Read on Twitter
So, something weird is happening. I haven'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'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'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
).
Ruminating on the reasons why this may have happened (in truth I have no idea why)
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't understand - I have no idea what's going on. Feeling more optimistic each day
I'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'm asthmatic) and I coughed
I'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'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't getting fatigue from the coughing which was strange.
I've also not been pushing myself for a few weeks -
I'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'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'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'd feel the fatigue in varying
Also for the past few weeks I'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'd feel the fatigue in varying
intensities many times a day. I've not tried running yet but I'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'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've always said that some people do get better (7%?) and why couldn't that be me?
Am I better? It's messing with my head (I am NOT complaining though - it's a head-mess I'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's messing with my head (I am NOT complaining though - it's a head-mess I've long hoped for) - I had largely accepted what had happened to me, so am having to re-programme my mind.
I'm talking to myself, telling myself not to get carried away, but every now and then excitement, disbelief, incredulity and sheer joy erupts.
It's so weird, it's like a switch just flicked.
Wondering if any of this is useful info for anyone? What can I do to put back?
It's so weird, it'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'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've done a lot). I woke up the next day still very tired (no fatigue though), and got scared, what if
I'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't know how to express the feelings in a tweet and I'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't know how to express the feelings in a tweet and I'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 ()
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 (
)
I'm conscious that my experience will not be recorded in any stats or feed into any studies. I can't help but feel there is a solution to this misery if only we invested properly in looking for it.