Pre-Covid: Regular aerobic exercise that keeps my heart rate elevated to improve cardiovascular health and live to 100.
Long-Covid: Plan out exertion to try to keep heart rate close to resting to minimize crashing an hour or a day later, and be glad to make it through another week.
#LongCovidRecovery #MEcfsRecovery

I should do a final-final post about how I got better for #MEcfs and #MEcfsRecovery

"Our bodies need both rest & activity. The daily cycle between these can get smashed up. This is what I think #MEcfs is.

To fix; first I rested, then I paced, then, rather than "pushing through" I gradually moved activity & rest periods together to rebuild a smooth cycle.

At this point (and not before) I could exercise safely and challenge beliefs that were holding me back.
Good luck."

@gretebrug Sorry to hear German patients are being targetted too.

However, in my own case, it wasn't in fact misfortune.

In 2015 I chose to stand up for a group of #MEcfs patients brutally attacked by a researcher allied to activism

As a well-known advocate I knew that I was going to received years and years of abuse for doing so.

I would do again! Above all things standing up for others led directly to my own #MEcfsRecovery.

Please don't write to me here, I want to close this account.

@Katenockles

I am sorry to hear that your daughter has #MEcfs. I think it's important to maintain hope. I wasted a whole lot of time being defeatist about my illness.

I'm so glad to know you found some comfort in my words. I have, however, determined that is not safe for me personally to speak here on #mastodon.

Rather than dance around the issue I think it best to devote all the remaining energy that I have for #pwme to my #MEcfsRecovery movie. I hope you find something useful within it.

@KaneG This is a positive step for me.

I will make my #MEcfsRecovery movie alone, and this will be hard, but I'll take with me from Mastodon the knowledge that there are kind people out there & patients who really do want to get well rather than to fight.

This knowledge alone is hugely healing for me. There was a time when I simply could believe how the cruel and hostile the #MEcfs community could be.

Thanks so much for taking the time to write. I'm hope we'll bump into each other again!

Hades.
#Photography #MEcfs #MEcfsRecovery #Precommitment.

It's become clear to today me that Masto has already fallen.

The problem isn't the #birdsite, #Twitter, the problem is people's behaviour around the world today.

I'd like to thank my 627 followers so much for pressing the "Follow" button, I really appreciated it. More than this, I found it healing. Thank you!!

I'm sorry to leave, but I can see that ME patients & dishonest researchers will hound me wherever go & I've had enough of it.

During #MEcfsRecovery your life opens out like a flower bloom.

You can go outside.

You can go to the shops, the cinema, and sports.

And then you can climb mountains. And it's really odd and really wonderful.

And you can hug and spend time with the people you love.

@EikeT In context "Your" is a non archaic version of "one's". In context I made it clear three times over that I was talking about my own recovery:

"During my #MEcfsRecovery"
"I learned"
"That's what worked for me".

Please stop writing to me.

@EikeT

I could not have been much clearer:

"During my #MEcfsRecovery"
"I learned"
"That's what worked for me".

I think your complaint is nonsense.

During my #MEcfsRecovery I learned that it was more important to maintain a single daily sleep period and a single daily activity period than to align your body clock with an external alarm. Fix the cycle first, then realign it, that's what worked for me.
#MEcfs

This is tricky one. I want my #MEcfsRecovery movie to be honest, inspiring, and informative.

But the reality of my life with #MEcfs was brutal miserable neglect & lack of information and support.

How then do I present my experience in a positive light?

It's not easy.

Looking back over my illness and recovery there is however one thing that's been consistently constructive:

Through every horrible twist and turn: I learned something; I discovered something; I made a gain against the illness.

I just sent this to an #MEcfs patient asking for any #MECfsRecovery ideas....

"Our bodies need both rest & activity. The daily cycle between these can get smashed up. This is what I think #MEcfs is.

To fix; first I rested, then I paced, then I moved activity & rest periods together to rebuild a smooth cycle. At this point I could exercise safely.
Good luck."

But what I really wanted to do was to scream "Get off #Twitter! Save yourself from mean-spirited bias and deliberate disinformation."

You can look at all the stories of #MEcfsRecovery and deny them.

Alternatively, you can allow yourself a tiny little drop of hope:

Maybe there is a way out of the the hell of #MEcfs after all?

To be clear; for thirty years I didn't believe there was anything I could do to improve my lifeless miserable condition, but after I changed my mind, and allowed for the possibility of recovery, the ideas just kept coming.

And most were rubbish.

Then one wasn't... and at last I was free.

Good luck!!

When physicians, family, and society are unkind, or even utterly cruel, it is important not to dwell.

It's no good to lie abed endlessly torturing yourself over what has been done or said.

It is in fact a gift when bullies in medicine or activism reveal themselves.

You now have information that millions of others do not.

Despite how awful it may feel, your chances of recovery have actually increased.

#MEcfsRecovery #MEcfs

Over time #MEcfsRecovery kinda makes you forget some of the worst bits of #MEcfs and #severeMEcfs but if we put aside the crushing, painful, lack of energy and the social bullying that comes with M.E one thing stands out...

I remember just how lonely it was to be chronically ill, especially in the decades before social media.

Chronic illness is so isolating and patients do so well to stick it.

My #MEcfsRecovery didn't happen over night and didn't happen after physicians and researchers made sudden breakthroughs.

It happened slowly over time and it needed work and thought, both things that bring on #MEcfs's primary reported symptom, Post Exertonal Malaise, PEM.

Escaping me wasn't a dramatic escape, it was more like sawing your way out of a straitjacket with a nail file.

But, ofc, it was worth it!

The political dung heap in #MEcfs has wrecked the medicine and continues to wreck the medicine and the scientific research.

My #MEcfsRecovery was founded on two simple ideas:

I would not wait for liars to stop lying.

I would do everything I personally could to improve my own health.

It still amazes me just how far I got! I didn't think I'd consistently be able to get out of the house, let alone find myself training for a marathon!

But all the small gains, I made added up...

Good luck!

For many years doctors have advised #MEcfs patients to gradually increase exercise, avoid napping and to challenge their illness beliefs.

These are all well and good when you're in #MEcfsRecovery, but when you're ill, and especially when your health is declining, all this advice seems really unhelpful.

Even gradual exercise increase brings on PEM crash, illness beliefs are protective, and
napping isn't under conscious control... you just zonk out!

Something is very wrong with medical advice.

The most vital part of #MEcfs is the move that gets you from a disordered, chaotic, and frustrating & depressing daily activity budget punctuated by crashes, to *just being unfit*.

For me the key was timeshifting:

I stopped thinking about activity level & started thinking about *when* I was trying to do things.

This helped with pacing and it led to the idea of gradually nudging daily activities and rest together.

Gosh. I just can't wait to properly describe this in my #MEcfsRecovery movie!!

The most vital part of #MEcfs is the move that gets you from a disordered, chaotic, and frustrating and depressing daily activity budget punctuated by crashes, to *just being unit*.

For me the key was timeshifting:

I stopped thinking about activity level & started thinking about *when* I was trying to do things.

This helped with pacing and it led to the idea of gradually nudging daily activities and rest together.

Gosh. I just can't wait to properly describe this in my #MEcfsRecovery movie!!