get a blood test to check.
    If you are like me, the amount of water you drink makes a big difference, and I function much better when I manage to keep hydrated. Also sugar effects me greatly (I feel poisoned, which is very like my ME/CFS symptoms when I have overdone it physically).
    So you might find something useful if you keep track of that.

    What might be useful is an energy diary as I was asked to do by the specialist (an exercise physiologist) I am seeing. These were her instructions: 'Just use the word high, moderate or low in terms of the energy requirement for each thing you do through the day, whether physical, mental or emotional energy. Also a brief summary of the activity, so that we can use it for planning. '
    I had an excel spreadsheet, but easy just to write them on a piece of paper.
    It was useful to do, it focused my mind and showed the patterns of what things were hardest. I already knew them, but it made it real and actionable to have it written down.

    I hope that might be useful.

    And I hope you get another vibrant time soon. 🌱

  • Thank you @Dot

    Yes I am in fact iron deficient and my dr. has recently started me on a course of iron supplementation. I was already taking one called 'spatone' but that is only 5mg per serve (only for maintenance, my dr. said) whereas the one she has now put me on (maltofer) is pharmacy standard at 100mg daily.

    so fingers crossed that, in time, will help!

    I also wonder if it has anything to do with amino acids. This is something I have wondered about for a while with me (I was vegetarian from about age 10-20 and then vegan for a little bit, I do wonder if that had some bad effects...)

    Anyway that you for your suggestions its all something to sit with. 🙂

    I know on some level that these could have just been 'random' occurrences but I won't lie that I definitely have felt a bit of HOPE. I'm sure anyone who has been sick for a long time could appreciate that. I really don't think I have felt that level of feeling 'well' since my early teens.

  • @coco hooray for iron supplements, I do hope they make a big difference.
    I was also a vegetarian for decades - and also no added salt, thinking it was healthy. I have a feeling that not enough salt might have led to problems for me (although having healthy amount of salts now doesn't make any big difference).

    You do have good reason to feel HOPE. Hooray! I hope another burst comes soon and that it lasts even longer. 🤞

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