#managing ME/CFS

[compassionmattersmost]

Embracing Mindfulness on the Journey of Chronic Fatigue Syndrome

For those of us living with post-viral Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), mindfulness can be an invaluable tool. When energy feels scarce and symptoms overwhelming, mindfulness offers a gentle, non-judgmental way to relate to our experience. It’s not about forcing ourselves to be positive or ignoring the very real challenges we face, but about creating space within our…

[helenwhiteart-blog]

Brain retraining or symptom tracking…but don’t they pull in opposite directions?

Remember the Gupta Program? It was my new favourite thing back in 2021 and I wrote a fair bit about it at the time. To recap, the GP is a brain retraining program which claims to help you recover from conditions such as ME/CFS, fibromyalgia, long covid and electro hypersensitivity. I deep-dived the program for quite a few months and, eventually, let it go which could be concluded to mean that I…

[vingler-mirror]

Got some isokania stuff from comifuro!!

The artists' twitters because they're very cool:

Fanbook, art prints, & udimo sticker -> @ourstickyart & @rtf_11th

Standee -> @ourstickyart

Photocards 1 -> @rtf_11th

Photocards 2 -> @chirokushi

Round pins & stickers 1 -> @aitonevy

Stickers 2 -> @etolalala

Stickers 3 -> @luckywolf_

Vienna shaker keychain -> @norigaring_

Isolde photocard -> @ariiex_

[iplaywithstring]

Set up accounts for the services I'll need on my practicum (interface for online counselling and work phone number).

Feels so strange. When I started the MACP I knew there was a possibility my health wouldn't let me finish. I don't think I really believed I'd get to this point. 8 more months and I'll be a licensed counsellor. Two more weeks and I get to start my practicum - I'll be working with clients under supervision. Unreal.

Next step is setting up my home office, including painting. I'll have help so it should go smoothly.

Might still crash and burn, but I'm enjoying it while it lasts

[crazycatsiren]

Is this a manic episode or am I feeling better physically after recovering from a whole spring season of flare-up? 🤨

[disasterhimbo]

Therapists be like: I can tell you’re really struggling, and I may not be able to help you, so the ethical solution to this is to deny you care entirely :)

[bookhobbit]

Did a lot of sewing stuff over the week and have been totally wiped and flu-y this weekend, again, thus reinforcing to me that it's very important to rest after work, the problem is I hate doing this which is why I keep not doing it.

I AM getting better about it because last winter I kept doing craft things in between work tasks, which made me feel flu-y every night instead of just on the weekend, although it probably also helps that I work less hours now. Also I've much reduced how often I'm doing sewing machine stuff on weekdays, it's just that handwork is so tempting because it doesn't FEEL like exertion. I'm just sitting on the floor moving my hands! That's basically phone!!!! It should be the same type of activity as phone instead of the same type of activity as sitting at the sewing machine!

The thing is I am deep in the weeds with my current quilt and it's always really difficult for me to stop myself this far into a project, so....it may be that what I need to do is accept that if I'm this far into something, I'm going to be floppy and sleepy on the weekends until it's done, and plan accordingly.

I'm also trying to reduce how fast I get into the "I need to do nothing but this. I'm tired of this not being done" stage with projects because that's a very difficult state of mind to resist. My strategy has been trying to do multiple projects instead of working straight through on one, which is sort of working mostly but I got into that state for two at the same time last couple of weeks, which is counterproductive. :/

[decora-kai]

Ok so, I've finally got dates for my various appointments, yippee ! Last appointment I had was with my physio maybe 4 months back amd ive been waiting for an orthopedics and pain management appointment ever since. Ive got the orthopedist in a week's time and an extra physio appointment a week after for follow up i think (I only found out today about the physio appointment). About a month after the physio I then have a pain clinic appointment which is what I'm most excited for as they deal mostly with patients suffering with chronic pain, like me, so I'm just hoping I can finally get a diagnosis even though Ik I should keep my hopes down.

Honestly, this is basically the only thing keeping me looking forward to living across this next month, I'm just just gonna keep wishing and praying that I can get things at least a little sorted in my life and that my appointment won't just consist of medical gaslighting as always

[fr0gg13b413]

i just want a number.

how many more days of planning my meals around drinking enough water.

how many more days of trying to eat as well as possible and struggling to keep the food down.

how many more days of being so scared seeing the scale going down and down.

how many more new symptoms, new rock bottoms.

when i will i really understand my limits and my pacing.

how many more days alone in my room in the dark before i start to recover for good.

i need a number. i need to know there is an end, i need certainty that i’ll learn to manage and live with this.

[saviourkingslut]

ill be honest there's something really funny about people adding edelgard (and hubert ig) to monastery chess clubs bc she technically canonically sucks at tactics. this is not what the game's narrative wants to convey but when you start a war with ample time to prepare a massive military force plus the element of surprise and also you have the Mole Sorcerers of Nefarious Plotting more or less on your side and then over the course of five years you don't succeed in annihilating a nation where you have already installed a puppet government and you haven't even had the chance to start in on the other nation on the continent i will say you are not beating the sucks at warfare strategies allegations.

[compassionmattersmost]

2: Imagining Movement: An Introduction to Gentle Exercise for Those Living With Post-Viral ME/CFS

When living with post-viral ME/CFS, exercise can seem like an impossible dream. For many, the simple act of getting out of bed can take monumental effort, let alone the thought of stepping into a gym. However, there are ways to gently integrate physical activity into your life without exacerbating symptoms—and these steps don’t necessarily start with physical movement. Sometimes, they begin in…

[purpleflameb0i]

Our dad thinking our chronic fatigue is from “sitting around” all day, when in reality, our chronic fatigue has gotten somewhat more manageable due to us “sitting around” because we aren’t overexerting ourselves all the time

Wild

-Unknown

[chronically-persistent]

I am once again experiencing the Horrors of medications, so here’s some information about ME and drugs.

People with ME are more likely to experience side effects when taking medicine at therapeutic or lower doses. This is particularly true with medications targeting the central nervous system.

If you’re experiencing side effects that differ from the typical population, you could be experiencing medicine sensitivity- please talk to a trusted health care provider, as they may be able to help with a more tolerable dosage.

It’s a cruel twist of fate that so often we need medicine to help manage our symptoms, yet they may also cause more issues down the road. But if you ever have concerns with your treatment plan, they are valid and deserve to be addressed.

Sources and More Information:

[tele-mesmerism]

when i got my diagnoses the cfs dx felt so secondary and less of a big deal than fibro but i wish theyd put emphasis on how much you can destroy your body permanently. but ofc they wouldnt have said that bc they were still teaching GET at the time, they were recommending treatment that wouldve damaged my body so much

[crazycatsiren]

How much my body has been craving movements, now that moving no longer hurts dreadfully. Which means I need to pay extra attention to pacing, because PEM is always on the waiting.

[haedia]

I started to say this in the tags but figured it might be helpful to add to a reblog.

I think having at least one condition that cannot be mitigated much through medication or other means really helps underscore the "this medication/treatment is keeping you functioning" for issues that can be treated. Like, it can, in a way, help be a reminder that you're doing so well in one aspect because of medical intervention.

My chronic fatigue is often disabling. I'm doing what I can to manage it but there are times when it just stomps through my life like a kaiju through a major metropolitan area and there's nothing I can do except endure (and after, recover to some degree).

I am regularly reminded of just how bad it can be.

Related, my depression used to be similar until my doctor and I landed on a dosage of medicine that worked. It took awhile to find what worked for me. There were ups and (very deep, awful) downs but my depression has been well-managed for more than six years now with minimal tinkering. I'm immensely grateful for that fact.

And I know, logically, that the times when this wasn't the case, I was deeply miserably, even if I can't remember exactly how bad it felt. I could see how someone could be lulled into thinking "Oh it couldn't have been that bad. Besides, I feel so much better now. Maybe I don't need the medication as much" and then make a series of potentially awful decisions.

But, since I also have hideously bad chronic fatigue, I don't think I'll ever fall into the "I don't need this anymore" trap. Because, Damn, do I wish I could have a treatment regimen that worked as well for my fatigue as I do for my depression. I have an instant, near-constant reminder of how it could be still, albeit it with a different condition — but one just as life-disrupting, even if it's in a different way.

This isn't me saying we should all have a bad thing to remind us of how good we have things in another area. It's just an anecdote. But maybe making a point to note how bad it was and regularly returning to it as a reminder of how things could return to that point can help avoid making some Real Bad Decisions.

Something like:

"This is you from the past. Yes, it really was that bad. You used to (insert fact of how you felt) regularly. The medication is working. That's why you feel better. Do not stop taking it without talking to your (doctor/medical team/etc) first"

I started using Head and Shoulders ten years ago for itchy scalp and dandruff, and then for ten years I have not had itchy scalp and dandruff, so I thought “why do I still buy shampoo to combat itchy scalp and dandruff when I do not have itchy scalp and dandruff,” so I stopped buying the shampoo for itchy scalp and dandruff and can you guess I have now? Can you predict what currently afflicts me? It’s alright if you can’t because apparently I fuckin couldn’t either