Working with ME: Hello, I have not had... - Myalgic Encephalo...

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Working with ME

Maddie21
Maddie21

Hello,

I have not had an actual diagnosis but I do think that it is a strong possibility that I have ME.

Can anyone tell me any tips as to how to work with ME?

I am currently working, entirely shattered and wiped out. I have no energy, taking a large amount of painkillers throughout the day and my doctor won't give me any stronger ones. The ones I currently take only take the edge of and I feel like I am getting worse.

I welcome any advice :)

7 Replies
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Hi Maddie21,

I'm so sorry for your pain and exhaustion, I know exactly how you feel. I work 5 hours a day in a school kitchen and feel like I'm literally dragging myself through the day sometimes. Some days the muscular pain in my arms and legs are the worst, some days I feel like there's an axe in my head, this is on top of feeling completely wiped out. I come home and sleep or at least rest by laying down whenever I'm not working. I literally feel like that's all I do at the moment. After seeing numerous GPs at my surgery (because you never see the same one twice) and having lots of tests (results all normal) and being told there's nothing wrong with me, I'm finally being referred to an ME clinic. There isn't one in my area though, so apparently the clinic has to apply to my local CCG for funding to accept me as a patient, then if that's approved there's a wait of up to 13 weeks for an initial assessment. Once I get there will they even help though as the current NICE guidelines still recommend Graded Exercise Therapy and Cognitive behavioural therapy as treatment. My family have pushed for me to book an appointment with a private consultant for an assessment to at least talk to someone who knows what they're talking about and hopefully be pointed in the right direction as to where to go from here. It's so hard being stuck in limbo and not getting help and feeling like your life is on hold. It's hard but you have to keep going to your GPs and pushing for help, especially for help with the pain. Good luck x

Maddie21
Maddie21
in reply to Katycat

Thank you for your reply it was really helpful. Best of luck with everything x

Hi Maddie

The best place to go for information is the website for “Action for M.E.” they have everything covered from being newly diagnosed, working, advice for your employer as well as yourself.

However I would also advise you to see your GP, get a referral to someone who can take your condition seriously such as a rheumatologist.

M.E. is often diagnosed by exclusion, that is when every test comes back normal. It can take quite a few weeks to get all those tests done, but it is so worth it. I really hope you don’t have M.E., and that you have something that is treatable. However, if you do, then there is a lot of support out there.

M.E. is recognised under the equality act 2010 as a disability, your employer has to take this seriously and provide reasonable adjustments. Your union rep and occupational health department are also key, but obviously this is easier if you have a firm diagnosis.

I wish you all the best.

hi, in terms of getting through the day in the meanwhile, a tip that may help that helps me is use every aid you possibly can. stools where you might have to stand, not exerting myself trying to lift or open things etc. im sorry this may be teaching you to suck eggs, but i realised that even reaching too far across my desk was causing me extra problems, and once i realised all the tiny little things that i was doing like this and put them together, i realised they collectively were sapping a lot of energy from me. its been tough to adjust to what is 'too much' now for my energy left, but now I've made seemingly tiny adjustments, they have helped me keep going a little longer at work, and i feel better for longer too. the 'spoons' idea helped me get my head around it too.

hope this helps!

all the best with your referral x

Maddie21
Maddie21
in reply to Kazandoz

Thank you :) I need to learn sometimes that I'm not a superhero haha

Kazandoz
Kazandoz
in reply to Maddie21

yes... i had to put my cape away too 😁 x

Maddie21 At one point I only survived work by very careful energy management. Resting every evening and all weekend, and at lunch time in the summer I would lay on the grass in the park and in winter sit in the library. My life was rest or work. I hope you don't have a diagnosis of ME as once you have that label every time you go to the doctor for any problem you will be told it is due to ME.

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