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ME / CFS - any experience please?

Discussion in 'Health and wellbeing' started by kittenmittens, Mar 19, 2019.

  1. kittenmittens

    kittenmittens New commenter

    I'm off sick with this ghastly illness and have just found out my fixed term contract will not be renewed for September. Before becoming ill I had excellent feedback from SLT and the head. Head has cited budget issues for the reason but I explicitly asked (instigated a meeting myself) a few weeks ago if I would be kept on. I was told to put it out of my mind as there would definitely be a role for me long term. I'm not thinking straight due to fatigue and brain fog so am unsure what to make of this and what to do. I'm too unwell to walk my own children to school at the moment and spend most of my time asleep or lying down resting.
  2. 7eleven

    7eleven Senior commenter

    I don’t have any advice, but I’m sorry to hear how bad you feel. Have you tried finding an expert in the NHS via google, and asked to be referred to them?
  3. kittenmittens

    kittenmittens New commenter

    I've had a referral and since my first post have been diagnosed with ME. I'm being referred for cbt to find coping strategies and come to terms with the illness. There's no other treatment though. When I wake up in the morning after 12 hours' sleep my body is really stiff and sore. Hoping this isn't the end for teaching.
  4. ThereAreBunniesInMyHead

    ThereAreBunniesInMyHead Occasional commenter

    I have Chronic Fatigue, although its not caused by M.E., its caused by another genetic condition I have. Its a nightmare trying to stay in teaching. But I imagine it might be the same with any job. I struggle to wake up early, and regularly fall asleep whilst driving in my car to work, so I have to keep stopping and getting out to walk around, or get fresh air, or have a drink, or even a nap!

    I am so tired during the day, that there have been times when I have literally fallen asleep in front of a class of students, although luckily they were on the computers doing research and didn't realise!

    In order to survive, I have had to devise my own plan, because I fear that SLT at my school would not agree to it. In my free periods, I turn off the lights in my classroom, lock the door, and go to sleep on the floor behind my desk. I can't be seen by anyone looking in the window on the door. It doesn't bother anyone. I just know that I can't get through the week if I don't have at least a couple of naps like that across the 5 week days. I know SLT would probably have a fit if they knew thats what I was doing in my free periods but its either that, or I would end up having every other day off school!

    I also make sure I leave school at least twice a week about ten minutes after the bell goes, and drive straight home, and take a 40 minute nap before my kids get home from school / nursery. One day a week I pick my 5 year old from school at 4pm and we drive home and she knows that the routine is that she can sit next to me in bed and play on games on my phone for an hour whilst I nap next to her, until my husband comes home with our other daughter.

    I also nap for several hours in the day on both Saturday and Sunday.

    Even WITH all those things in place, I'm still struggling to get through each day / week / term. I am not sure how long I can keep it up for but I just can't afford to go part time until at least both my kids are in school and we are no longer paying for nursery fees.
  5. kittenmittens

    kittenmittens New commenter

    Thank you for replying. Unfortunately I'm not in a fit state to teach. Sensitivity to light and sound plus severe headaches mean I can't go near a classroom. I'm lying down a lot as my body protests if I move. The fatigue is so severe that it needs another word to describe it... I tried to watch a very familiar easy going film yesterday and was totally confused.

    I'm taking a year out next year to rest and hopefully recover. I miss my old life but don't even have the capacity to be bored as my brain is shot to pieces.
  6. grumbleweed

    grumbleweed Star commenter

    I feel your pain. I once read that ME is to tiredness what lightening us to a spark, and how true it is.
    In my day there was so many people who don't think it exists and would tell you to pull yourself together. I'd like to think things have moved on since then.
    I had to reduce to part time, having also had a year out. I've worked part time ever since, means my pension is pants but at least it's now well under control and I can enjoy life again.
    It took ages though, working out what makes it worse, what helps, how to avoid stress, relaxation, tai chi, meditation all helped me.
    I also found the ME association amazing.
    I hope you find a way through, but if you can afford to not work, I'd definitely consider it for a few months.
  7. rayondesoleil1976

    rayondesoleil1976 Occasional commenter

    Hello Kittenmittens,
    Have you been officially diagnosed with this illness? I hope you are under the care of a doctor and that they have thoroughly investigated all possible causes of your symptoms. I don't have CFS or ME but understand how debilitating fatigue can be - it is not just being a little tired and it can hit like a tonne of bricks out of nowhere.

    I think you might be covered under the Equality Act and could be entitled to a risk assessment and reasonable measures to help you stay at work. Have you seen an Occupational Therapist? They can work wonders to help you with your fatigue.

    Make sure you have had all avenues explored in terms of what is causing your fatigue. I also recommend getting in touch with a support group. These people can provide amazing support and advice.
  8. gbattain

    gbattain New commenter

    I also have ME and gave up teaching this summer. I feel so much better. Managed to get a 3 day a week ta job in a 16+ setting but the pay drop has been really big. For the sake of my family's financial health would love to go back to teaching but the way I was going I think if I'd carried on I would have made myself permanently ill. Your health is the most important thing and ME can worsen quickly - don't take that risk, no job is worth it. We may not be able to afford luxuries anymore but on my days off I can walk the kids to school and no longer spend half my weekends asleep. Kids would rather have you than things. Hope this post finds you improved and happier!
  9. miranda-s

    miranda-s Occasional commenter

    Even if you have been officially diagnosed with ME, it's a good idea to explore other causes for your symptoms. Several members of my family have been diagnosed with CFS/ME but have later found out that their symptoms were caused by other things which could be treated, e.g. my aunt was severely deficient in Vit B12 and Vit D which can cause these symptoms. Other people in my family have underactive thyroids, but were originally told they had CFS. If you haven't already, please push for as many tests and investigations as possible to make sure all possible causes have been ruled out. Having seen people close to me struggle for several years in some cases, when it turned out they could have been getting effective treatment, I'd hate for other people to go through this unnecessarily.
    On the other hand, my mum DOES definitely have CFS and finds that the food she eats makes an enormous difference to the brain fog - I can't remember exactly what is and isn't good, but I know she has to avoid brassicas (cauliflower, broccoli etc) and certain other things that you wouldn't expect to be bad for you. She also notices a positive difference when she includes oils like flax oil or hemp oil in her diet. There's lots of information online, if you can get someone to do some research for you.
  10. harlequin24

    harlequin24 New commenter

    Hello Kittenmittens,

    I'm so sorry to hear that you're suffering like this. ME/CFS is such an awful condition, made even worse by the judgement so commonly passed by those who have never experienced it.

    I can only share with you my own experience. I suffered from ME/CFS for nearly two years, following a viral infection caught in Sri Lanka. My major symptom was pain as the result of post-exertional malaise. I had terrible sensations of burning and nausea whenever I overdid it. Sometimes this might mean walking for 10 minutes, whilst other times I thought I was over it and ran to the summit of Snowdon. It never ended well.

    I have been symptom free for over 10 years now and only really think about my this part of my life when sharing with others going through the misery of ME. I can only say that there is an exit door; somewhere. It's so frustrating not to know where the exit door is and when you will find it. But find it you will. At some point this will be over.

    Listen to your body. ME is often the result of chronic stress followed by a viral infection. Take time to heal. Try not to worry about work. When recovered, you can reinvent yourself and start to earn again. I held a high-profile position in teaching when diagnosed with ME and hold a completely different position in teaching over a decade later. With hindsight, I wouldn't have had it a different way. But none of this really matters until your health is returned. Take time to rest, recover, and heal.

    All will be well, and all will be well, and all manner of things will be well.

    I wish you all the very best with your recovery. It will happen, but only in its own time if my experience is anything to go by.

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