Great video I’m kinda lucky in that my crashes are few and far between to a degree. They hit approx. every 12-16 months and last for anything from 18-30 months. They are debilitating. However, 2 years ago I was in a horrific car crash and only just scraped through. Since then, I’ve not had a major crash though I feel like I’m ‘hovering’ or ‘on the brink’ without ever going down the plug hole. I’ll be honest, despite the overwhelming damage I suffered in the accident, I would rather face that than another crash. With the accident, even when I was told I’d be unable to walk for a few years or without aids (they were wrong... back on my feet and at work in 4 months), there was a clear ending. I always knew I’d recover and was always confident I’d beat their timescales. With my ME/CFS, I don’t know how hard it will hit or how long it will last, I still make work but at the expense of any free time I may have had. I’d come home from work and sleep until I went back... that included finishing at 4:30pm on a Friday and sleeping until my alarm went off at 7:30am Monday. I find ME soul destroying. To be floored for such a long period of time leaves you with nothing. I HAVE to work, so any chance of a social life suffers. I’ve lost contact with friends, have no hope of a relationship... My biggest fear is a flare up. I rest as much as I can, which is pretty much at all points I’m not working, but to lose contact with the outside works makes you feel so isolated. Non-spoonies just don’t understand. Nobody who hasn’t been here understands.
It’s pretty much a hard and fast scenario. I manage to work, but that takes all my effort so its home and sleep. That’s when bad habits creep in: not eating, not looking after yourself, removing yourself from from family, friends and all social situations. My last partner lived 60 miles and a 90 minute drive away and, when I felt safe to drive, I still found myself pulling into lay-bys and sleeping for 15-30 mins. In all honesty, there’s nothing I wouldn’t go through ahead of another flare up I’d love to have some amazing advice for other spooners but there’s nothing I can say that’s not already been said: management. Taking your time, doing small tasks with rests in between and, if there’s a big task, break it into small tasks. Try and judge your day and plan, though it’s almost impossible to plan through the brain fog. Nothing helpful, nothing life changing, nothing groundbreaking, I’m afraid.
Wonderful video, Simon. Excellent tools for dealing with dips, but also brilliant life skills. Imagine if we were all taught as children concepts such as acceptance, self compassion and nurturing, centering and grounding ourselves, simplifying, etc. Pretty cool to think about that! 😊💜💜
I pretty much just submit to my "crashes" and rest - and wait it out. Nothing else is feasible. It feels like a huge iron fist of fatigue / exhaustion, pain, flu-like sickness-feeling, nausea, dizzyness, and neuroinflammation is tethering me to my bed. I'm just so darn sick. 🤢🤮🥵😢🤯😰🥵🥶
Does anyone else get a crash when they try to 'level up'? My symptoms are minor and everytime I try and take up a new hobby I deteriorate completely It drives me mad
@@MECFSExplored hi, thanks for replying, I can lower my symptoms but when I try to improve my life, for example do a degree or take on extra hobbies etc I always crash,
Hi Gail I will send you the link asap - need to fix a tech issue.. I usually go live on my Facebook Page ME/CFS Explored on Thursdays at 5pm. I am now a coach and hypnotherapist who had ME/CFS and recovered and have been working with people with these and related conditions for 16 years
@@MECFSExplored Hello Simon. I just stumbled onto one of your videos posted on RUclips and concluded iI would like to experience more of them. So….Facebook live? Thursdays at 5pm? But 5pm where? You sound British. Are you in Britain? Five hours ahead of me.
@@gailducrest8851 Yes 5pm BST - I am in London. Here is the link to my page: facebook.com/mecfsexplored Once you find it you can join my group if you wish!
Re-label??? “Crash” does not imply that it won’t pass. “Crash” is the only word that people take seriously. And a crash IS serious. I can barely leave my bed. It can take three days to work up enough energy to shower. After that shower I have no strength to even hold a toothbrush. My brain won’t function. Trying to have a conversation with anyone leaves me in the land of the living dead. If I’m lucky this might only last weeks. Once it was three months but that was better than many. To call it anything else is to get the “it’s all in your head” response. It’s bad enough to not be listened to or believed. Why make it easier for them but harder for us by denying our reality?
@louk6196 Sorry to hear of your situation. In the video I suggested people consider what word they use, as some people get triggered by someone using the word crash for something that lasts half a day. However I take your point and could have been clearer - there are times when the word crash is appropriate. Apologies if that caused upset/frustration. I will add a note to this effect.
Great video
I’m kinda lucky in that my crashes are few and far between to a degree. They hit approx. every 12-16 months and last for anything from 18-30 months. They are debilitating.
However, 2 years ago I was in a horrific car crash and only just scraped through. Since then, I’ve not had a major crash though I feel like I’m ‘hovering’ or ‘on the brink’ without ever going down the plug hole.
I’ll be honest, despite the overwhelming damage I suffered in the accident, I would rather face that than another crash. With the accident, even when I was told I’d be unable to walk for a few years or without aids (they were wrong... back on my feet and at work in 4 months), there was a clear ending. I always knew I’d recover and was always confident I’d beat their timescales.
With my ME/CFS, I don’t know how hard it will hit or how long it will last, I still make work but at the expense of any free time I may have had. I’d come home from work and sleep until I went back... that included finishing at 4:30pm on a Friday and sleeping until my alarm went off at 7:30am Monday.
I find ME soul destroying. To be floored for such a long period of time leaves you with nothing. I HAVE to work, so any chance of a social life suffers. I’ve lost contact with friends, have no hope of a relationship...
My biggest fear is a flare up. I rest as much as I can, which is pretty much at all points I’m not working, but to lose contact with the outside works makes you feel so isolated.
Non-spoonies just don’t understand. Nobody who hasn’t been here understands.
Sorry to hear of your challenges Gio.
It is challenging and as you say, non-spoonies just don’t understand. How do you manage when you are in a crash?
It’s pretty much a hard and fast scenario. I manage to work, but that takes all my effort so its home and sleep. That’s when bad habits creep in: not eating, not looking after yourself, removing yourself from from family, friends and all social situations. My last partner lived 60 miles and a 90 minute drive away and, when I felt safe to drive, I still found myself pulling into lay-bys and sleeping for 15-30 mins.
In all honesty, there’s nothing I wouldn’t go through ahead of another flare up
I’d love to have some amazing advice for other spooners but there’s nothing I can say that’s not already been said: management. Taking your time, doing small tasks with rests in between and, if there’s a big task, break it into small tasks. Try and judge your day and plan, though it’s almost impossible to plan through the brain fog.
Nothing helpful, nothing life changing, nothing groundbreaking, I’m afraid.
Excellent Simon as ever thank you.
You are welcome Linda!
Wonderful video, Simon. Excellent tools for dealing with dips, but also brilliant life skills. Imagine if we were all taught as children concepts such as acceptance, self compassion and nurturing, centering and grounding ourselves, simplifying, etc. Pretty cool to think about that! 😊💜💜
Glad you found it helpful Cheri. Thanks for your feedback. I hope you are good.
I pretty much just submit to my "crashes" and rest - and wait it out. Nothing else is feasible. It feels like a huge iron fist of fatigue / exhaustion, pain, flu-like sickness-feeling, nausea, dizzyness, and neuroinflammation is tethering me to my bed. I'm just so darn sick. 🤢🤮🥵😢🤯😰🥵🥶
Sorry to hear that Anna, but good to hear that you surrender to it. Are you able to stay relaxed?
How are you doing now Anna?
Does anyone else get a crash when they try to 'level up'?
My symptoms are minor and everytime I try and take up a new hobby I deteriorate completely
It drives me mad
Sorry to hear that Liam.
Can you say a bit more about what you try and do and for how long?
@@MECFSExplored hi, thanks for replying, I can lower my symptoms but when I try to improve my life, for example do a degree or take on extra hobbies etc I always crash,
@@liam.4454 Sorry to hear. How long do you do an activity for?
When I crash, I do feel frustrated, sometimes. 🙃
If I'm okayish with it, I tend to come right faster but need to work on this 😄
Hi Trish - it is understandable! It is possible to feel it, allow it and to observe it..The crucial thing is that at some point, we let it go...
What is the finger exercise? When are you live? Who are you?
Hi Gail
I will send you the link asap - need to fix a tech issue..
I usually go live on my Facebook Page ME/CFS Explored on Thursdays at 5pm.
I am now a coach and hypnotherapist who had ME/CFS and recovered and have been working with people with these and related conditions for 16 years
@@MECFSExplored Hello Simon. I just stumbled onto one of your videos posted on RUclips and concluded iI would like to experience more of them. So….Facebook live? Thursdays at 5pm? But 5pm where? You sound British. Are you in Britain? Five hours ahead of me.
@@gailducrest8851 Yes 5pm BST - I am in London.
Here is the link to my page:
facebook.com/mecfsexplored
Once you find it you can join my group if you wish!
Re-label??? “Crash” does not imply that it won’t pass. “Crash” is the only word that people take seriously. And a crash IS serious. I can barely leave my bed. It can take three days to work up enough energy to shower. After that shower I have no strength to even hold a toothbrush. My brain won’t function. Trying to have a conversation with anyone leaves me in the land of the living dead. If I’m lucky this might only last weeks. Once it was three months but that was better than many. To call it anything else is to get the “it’s all in your head” response. It’s bad enough to not be listened to or believed. Why make it easier for them but harder for us by denying our reality?
@louk6196
Sorry to hear of your situation.
In the video I suggested people consider what word they use, as some people get triggered by someone using the word crash for something that lasts half a day.
However I take your point and could have been clearer - there are times when the word crash is appropriate. Apologies if that caused upset/frustration.
I will add a note to this effect.
Your posts have not been up for over two weeks
I was away for a bit. More coming soon!