M. E. Awareness week -do you know anyone affected by ME?

[gotmychocolateimgood]

ME is a serious physical illness affecting people of all ages and backgrounds, but mostly women.
It is poorly understood by the medical community and there is no known cure or treatment.
Symptoms include overwhelming and debilitating fatigue (imagine your worst hangover ever combined with running a marathon), muscle and joint pain, headaches, sensitivity to light and sound, cognitive impairment and digestive problems, amongst many others.
Some liken the feeling to a phone having a faulty battery which won't charge, even when plugged in (you sleep for 14 hours but feel worse when waking).
If someone you know has ME, please believe them. It's a horrific illness, which takes people's careers, relationships, passions and social lives as well as their health. Perhaps during ME awareness week you could show extra kindness to that person who is suffering. Thank you

My daughter has ME, she became very unwell with it when she was 7. She's 14 now and while still not completely recovered she has come a really long way. It was a long, hard road but she is now finally able to attend school full time and is doing great.

Love to see this post written, the amount of people who either don't know about it or, worse, don't believe it's a thing is staggering.

My son has ME which he got after glandular fever when he was 14. I honestly initially thought he had a brain tumour because the change in him was so dramatic - he went from an active, busy child to one who was in bed 24hrs a day for months.

It's been a long, hard, horrible journey but he's 21 now and at uni - for the most part, he's a lot better but he definitely still needs to rest more than his friends and a really late night completely takes it out of him. He's aware of the signs which indicate he's close to a relapse so when they happen, he will take himself to bed and, touch wood, he seems to have it under control.

My heart goes out to people, and parents of children, who have ME. It's a horrible illness.

My ds was the youngest dc diagnosed in the North East at 2.. At 15 its tough. Not helped by school not supporting him /us at all..
Was once called lazy and had detention for falling asleep in class.

Frequent calls from school when he is off even when it's a teacher who has sent him home.
Hard trying to be a teen with ME...

Thank you all for sharing your experiences. I was diagnosed a few months ago but have been unwell for some time. Still adapting and learning how to cope with it and listen to what my body needs. We are also adapting as a family. My children are primary age and have some understanding. Luckily I wasn't severely ill during the baby and toddler stages although looking back, there have been warning signs for years.

I really miss my work and hope to return to it in the future. Being at home so much is lonely and isolating. But I've been really fortunate to have been treated well by my doctor, to have been believed and to have amazing support from my husband and family.

Seeing your child suffer with this illness must be heartbreaking. I really feel for those of you with children with ME. They miss out on so much at a crucial point in their lives.

Thanks for posting this. I too have ME and my life has shrunk to a fraction of what it was.

My plea would be to please keep in touch with any friends who have ME. It’s a really isolating illness - you can’t go out, you don’t see people at work, you don’t bump into them in the street. You can keep in touch with someone by dropping them a message, sending them a card, going and visiting if they’re up to it. Send them a photo of a place that you think they’ll like - be their window on the world. Make them feel like they still belong and are valued by their friends.

Thinking nice warm thoughts about them is a really ineffective way of helping. Up your game and get in touch. Your support will be so much more effective.

I have ME, along with Fibromyalgia, Myasthenia Gravis and Bergers Disease. I have gone from a healthy 34 year old who modelled to someone who lives in a wheelchair or the bed 24/7, unable to even care for my own 2 children alone. ME is an absolute bastard of a condition and I so wish more was done to help. It has taken my whole life away from me in the matter of a year and even now I am struggling to stay awake long enough to type.

I agree that reaching out to friends with ME is really important and so appreciated. Just pinging a text 'thinking about you, hope you're feeling a bit better today' or tagging them in something they like. My friend left some daffodils and a trashy magazine on my doorstep a couple of weeks ago. It meant the world to me because even though she was busy, I wasn't forgotten.