My ME/CFS Journey Version 2 (this time more coherant)

[@andeebee2530]

Thank you for doing these videos. It can feel so alone out here. I’m really interested to hear about how you manage to do things, like travel, and your art - both things I’d love to do again. I’m able to sit up now for short periods but have managed a couple of hours upright as long as my feet are tucked up beside me. As you know every day is different. I’m also interested to hear what the brand/name of your wheel chair is. I have a four wheel Walker with a seat to sit on when needed but it still only allows up to an hour max out.

[@corey-me-cfs]

With art, it’s all about pacing and having some assistants. I can do a video about that. With travel, I have a short video here about that, and also a webpage at mywanderingwheels.com where I have a Traveling with ME/CFS section mywanderingwheels.com/2021/03/02/traveling-with-me-cfs/. My main wheelchair is a permobile m3 (though I hope I can get an M5 soon). There’s more about my chair on mywanderingwheels.com in the “Getting a Wheelchair” section.

[@irenes6627]

Andee your definitely not alone. Take care x

[@corey-me-cfs]

Also you are very much not alone. There are so many of us. There are Facebook groups where you will feel less alone.

[@andeebee2530]

@@irenes6627 Thank you Irene 💕🥰

[@andeebee2530]

@@corey-me-cfs Thanks so much, I’ll go and have a look 💕😊

[@AlbaLynxQueen]

My symptoms fluctuate so badly 😢 I can slowly clean the house, and drive the next day and so on. And be fine for 2 weeks. And then suddenly after resting I can be in muscle pain, have extreme exhaustion and brain fog, unable to read or listen to audio. My heart rate is 130 every time I stand. My doctors keep gaslighting me. Can it be M.E? Or the crashes can only be delayed up to two days?

[@sondresandal8331]

Hey, thanks for sharing as I know this is deeply personal. I am much in the same boat also having had my life flipped upside down in the last three years or so. Though I am able to stabilise through pacing, and when I do feel some increase in energy, this inevitably make me attempt doing more. However, usually this is not sustainable and I end up relapsing, which leads to further deterioration. I, like you, have been stuck in this pattern far too long, and I agree that you have to break this pattern in order to get some sort of control back from this illness. So my question is if you have any tips on how to pace up, based on your experience? I.e. how long should you plateau/stabilise before attempting to pace up and how incremental should each increase be? In my opinion this is the most challenging aspect of this condition.

[@corey-me-cfs]

So if I'm having a good day, I watch out! Instead of doing everything it feels like I can do, I just do a tiny bit more. It takes a lot of patience and discipline, but this way I slowly improve. When going on a new med, if it helps Dr. Bonilla at Stanford says to take 2-3 months staying at your old activity level no matter how good you feel if you want it to last, then to gradually ramp up.

[@corey-me-cfs]

See my playlists on pacing kzbin.info/aero/PL37Wwe9yltlLHU22C_BVE5Lw2GHaDg9MX and on avoiding crashes. Also this "good day" video. kzbin.info/www/bejne/jZnceql-h79-p6M

[@sondresandal8331]

@@corey-me-cfs Thanks for replying! I checked out some of your other videos, including the ones you shared links to. I find it inspirational that you have managed to live a meaningful life, albeit you have to do so within very harsh limits. Managing to go 24 months without crashing is truly an achievement, and I hope you can continue your momentum. I already went on LDN early last year, which I did see some improvements from. In fact the LDN enabled me to go without crashes for 4 months, but in september last year I ended up crashing again after doing something stupid. I have pretty much been on a downward spiral since, and although the LDN still makes me feel better than when I don't take it, the effect is not nearly as potent as in the beginning. I would also like to go on Abilify, but as I live in Norway it will be very hard to get a doctor to prescribe me this drug for ME. Our health care system in Norway is public, which has its benefits, but it also means doctors practice medicine in a very streamlined fashion. I will not give up trying to get on this drug, as I have seen it improve the quality of life for many people with ME, though not for everyone.

[@sondresandal8331]

Anyhow, I believe what you talk about in the video on how to handle good days makes sense. In that video you addressed how pacing up in a too steep fashion, inevitably will cause you to crash. I do feel a sense of increased energy if I pace, albeit painfully slow. However, I suspect that this is in part due to me rebounding back to baseline, which tricks me to believe my actual progress is faster than it really is. I will attempt to stabilise for longer than I have, maybe 4 weeks, before increasing activity by maybe 5 to 10 %. I am not sure I will be able to as this will require almost inhumane discipline, basically couch bounding myself for the majority of each day, even though I feel like I have enough energy in my body to do more. In any other setting this would be tantamount to torture, but as far as I can tell the alternative is that my life for all intents and purposes essentially is over.

[@corey-me-cfs]

@@sondresandal8331 yes- the alternative (getting more severe) is NOT worth it- then your choices disappear completely. Patience is your friend.

[@irenes6627]

Oh my word that must have been so very painful throughout labour. X

[@corey-me-cfs]

It really was. I got an epidural partway through, but the disk most likely had ruptured before that because I was vomiting from the pain- I almost couldn't see properly the pain was so bad. ...and I was a high level competitive gymnast, and then serious martial artist- we know about pain!

[@irenes6627]

Apologies I'm in a bit of a crash so I'm watching your video in parts. Sounds like your body had went into just shut off mode to protect itself. Sounds awful. Yes I constantly get cold sores, unwell child. Wow how amazing you were given that medication for cold sores and felt slightly better. Going to relax again then I will watch more. You are a gem. X

[@corey-me-cfs]

Yes- I try to keep most videos for us to 5 minutes or less but this one just needed to take that long.

[@corey-me-cfs]

Also I'm glad to hear you are pacing through it!

[@crystalakabeavergamingsubs9549]

What does ME/CFS stand for?

[@corey-me-cfs]

Myalgic Encephalomyelitis www.cdc.gov/me-cfs/