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So, something weird is happening. I haven& #39;t felt the tentacles of fatigue for 48 hours now. This has not happened before.
Yesterday I managed two walks, stayed upright the whole day, (sitting, and at times standing). I did some housework and played cards in the evening and
Yesterday I managed two walks, stayed upright the whole day, (sitting, and at times standing). I did some housework and played cards in the evening and
then the kids taught me an online game. This is not normal for me.
I felt no fatigue, I didn& #39;t need to lie down.
Just spent an hour and a half talking. I am very tired now but tired/weary. No fatigue, no pain, no noise sensitivity and I am resting upright in a chair.
I felt no fatigue, I didn& #39;t need to lie down.
Just spent an hour and a half talking. I am very tired now but tired/weary. No fatigue, no pain, no noise sensitivity and I am resting upright in a chair.
My brain is clear.
Trying not to get ahead of myself. (I barely slept last night imagining all the things I would do if the ME was no more - which is also why I think I am tired tired rn
https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙄" title="Gesicht mit rollenden Augen" aria-label="Emoji: Gesicht mit rollenden Augen">).
Ruminating on the reasons why this may have happened (in truth I have no idea why)
https://abs.twimg.com/emoji/v2/... draggable="false" alt="🤞" title="Crossed fingers" aria-label="Emoji: Crossed fingers">
Trying not to get ahead of myself. (I barely slept last night imagining all the things I would do if the ME was no more - which is also why I think I am tired tired rn
Ruminating on the reasons why this may have happened (in truth I have no idea why)
The usual pain is back this morning, feel like I’ve been hit by that proverbial bus (or perhaps more of a mini-van today to be fair).
Oh well, let’s see what today brings. Still hopeful.
Oh well, let’s see what today brings. Still hopeful.
4 days of no fatigue now. I don& #39;t understand - I have no idea what& #39;s going on. Feeling more optimistic each day https://abs.twimg.com/emoji/v2/... draggable="false" alt="🤞" title="Crossed fingers" aria-label="Emoji: Crossed fingers">
I& #39;ve been going over in my head, and with my family, what might have changed to cause this.
So. I had a head cold. Went onto my chest (I& #39;m asthmatic) and I coughed
I& #39;ve been going over in my head, and with my family, what might have changed to cause this.
So. I had a head cold. Went onto my chest (I& #39;m asthmatic) and I coughed
violently for 24 hours. At the time I commented that the last time I coughed like that was when I had pneumonia. I was also conscious at the time that I wasn& #39;t getting fatigue from the coughing which was strange.
I& #39;ve also not been pushing myself for a few weeks -
I& #39;ve also not been pushing myself for a few weeks -
the kids went back to school in September and that made a significant step change down in my activity levels. I had a presentation coming up which was a big deal for me (did it last Tuesday), so I didn& #39;t particularly increase my activity as I wanted to be as sure as I could that
I could get through the said presentation.
Also for the past few weeks I& #39;ve broken my habit of having a glass of red wine with my evening meal and my weight has inched slowly down a bithttps://abs.twimg.com/emoji/v2/... draggable="false" alt="🤷‍♀️" title="Achselzuckende Frau" aria-label="Emoji: Achselzuckende Frau">
I have had no PEM at all since the coughing day. Normally I& #39;d feel the fatigue in varying
Also for the past few weeks I& #39;ve broken my habit of having a glass of red wine with my evening meal and my weight has inched slowly down a bit
I have had no PEM at all since the coughing day. Normally I& #39;d feel the fatigue in varying
intensities many times a day. I& #39;ve not tried running yet but I& #39;m dreaming about it!
Despite a voice in my head telling me to be cautious, I went for an 11km walk yesterday, came straight home and cooked dinner and - this is the amazing bit - served up. Normally cooking exhausts
Despite a voice in my head telling me to be cautious, I went for an 11km walk yesterday, came straight home and cooked dinner and - this is the amazing bit - served up. Normally cooking exhausts
me (it& #39;s primarily the standing I think) and so the family is used to serving themselves. It felt amazing, and a bit strange(!) to be able to effortlessly carry on. I then ate dinner joining in with all the conversation and played cards in the evening!
I& #39;ve always said that some people do get better (7%?) and why couldn& #39;t that be me?
Am I better? It& #39;s messing with my head (I am NOT complaining though - it& #39;s a head-mess I& #39;ve long hoped for) - I had largely accepted what had happened to me, so am having to re-programme my mind.
Am I better? It& #39;s messing with my head (I am NOT complaining though - it& #39;s a head-mess I& #39;ve long hoped for) - I had largely accepted what had happened to me, so am having to re-programme my mind.
I& #39;m talking to myself, telling myself not to get carried away, but every now and then excitement, disbelief, incredulity and sheer joy erupts.
It& #39;s so weird, it& #39;s like a switch just flicked.
Wondering if any of this is useful info for anyone? What can I do to put back?
It& #39;s so weird, it& #39;s like a switch just flicked.
Wondering if any of this is useful info for anyone? What can I do to put back?
Update: over a week and still no PEM, no fatigue no need to lie down.
I went for a 12km walk the other day. Obv very tired after it (that nice, satisfying tired/exhaused when you& #39;ve done a lot). I woke up the next day still very tired (no fatigue though), and got scared, what if
I went for a 12km walk the other day. Obv very tired after it (that nice, satisfying tired/exhaused when you& #39;ve done a lot). I woke up the next day still very tired (no fatigue though), and got scared, what if
I& #39;d messed everything up by doing too much too quickly? Terror gripped me for a moment at the thought.
Anyhow, all is still going well (I don& #39;t know how to express the feelings in a tweet and I& #39;m still muting them as it is early days, but they bubble up from time to time).
Anyhow, all is still going well (I don& #39;t know how to express the feelings in a tweet and I& #39;m still muting them as it is early days, but they bubble up from time to time).
The narrative I find I am giving myself for this recovery is that I got a cold and somehow my immune system (or something) got reset. In truth I do not know the reason.
However I do know that my belief system or my attitude to exercise or my willingness to get better was not
However I do know that my belief system or my attitude to exercise or my willingness to get better was not
any different to the previous years when I was sick. As it was not different when I got pneumonia and sepsis and ended up with ME/CFS in the first place.
The only thing looking back that I would have done differently was not push through as much and not blame myself as I did.
The only thing looking back that I would have done differently was not push through as much and not blame myself as I did.
What would have helped immeasurably was an informed medical profession and public. The ignorance and prejudices add immensely to the burden of this disease.
It was not my fault I got sick, and neither is it down to any heroic achievement on my behalf that I am now recovered (https://abs.twimg.com/emoji/v2/... draggable="false" alt="🤞" title="Crossed fingers" aria-label="Emoji: Crossed fingers">)
It was not my fault I got sick, and neither is it down to any heroic achievement on my behalf that I am now recovered (
