Cfs & life!!!

Cotton_wool_katie

Hello everyone and thanks for taking time to read and maybe respond to the post.

I have recently been diagnosed with Chronic Fatigue Syndrome or ME and vertigo.
At the moment work are not being very sympathetic and i believe they think i am making my symptoms up. I have an employment review meeting next week and am quite worried about the outcome.

I have 2 small children and my husband has epilepsy which is not being controlled well at the moment.

My symptoms are getting worse at the moment i only work part time but am finding it extremley difficult to work more than 2 shifts in a row.
I have constant neck and back pain and tiredness.

I am unsure if i can or would be able to get any disability payments and cant really see a way forward, any advice would be gratefully recieved.

xxx

johnwayne

Hi
So sorry you are not well. I have Fibromyalgia which is in a lot of ways similar to CFS. I also have vertigo & it is an awful thing!

Perhaps you might be able to look into something called ESA (which i think is the new name for incapacity benefit) & possibly DLA which by reading lots about it is quite hard to get.

It would be a good idea to go to your local Citizens advice bureau

I'm sorry I dont have many answers but I am sure a more knowledgeable person will be on here soon

claroc

hello cotton, so sorry to here about your problems please try not to worry i know a lady with small child who has ME she has a personal budget which means she can choose how to spend her care money (so sorry you will need help) she also has housing benifit etc. good luck claroc

Cotton_wool_katie

Thanks john wayne and claroc i really appriciate you taking your time to reply, at least there are people on here who dont judge amny thanks x

magsiebee

Hi Cotton Wool Katie,

I've got ME/CFS too and I understand what you're going through. It's controllable now...Hurrah! So there is hope and a light at the end of the tunnel. Get some of those heat pads from the £ shops for your back and neck pain, they work wonders.

Here's a link that you might find to be helpful.

http://www.meassociation.org.uk

Please PM me if you would like some more help and advice. X

Mojisola

magsiebee wrote: »

I've got ME/CFS too and I understand what you're going through. It's controllable now...Hurrah!

What do you find controls your symptoms, other than the heat pads?

Katie - you might be at the start of quite a long haul so you need to look after yourself. The more you overdo it in the early stages, the longer you will be ill. Don't underestimate the illness because others are not taking it seriously.

Dr Myhill has put her protocol on the web for free here - https://www.drmyhill.co.uk/article.cfm?id=362 - and it's worth working your way through it. The supplements cost but there's lots of advice you can follow for free.

You may have a local group who will give you support and ideas about managing your health. Try googling ME/CFS and your area. The national societies - the MEA and Action for ME (https://www.afme.org.uk/) - are good sources of info. They both do leaflets about claiming benefits.

I really feel for you. Sending you best wishes and support.

jazabelle

magsiebee wrote: »

Hi Cotton Wool Katie,

I've got ME/CFS too and I understand what you're going through. It's controllable now...Hurrah! So there is hope and a light at the end of the tunnel. Get some of those heat pads from the £ shops for your back and neck pain, they work wonders.

Here's a link that you might find to be helpful.

http://www.meassociation.org.uk

Please PM me if you would like some more help and advice. X

In what way is it controllable? Just because you have found a way to ease your symptoms, doesn't mean everyone else will, surely?

magsiebee

There's no need to be nasty!

I wasn't implying for one moment that heat pads are the answer to control ME or that they will work for everyone! I was merely suggesting a cheap and easily available method of pain relief for her symptoms that are identical to mine and quite honestly anything is worth a try when you're in pain! I have other information that other ME sufferers recommended to me that I would like to share with the op if she chooses to contact me. I was only trying to offer her some encouragement too seeing as my illness is under control now and I have been through what she is experiencing now.

I didn't expect to be ripped apart for posting!

What is the matter with some people on here? We're all supposed to be helping each other aren't we?

I won't be posting on here ever again.

mardatha

I second what Mojisola says - there's no quick fix and happy ever after with ME. I spent 1 year trying to keep working & 2 years fighting to get better and get back to work - and I can see now that was the worst thing possible, because it just made everything worse. Nobody I know with ME works more than a few hours part time. I feel for you pet, because its a real PITA.

willa

Cotton_wool_katie wrote: »

Hello everyone and thanks for taking time to read and maybe respond to the post.

I have recently been diagnosed with Chronic Fatigue Syndrome or ME and vertigo.
At the moment work are not being very sympathetic and i believe they think i am making my symptoms up. I have an employment review meeting next week and am quite worried about the outcome.

I have 2 small children and my husband has epilepsy which is not being controlled well at the moment.

My symptoms are getting worse at the moment i only work part time but am finding it extremley difficult to work more than 2 shifts in a row.
I have constant neck and back pain and tiredness.

I am unsure if i can or would be able to get any disability payments and cant really see a way forward, any advice would be gratefully recieved.

xxx

Katie, sadly a lot of doctors still do not believe in M.E./CFS. Even though the World Health Organisation defines it as a neurological disease and research (in America) is now firmly pointing to a specific viral origin. The medical profession
here has not got its story straight on M.E. yet!
How rubbish that you have a diagnosis but have to face the attitude at work, been there myself.
The first step with benefits would be incapacity benefit.
If you are interested in reading more about symptoms of M.E. and much more, I have found this is a good site (I've only dipped in myself, there's quite a lot there, but it can help for confirmation of this very real and debilitating physical illness when you're not believed etc):

http://www.ahummingbirdsguide.com/

Edit: Sorry Katie, I read your post missing where you said you had a diagnosis at first. Hence all the stuff above about docs because I know it's not always easy for people to get a diagnosis. I've left it in cos it's true! If the med profession is not convinced, that might be part of the reason why we get so much disbelief from other people!

mardatha

I'm quite lucky with my gp, in that they dont disbelieve me. They sit back, fold their arms, and say "there is nothing we can do for you, we just don't know enough about ME yet". But this is a very rural area with a small scattered population, and quite a few people in the practice have it...so there must be a huge amount of sufferers nationwide. I don't want to get into how soul destroying it is cos I'll just get meself depressed...but you will need to use all of your mental strength to fight this. Stay positive and stay fighting !