Are there any people on here with ME/CFS? How do you stay sane?

[ChronicallyMEAgain]

*Please no “advice” on how to cure it, the lightening process or other such things. I have seen many professionals in this field, many times.

I still hope of recovery, but if your Aunt’s cousin’s friend’s cat Mary found a cure by training for a marathon whilst teaching a Goldfish to sing, they didn’t truly have ME/CFS.*

I’ve had this awful disease for over a decade and I’m really starting to wonder what the point is anymore. (I’m not depressed, I genuinely just exist and wonder what the point is).

I still get up each morning, get dressed and get 3 DC out to school. By the time I get home from this I’m out of energy and I end up back in bed before elevenses.

After they are home from school, I get around an hour with them before I’m exhausted again.

I spend the majority of my days lying down in bed, because sitting up makes me exhausted. (Then add in the chronic pain, nausea, dizziness and all the other wonderful symptoms).

I do have some better days where if carefully planned, we can go out as a family; I use a wheelchair for these days out. However, such is this disease, that I suffer later that night or the next day and the cycle starts again. Admittedly, when I’m feeling slightly better, I’ll seize the day and do everything I possibly can. I know that’s not recommended but I spend the majority of my days feeling rubbish so I take full advantage of this rarity.

I have no hobbies, a small amount of friends who I see every couple of months. I lost my job a long time ago and haven’t been able to work since. I’m grateful for the financial support I receive from benefits, but I feel like scum and it is intensely worrying being at the mercy of benefits which can be taken away without a minutes notice.

There’s so much I would love to do and I’m so frustrated. Life is passing me by and I’m getting older.

What do others do to keep themselves sane?

22 years since a flu vaccine triggered mine.

I'm not even sure I am sane at this stage.

I'm possibly deluded but still live in hope that I will blunder across a magic fix.

Last year was hyperbaric oxygen and vitamin c infusions.

This year I'm looking into genetic, specifically the MTHFR gene and subsequent B vitamin issues via a naturopath.

I guess my hobby is trying new treatments. Sometimes I even bore myself.

Not sure how old your children are but it does get easier when they are independent.

@stayathomegardenerthank you for replying. Sorry to hear you’re suffering too. It really is a miserable illness.

Do you work? If not, how do you entertain yourself?

I’ve had it very severely for 2 years thanks to Long Covid.

Ive tried lots of things. Most of which made no difference.

However I’ve had significant success with a Nurosym which is a trans vagal nerve stimulator.Not cheap, but can be used when and if. It definitely gives me more energy and a clearer head.

I used to be a garden designer but it was too much both physical and mentally.
We run an Airbnb and a dog park on our farm on top of sheep, chickens, ducks, vegetables and hay... I am really not coping well and delegating more and more to my DH who also has health issues and is 12 years older...
My mum is 91 with dementia and Dd 26 with ME issues too.
Downsizing looks more appealing every year

About 5 years for me and just popping in to say you're not alone and voice my solidarity, I'm finding the ME social media landscape too despairing atm. I need some hope, even if that includes a large dose of denial, or I think I'll lose my sanity

I tried a vagus nerve stimulator without much success after being hit particularly badly with covid 2020, I do think they have come on enormously well since then so would certainly reconsider.

Currently trying Ivermectin and Infared saunas both of which are helpful (I think!) #desperate

Dh made me buy it. He works in medical devices and says there’s no way it would have had the support if the NhS or gain a CE mark without really stringent tests.

Thinking about low dose naltrexone too. This can be obtained from Dickson chemist in Glasgow. My gp recommended it, but no one in the nhs will prescribe it. Even though it has demonstrated some very successful results.

I did recover to around 90% pre catching covid.
I know some people are wary but Dr Myhill's protocol was a godsend for me.

Hello. I've had it around 3-4 years triggered by covid. I work so I am mild. But as they always say on me groups and me Association, mild ME is not a mild illness.

I have managed to keep fairly stable. I've used visible for about 1-2 years which helps pace.

I think I've done quite a bit of work on just accepting it. It was terrible the first year feeling so scared and railing against feeling so awful.

I try and find joy in smaller things but I do get fed up a lot too. Work is a good distraction though I feel ill every day and have to get on with it often when I know if I didn't have to work I would be lying down. I've set aside all social life really.

I text my friends a lot though don't see them much. I try and enjoy being at work for some human contact.

I've learned that watching TV is not the same rest as properly lying down with an eye mask on and curtains shut. I've got very into audiobooks.

Deep breathing helps.

I'm a single parent to an child with autism so that is tough. I don't have any support so just use a lot of online deliveries and have lowered my standards with the house.

It's shit really isn't it? I have found my Facebook MEcfs group a godsend though.

@ArseInTheCoOpWindow omgoodness I freaking love LDN got me from completely bedbound to functioning.

I take that and HRT.

@ArseInTheCoOpWindow will seriously look into this device next week. Thanks

I've been thinking about this. I know of someone else who uses one with some success. I'm not sure that the fatigue is my biggest issue sometimes though..I have a lot of pain and buzzing feelings and fluey symptoms that drive me mad. Hard to know what is the worst. It's like moving goalposts all the time I think as symptoms fluctuate.

Ugh buzzing feelings. My head used to feel like a wasps nest. It helped with that.

I’ve been putting it off as l keep seeing it messes with sleep.

Brilliant. I may go for it. Btw anyone else considering it, you can get vat relief so reduce the cost a bit. There's a form on their website.

Have you heard of 'Sensate'?
Only thing that completely switches me off.

Ability chart

It also currently has 20% off if you have a chronic illness.

Start low though!!! Not at the 30 mins at lrvel 20 or whatever.

l do 2 mins at levrl 2. Don’t over stimulate.

@ArseInTheCoOpWindow if you take it early in the day sleep isn't impacted.

Thank you, I will hold onto that. I hope you recover to that extent again 🙏 x

@stayathomegardener no I don't know sensate. What's that?

It's a kind of pebble one wears around the neck that vibrates into the sternum whilst the app plays bird song, wind chimes or similar.

I'm quite a hyper person and it's the closest I can get to meditating.
If mine broke I would 100% replace it.

Hi just seen this post. Don't want to lose it as I'm 43 ME diagnosed when 11ys old. Need sleep now but will read properly tomorrow x

Interesting. Thanks.

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