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ME - can anyone explain?

(5 Posts)
chickettychick Tue 28-Jun-16 23:50:11

A family member has ME. I don't really understand what it is (one of those overlooked illnesses), or how it really effects people. The family member seems to be really struggling at the moment, and I've noticed others have just thought they're being lazy etc etc.
So what exactly is it and if anyone here has it, how does it effect you? What could your family do or what do they do that helps you cope with it?
(I don't know how this post comes across but I just would like to be able to sympathise with and help this family member through this).

Costacoffeeplease Wed 29-Jun-16 00:00:28

I've had ME for 26 years. It is the most bone-achingly tired you can ever imagine, everything hurts, light hurts your eyes, it hurts to blink, your brain is like cotton wool, you can't concentrate to read or even watch tv - I used to know when I was on a downward trajectory when I kept turning the volume up on the tv and I still couldn't hear it - it was actually that my brain couldn't process the sounds

When I was first ill I used to sleep about 20 hours a day

I have never worked full time since

I am much better now, but still get relapses if I don't pace myself and nap in the afternoon

I hope this gives some idea of what it's like

Butterflyface Wed 29-Jun-16 00:04:48

It's very difficult to describe - but at my worst, no matter how hard I tried, the energy just would not flow through my body to get to my muscles, and getting out of bed was impossible. If you can imagine that every movement you make requires energy to get to the muscles to make them move, then without that, every muscle feels like it's hitting a brick wall - it just seizes up and refuses to contract or expand to enable movement.
This is not just in arms and legs, but I used to get blurred vision when I was tired, and my eyes wouldn't open, (or one would open and one would have to be closed,) tinnitus in my ears, shaking in my hands, feet, arms, legs, head, bowel and gynae spasms and 'freezes', affecting my ability to go to the loo, and of course, my period flow.
I would crawl up the stairs because I couldn't push myself to stand, and come down the stairs on my bum - sometimes I would avoid going to the loo for hours because it was upstairs and I was downstairs. I wouldn't wish it on my worst enemy.
Whether it's a mitochondrial dysfunction that arises from gut bacteria abnormalities, or an autoimmune condition, or a reactive condition to stress on the brain-blood barrier, no-one's really pinned it down yet I think. I found taking D-ribose, Acetyl L-carnitine, a general multi-vitamin, extra vitamin D, eating organic or as 'cleanly' as possible, all helped. I had a course of CBT, which I was skeptical of, but it did really help me cope with the present challenges I had at the time, and think in a more forward-looking way. Pacing can help but only when you take it very very very slowly, at the pace that the person with the condition thinks they can take.
My mum decided that tennis, swimming, and exercise at home was going to help me - it didn't, I just crashed majorly.
However, finding your baseline, and working up from that in tiny tiny increments may help. I.e. if bedbound, then start at sitting up for two minutes and do that for at least a fortnight. It's slow, and it's difficult, but I went from being a wheelchair user to having a full-time office job, without many adjustments. Having my husband and children was a life saver, as they were the ones who saw me the most, and they knew how ill I was, and that I wasn't faking it, as others in the family thought. Having someone believe the pain and fatigue you're in was the most supportive thing they did, as it truly stopped me from going bonkers. It was hard on them all, but we found ways around things, and eventually social services came in and helped for a few years, until I got better.

stareatthetvscreen Wed 29-Jun-16 00:10:57

the wikipedia page is quite good

AnnieOnnieMouse Wed 29-Jun-16 01:04:25

I've had ME for a few years.
It is absolutely essential that the sufferer rests and rest, and does not push themselves at all. Sitting down watching TV or chatting isn't resting, either. Resting is head down, feet up, eyes closed and silence for me.
I cannot watch tv or listen to music much, either, as the input is too overwhelming. I struggle to find words, I can't concentrate on a conversation very well, phonecalls are hellish, as they take SO much concentration. Background noise is a killer, and anything but the most gentle journey in a car is exhausting.
Physically, it feels like morning sickness, 'flu, the hangover from hell, and sunburn.
The sufferer will not be lazy - they will likely have previously have been a very active person.

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