Chronic Fatigue Syndrome Crash Recovery

Thanks!

I think it's so beautiful that you are recovered but don't forget how it was to be ill and are still helping others. You have and are a gift!

This is so validating. People don’t understand when I tell them I don’t even have energy to watch tv. I listen to a whole lot of podcasts and the occasional audiobook. It’s a very frustrating illness.

Oh my gosh! This is SO bizarre to me! You are describing the way I try to tell people how I feel but it's so hard to explain. The feeling of being "pushed down" into the ground, the heaviness in my core, the way I feel poisoned, the scariness, the dread of getting up and moving, using being distracted to TLC my way through the scariness. I can't stand people talking or complaining or telling me what's on the news when I tell them I do not want to hear it. The news, drug commercials, people complaining or telling me their problems makes me so weak. You don't mention the off-balance/dizziness/VERY weak problems with walking. So horrible!

Thank you for sharing. I’ve done all the CFS recovery programs and they sometimes give the impression that you need to use all the “tools” during a crash, which is kind of the opposite of just total rest. I’ve too found total rest is the only thing that actually lifts a crash. The stress and pressure of having to use the tools and the blame and guilt for not doing them or having not the program correctly to end up in the crash is bad. The programs are good overall, but your blunt honesty about the best thing to do in a crash is such a relief to hear.

Oh raelan I resonate with this 100% in the past few months I have learnt to surrender to these crashes...have a little cry and release the emotion and then just try and embrace it...enjoy the sleep and Netflix 😊 I have noticed as I am getting further into my recovery I'm bouncing back a lot lot quicker...I really do think that some of that is due to mindset too 💖

I'm having a crash right now...this perfectly explains how I am feeling. It's soo hard to explain to others as they struggle to understand.

How long are your crashes!! For me it comes and goes. The anxiety and depression and hopelessness don’t. I don’t nap. When I am crashing I feel that I am letting everyone down and my life is passing by and this is my new future. I don’t hear people saying they are depressed when fatigued. I am very sad and lonely and depressed. It’s awful.

So well done. Exactly how it feels...I even sleep in my clothes...cant shower. God bless you. ❤😊

Yes, feeling as though you've been poisoned is accurate. I also say it's like wet concrete is running through my veins. Audiobooks are a godsend during a crash, and wheat bags seem to help with pain where painkillers often don't. I get teary too, but crying always makes me feel better. Everything you describe is so spot on. Sensory overload etc. It's really nice not to feel alone in this. Thanks, Raelan.

So validating. My husband use to just look at me and say go back to bed, I got everything. He would look after the kids while I did whatever I needed.

I relate to much of what you're saying Raelan. I've had ME/CFS for 18 years and counting (though I did have a 4 year remission in 2008-2012). I describe it as trying to walk under the weight of 18 elephants while wearing a lead suit that's weighing me down while wearing wellington boots and trying to wade through mud - I have to push, push, push to move - and it near kills me, but I have to go to the loo so I push my body even though it feels like I'm about to die from heart strain. When it's very bad, I take just one step and my body feels as though I've just run a 27 mile marathon. I simply cannot move any more, but I have to get to the toilet, so I take another step, which again feels like I've run a marathon - so that's 2 x 27 mile marathons in 2 steps - not nice. Dr Sarah Myhill says it takes 2 to 3 days for the body to recycle (and therefore to be able to use) ATP, the body's energy currency. In ME/CFS she says we can't make ATP quickly enough so we have to wait until the recycling process is complete - 2 to 3 days. Healthy people make a continuous supply of ATP, their energy is continually topped up - supplied on demand so to speak. Not so with us, once our stores are used up, they're gone. We HAVE to sit/lie down and do nothing until we've made more ATP. Sometimes, healthy people think we're OK once we've 'come round' after a crash, but that's sooo not the case with me. I feel like I've just walked out of a car crash and still feel so exhausted I can barely move, but at least it's easier to move under the weight of 5 elephants than 18. Hoping and praying I'll have my own recovery story one day - hoping I'll be able to contribute something beneficial to help others out of this awful condition.

I've always described that feeling of weight/pressure as being like "jetlag + extra gravity".

I relate to so much to what you said here. I often mentally repeat to myself "think like a researcher" and will literally imagine that I'm a giant researcher looking down on my life as if looking at a rat in a cage. I know that sounds negative, but it's been super freeing, because it helps me take the pressure off of myself and realize how much environmental factors affect me. Re crashes: I've found that the hardest thing for me is requesting people talk less. We have a society that favors extraversion over introversion. It isn't considered rude to try and engage someone in conversation, but it is considered rude to try and end a conversation. I'm very sensitive to sound and just easily overwhelmed by other people's thoughts and ideas during a crash, but I also know isolation isn't helpful. So this is something I continue to work on learning to communicate about, and I remind myself that I'm not only navigating an illness flare, I'm also having to resist the dominant cultural norms at the same time, so I give myself some grace if it doesn't always go perfectly.

Long Covid survivor here. I'm in a crash right now since March 9, 2022 after overdoing it with work school and family responsibilities. A CFS crash is comparable to a computer that needs to reset itself and goes on Auto Shutdown. Theres nothing I can do because my body is on autopilot. I can only eat breathe sleep repeat until my energy levels return. I will never over exert myself again or put that much on my plate again. I think one positive of CFS (if there ever could be) is its taught me is to set healthy boundaries and take better care of myself. Thank you for the helpful videos they are saving my life right now and reminding me that "this too shall pass."

omg i always feel so guilty for binge watching things but you made me realise how much that removes the decision fatigue, and that helps at lot for me actually

I’m still in a crash that started after a miscarriage, followed by a medical trial three years ago. I have since slightly improved and crashed again several times. In september 2020 my dad had an aortic aneurysm and almost died, they also found that he had terminal lung cancer. In January, I got covid, in May I almost lost my brother in a house fire. A few weeks ago I had to have a lot done at the dentist’. So it’s just been one thing after another and I haven’t had time to process or recover in between. My dad has luckily responded amazingly to immune therapies and his tumour was almost completely gone at the last x-ray. But wow….I am tapped out…

One of the BEST descriptions I've heard describing a CFS crash! Thank you for this video! I plan on sharing it with friends and family.

Raelan, this is the greatest of all your many videos. HOW many times I have tried to articulate what the crash feels like. That feeling of being profoundly unwell. And yet, how to describe it? There is nothing I could ever compare it to. I love your idea about if they could only have it for 5 minutes; they would have such a better understanding. Oh, btw, I don’t particularly have CFS but rather fibromyalgia and my crash is just about exactly as yours. Conserving energy. Yes. I explain that I need to lie in bed and be as still as possible, lying like a mummy (although unwrapped). The last time it happened I discovered that even trying to do something as simple as joining family/friends at the swimming pool in the backyard (no children, so not a lot of activity) merely prolonged the crash. I couldn’t manage it and had to return to bed. I had thought it would be a nice and good thing to lie on a float in the sun and bob along. Tsk! I couldn’t even make it up onto a float. Your description of your crash experience is so much my own. I am going to send this to a couple of people; and save it for if I need it in the future. I LOVE that you are putting out more videos. A very few years ago, 3 or 4, there wasn’t nearly this amount of information floating around about CFS and fibromyalgia. You your own little self must be helping hundreds of people. Stay well; stay happy.

Exactly 100% how I feel in a relapse. But mine never last only days. They last months which makes it so much harder to cope 😫 😪