How to explain M.E./C.F.S.

With all the wealth of information available, I would have thought your daughter would educate herself.

It's fibromyalgia with my DD but she gets similar reactions and "advice".

So sorry to hear that your own daughter cannot understand what you are experiencing. No idea how you can get her to see. It must make it even harder for you. I wonder if there is any literature available that you can print out with a list of the symptoms highlighted in basic clear terms?

Am sorry that you have a DD with so little sympathy or understanding annep
If I were you I would be doing very much less for her in the future.Put your health first.
Like mcem I have a DD with fibromyalgia (and another DD with M.E.) but these conditions are well known about not rare, so everyone should realise how debilitating they
are.

Good point MissAdventure. Would be easy to research.
I've thought of printing or sharing online information* Lollin* but I would have to be careful how I do it for fear of offending.
Lemongrove thank you for your sympathy but I don't see her very often. I am visiting. Perhaps if she saw me more she would understand
although I think many people including some doctors are still sceptical.
I empathise with your daughter *
mcem
Thanks everyone. It helped just to tell you.
must rest now.

I suffer from tiredness and next day exhaution but i dont have a mame for it but you have my sympathy. Its horrid being so exhausted. Im in bed now from 8 pm most nights

Sleep well, annp
Sweet dreams.

I have sent you a PM

I think the invisibility of the illness plays a part annep, also children often just don’t want to acknowledge there is anything wrong with a parent. My family understand - finally, it’s taken time - outside world can still be unhelpfully ignorant. I’m sorry you have the added pressure, it’s not helpful. Be calm and clear, go to bed when you need to and try not to let her upset you. I know that’s hard, I’ve been in tears sometimes, hope you can sleep well and be able to play with your grandchildren tomorrow.

Dear Annep I am so sorry that you having those difficulties and hope that your daughter will be able to understand what your life is like very soon. If you do a search on "The spoon Theory" I think you will find that to be a very helpful tool. Although it is written by an American girl who suffers from Lupus it very much reflects the realities of living with ME, CFS, Fibromyalgia or similar. People with limited energies have become known as 'spoonies'.

Thank you Cornergran. I did actually sleep very well. I try to be calm. I love my daughter but I do wish she would treat me better. She's a bit overbearing generally. (I think that's the right word). Thankfully I go home tomorrow. It's sad really. I will look at the spoon theory Synonymous. Thank you.
Have a nice Sunday everyone. I am making some Christmas tree decorations with the boys ?

and thank you for the advice cornergran. I hope this is a good day. I'm glad your family understand now. Makes it easier.

and MissAdventure thank you too. I'm amazed how well I slept. Everyone else was awake from 5 am as seagulls were being very noisy. I didn't hear a thing. So unusual for me!?
Ethelbags perhaps check with doctor?

I believe you annep .... I have it too, and was severely affected for the first 2 years, being totally bedridden, unable to bear light or even the radio on. Still not well 30 years later but much better than back then.

I am so sorry that your own daughter has no compassion or understanding.

Well I would never have guessed when we met Sparklefizz, which proves a point. That must have been a really difficult time for you. I haven't been that bad. But I have spent long periods just sitting and getting up to make tea/ snacks.
The important thing imo is to stay positive, not always easy.
I'm glad you're a bit better. Thankfully we do sometimes improve.

On the news this morning some research was reported that suggested that ME/CFS are caused by an over sensitive immune system over reacting to viral infections www.bbc.co.uk/news/health-46570494

I get sometimes get Post Viral Syndrome, a similar problem when I get any viral infection. I know I have an over sensitive immune system as I have had allergic reactions, mainly to medications and many skin creams since childhood.

One of my cousins has had ME for about 50 years, at times she has been in a wheel chair.

When will the derogatory attitudes go away? When will sufferers shake off the "yuppy flu" label. It is bad enough feeling so awful without all this rubbish.

You have all my sympathy.

I have had ME for 30 years, severely for the first 5+ years in that I was bedridden for 2 years and then could hardly leave the house for a few more years, and sometimes used a wheelchair. But then I was a passenger in a car accident and had to wear a medical collar on my neck, and suddenly I was "visibly unwell" and people's attitudes towards me changed.

I am better than I was but still have to go back to bed during the day most days, still get random pain and many other ME symptoms. I am still trying to get myself well after 3 decades.

There are many invisible illnesses like ME. We never know what someone else might be going through. People thought my friend's husband was drunk when he had the beginnings of MS, and he would get rude comments from strangers. Life ... and people ... can be cruel and judgmental.

Sparklefizz You have all my sympathy, I have seen how my cousin has struggled all these years and I always worry when I have PVS, in case it becomes ME

Thank you MOnica. Yes, take very good care of yourself when you are feeling poorly.

Thank you Luckygirl. My daughter did actually apologise before I left for being insensitive. Monica I'm pretty sure lots of things are linked to the autoimmune system. I have psoriasis and some arthritis ( not a problem really mild). My daughter has it, again only mild at the minute but her consultant did tests and said it was related to her autoimmune system. MS and lupus are the same. Apparently if you have a virus and don't rest during recovery you can take M.E. I know someone who had flu whilst climbing in Spain and he is now in a wheelchair. Perhaps they are beginning to make progress with research.
Sparklefizz so true about visible illness. I know how you must feel having to cope. Sending you flowers

Thank you, annep - how lovely!
And to you too, and to anyone feeling ill today. xx

I think the 'invisibility' is an issue, but also the fact that some of us can function quite well some of the time and so appear 'normal'.

For most of us, I think it's hard to convey to others just how harshly the payback affects us and can last for days after, what for others, is just a small amount of exertion.

It's SUCH a frustrating condition!

This is in today's DM:

www.dailymail.co.uk/news/article-6502357/Chronic-fatigue-condition-caused-active-immune-study-claims.html

There's a short video to watch (4 minutes ). Interestingly, the doctor in the video has ME - so it must be real!!!