Diagnosed with ME and have no idea what to do now

lollyred1

i was diagnosed with ME 4 weeks ago and have been signed off work for longer than that im really starting to panic as my symptoms are the worst they have ever been with me not even able to walk down stairs with my son we have to now come down on our bums which he finds great. My problem comes down to money if i stay off sick i will not be able to afford to live but health wise i am unable to carry on in the job im doing as it involves alot of personal care for clients with learning disability, there is also the factor if anything happened aggression wise i have not got the strength to sort it out. Would i be entitled to anything to help us through this period??

Leopardlady

Hi lollyred1

I had ME for over 10 years, with 4 years of no walking or working, lucky for me i was living with my parents at the time, however there are lots of benefits available to you. Please have a look at this site: http://www.direct.gov.uk/en/Dl1/Directories/DG_10011169

You are entitled to disability living allowance, and should be able to get some more help.

If you want to chat about it, please PM me and i will give you a call, whereabouts in the country are you?
Keep positive, at least your son is enjoying what he sees as fun, you will need this level of postivity to help you through the bad days.

Keep smiling and big (((((hugs))))))

BlondeHeadOn

There are support groups and organisations out there which can be a big help - links below to some of them:

http://www.meassociation.org.uk/component/option,com_frontpage/Itemid,1/

http://www.supportme.co.uk/support.htm

http://www.afme.org.uk/supportgroups.asp

http://www.meresearch.org.uk/socialcare/groups.html

... to include just a few! There is loads of help and support out there if you want to tap into it - these websites are really helpful.

Good luck, and all best wishes - you will get through it.

:grouphug:

MrsTinks

I had/have ME too many years ago - post viral ME. It knocked me for six and was only really picked up when I nearly fell asleep whilst driving! And that was after a full nights sleep. My GB "grounded" me and ran every test under the sun. Eventually I recovered enough to go back to work but not everyone does. I still get bouts of extreem exhaustion from doing frankly nothing... but they are rare and getting longer between them.

Do a google for ME - I know there are support groups out there for it

Leopardlady

Just a quick addition, i have recovered fully and lead an active and healthy life now, so there is hope, no matter how bad it gets, most people do recover from ME, there are just times when you need to listen to your body! This was the hardest thing for me to do, but helped so much in the recovery.

Take care

Mojisola

There's a lot of free advice on Dr Myhill's website -
https://www.drmyhill.co.uk/articleresults.cfm

It's worth working your way through her online book -
https://www.drmyhill.co.uk/cfs_book.pdf

I would suggest that you need to get as much help as you can soon to look at benefits. No-one gets better from ME quickly - you will have to start making changes to your life to allow your body enough time to rest. The more you push yourself to keep doing things, the worse you will get.

Most areas have a local group and it can be reassuring to make contact with people who have had ME and hear about their coping mechanisms.

Savvy_Sue

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Paparika

Good luck with this, i'm still being investigated,
so many tests and most come back normal.

Although recently had 12 MRI scans my eyes and neck are ok but again as per normal my brain isn't and i need to wait until the consultant has a meeting to work out what is wrong.

I'm stuck in one health authority that make diagnosis based on symptoms and the other that have ran lots of tests but are not sure.

All i get told is there is something wrong, they just don't know just yet.

Get on to DLA you should be entitled to extra money to help you, keep fighting

Dinah93

Hi Lollyred1.

You will find a lot of the support groups great, but because there is no definitive test for ME, it's more a 'well we ruled everything else out so it must be M.E' the benefits system is very, very hit and miss. I developed M.E. when I was 17, after managing such amazing feats as falling asleep in a club on my best friend's 18th, being unable to open the oven door or lids, my book being too heavy to lift, and the usual sleeping 22 hours a day or more and so on. Despite being unable to get to the bathroom on my own, let alone cook myself a meal I was deemed not eligable for any kind of benefits and had to move back in with my parents. However some people with much milder forms are granted full disability, it really is very hit and miss.

To get back on the road to recovery I tried quite a lot of things, I have heard wonders about hyperbaric oxygen therapy, however due to narrow ear canals I found it far too painful to continue with. The best thing I did for me was I took on a completely wheat and gluten free diet. This didn't make me back to normal, but I was able to work part time and could stand up long enough to take a shower. It really isn't easy to follow, especially if you eat out, but supermarkets are great now and you can get gluten free pasta's, breads, sauces etc. For me I could really feel the difference, and if I had any gluten at all (ie if flour had been used as a thickener in a sauce) I could feel it immediately. I did this for just over 2 years, at which point I gradually started using more 'normal' versions of things, and found I could handle them. It was a bit like my body needed to completely detox of all the processed rubbish to get back up to speed. I found I couldn't just cut back for it to work, I had to cut it out entirely, but the results within just a few weeks really were amazing.

Best wishes to you, I know how hard it is and I can't imagine how much harder it is trying to be there for your little one too. It does get better, but it usually does take a while. It is now nearly 7 years since my diagnosis, and I now am about 95% back to my old self. I still have poor concentration and 'crawling' skin sometimes, but I have been able to work full time again for the past 3 years, and was part time for 2 years before that. I began working again 2 months after my diet change, and I really can't express strongly enough how it turned my life back around again.

D x

santashelper_2

One thing I have always wondered is what is the difference between ME, Chronic Fatigue Syndrome and Burnout or are they are the same and is it from overwork that causes these issues or is there other causes.

Dinah93

santashelper wrote: »

One thing I have always wondered is what is the difference between ME, Chronic Fatigue Syndrome and Burnout or are they are the same and is it from overwork that causes these issues or is there other causes.

CFS and ME are frequently used as interchangable terms, although in medical circles CFS is generally used to refer to shorter lasting or milder forms than ME. Burnout is not a medical term as such, and is more akin to exhaustion or stress related types of mini-breakdowns, but there is usually much more of a stress element than ME, which can hit the happiest, least stressed, most balanced people there are. ME/CFS isn't more prevalent amonst the high fliers and career types than it is amongst students, single parents, retired people and even children.