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?

@ChronicallyMEAgain hope this chat has been less advice and more positive suggestions.
Thanks for starting the thread x

I've ordered it!

How's everyone doing today? I'm going to try and rest and just watch some tv. The buzzing is driving me mad. Got the odd nerve twitch to go with it. Mind is racing a lot too. Think that might be peri though.

Hey. It's good to find my people. I'm having a severe relapse after 18 years of slowing crawling and painstakingly improving to a fairly mild and agreeable life. When I first got diagnosed, I had to learn to walk again and couldn't make sentence so I try to be positive and always see how far I've come. But it's brutal, isn't it.

Health privilege from others is my worst element, as I can adjust my expectations but struggle when others breezily burn through my energy without a second thought and then canter off to do the same to someone else the next day. Envy and frustration and bitterness are my constant nemesis, I try to accept my limitations but I can't accept those harmful feelings in my life!

I've been working and built it up into a fair echo of the career I once had - but blew it all in the last six months having been sold a dud with 'promotion' of sorts (which in reality has been hell) and I don't know how long (if at all) it'll be before I have a life again. Patience and healing but also LOTS of feelings to work through.

Anyone interested in Dr Sarah Myhill should read this:
https://www.bbc.co.uk/news/uk-wales-64457153

It is totally shit isn’t it.

I have been struggling for about 3 years now. I used to be full of energy, now I have to drag myself out of bed to do the housework or wfh. I get about 2 hours of energy on a very good day, then it’s like a switch flicked and bam.

Frustrating. There are so many things I want to do. I can’t even go to the shop ffs. All the while I spend my life watching people walk past my house living their lives and I am just watching mine waste away.

Has everyone has their active B12 and folate checked? This can only be tested privately in the UK as the NHS only test ‘serum’ B12/folate.

This has been a game changer for me after years of chronic episodes of exhaustion that can go on for months at a time, with me spending as much time as possible resting.

It turned out that I had chronic low active B12, which is the B12 that your body actually uses, rather than serum, which includes a lot of bio-unavailable B12 (that your body can’t absorb).

After reading about it and stopping supplements for a few months to ensure my levels were my own, I tested and realised I was very low. This explained the terrible fatigue, nerve pain, anxiety, pins and needles, breathlessness and insomnia. I’ve been building my levels back up for a couple of years and it’s made SUCH a difference to my life.

I did private testing via a private naturopath doctor - worth every penny.

Acceptance was the key for me.

I had years of fighting it, pushing through and completely fucking myself to keep other people happy. I was so scared of being seen as lazy. I spent years hoping for a cure, and wasted god knows how much on snake oil treatments.

Once I accepted that this is how I am, and probably this is how I’ll always be, it changed my life. I make the most of the good days, and don’t beat myself up on the bad days. If I have to stay in bed all day I do it without guilt. If I’m too tired or in too much pain to accept an invitation I just say “No thank you, I’m not up to it”.

I should also mention (I received my ME diagnosis over 30 years ago) that I have had times where I’ve been able to work full-time (albeit with completely resting at the weekends), and others where I’ve been bedridden for 6 month stretches. Don’t think, when you’re at your lowest, that it will always be this bad.

My best friend has lived with ME for over 30 years. I hate watching the life that she has to live. I took her out for the "day" yesterday. We were out for 4 hours. I had to hold her hand to steady her up and down stairs. I sat down for so long whilst out.

She had a great "day". She won't be going out for the next 3 days as she needs to recover.

She's mid 40s. It's heartbreaking.

She copes by measuring her day into chunks. She allows herself regular rest chunks. And doesn't feel guilty about it. She lets herself have "days" out like yesterday, knowing it's going to knock her out for days after. She wants to enjoy life, even for the brief moments that her health allow.

Wishing you the best.

I’m up to level 5 for 5 minutes,

Brain much clearer. Less tired. Less wobbly.

That's great to hear.

@SorenLorensonsInvisibleFriend that sounds really really tough. I am very cautious about 'promotion' or anything that changes the status quo at work which is not easy as it can be beyond my control. There's a woman I follow on linkedin who talks about chronic illness and the impact on careers. I haven't delved much into her resources but found it chimed with me. I find reconciling ambitions at work with reality very hard.

@Anonym00se I'm responding in chunks here so I'll come back to you. ...look at me... pacing! 😆

Yes, that's the reality and I imagine your friend is 'mild' like I am.

Glad she has you though. It's hard keeping friendships. I am watching mine fade and it's sad. People like doing stuff. I became the pop in for coffee friend rather than anything else but because I still have to work, I can't manage anything social around work so realistically I can only be sociable on a weekend when I'm doing ok. As my friends seem to be planners and do-ers with much better offers, I find myself alone.

I have text and phone call friends now mainly. I only see actual people at work...and I don't like most of them!

@ChronicallyMEAgain I must have brain fog .. I thought I started this one. Just realised I didn't. So sorry for being a bossy boots and taking it over today 🙈

Hope you are ok.