Hello everyone

I'm new here & keen to know as much as I can about what has helped you get as well as you can.

I was diagnosed with ME 2 years ago in Cornwall after 6 months of GP appointments & multiple tests. I attended 7 x 3 hour self help training on managing life with ME in a group setting.

Although I am a lot better than I was, I am only just realising how disabled I am if that makes sense.

my struggle at the moment is trying to have a social life of some sort without 'overdoing' my energy capacity & I wondered how many of you have joined an ME supportt/social group & if you find it helpful?

6 Replies

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  • Hello and Welcome, Dee81.

    I have a working diagnosis of M.E and have been dealing with the symptoms for over 2 years.

    As you will no doubt have realised, there are no proven treatments for M.E and as yet, there is no cure.

    There is also very little understanding of the condition among most healthcare professionals, which means that we sufferers are largely left to our own devices.

    I am by no means an expert on the subject. However, having done some reading, I can recommend a book titled '150 Tips for Everyday Living With CFS/ME', which is available through Amazon.

    As far as specific advice goes, it would help to know a little more about you (such as whether you live alone, whether you are able to work etc).

  • Thankyou Becky 1712 - I manage light housework, cooking & very gentle work outdoors, gardening but tend to do the 'boom & bust' thing & am exhausted by lunchtime, spend all afternoon 'at rest' & have to fight to get up again late afternoon.

    I do a little office work for my partner's home internet business but my brain doesn't work very well since ME & It takes me ages to do small jobs.

    I can't walk outdoors much whereas I walk well on a flat surface but no more than a slow 30 minutes or I get all the CFS symptoms & inflammation, sinus & sleep problems.

    Am so tired of being so housebound, I worked full time, enjoyed long walks & horse riding before being ill.

    I have no thyroid gland so take thyroxine daily to keep well. I had radioactive iodine treatment back in 1997 that killed my thyroid.

    I had a severe throat infection several years ago & it was discovered I had an enlarged liver. I improved my blood tests by good diet but after the shock of an unexpected death in the family In 2013 fell ill with CFS/ME.

  • Hello again, Dee81. My apologies for not getting back to you sooner.

    I can identify with a lot of what you have written in your posts and I can recommend another book titled 'Fighting Fatigue; A Practical Guide to Managing the Symptoms of CFS/M.E' (again, available through Amazon).

    I realise that reading can be difficult when you have M.E and the beauty of these books is that the chapters are short, so they can easily be picked up and put down again.

    I have found an e-reader particularly useful (I own a Kindle) because it has various functions that make it very user friendly for someone with M.E. For example, a highlighter function and text to speech software.

    I also struggle to walk over distances outdoors and have had to buy a wheelchair to help me get around (though I use two sticks for shorter journeys).

    It may be worth asking your GP to refer you to Occupational Therapy for an assessment of your needs because they can provide you with various aids to help around the Home.

  • Hi Becky1712 - Thank you for your advice, my partner bought me a kindle for Christmas & I am slowly starting to read again. I had a recent Thyroid blood test & will ask my GP for more ME tests (my ME NHS Cornwall trainers advised I ask for a full blood test every 12 months) soon.

    My biggest problem (perhaps cured recently) was believing that I might be well again if I feel well - I always blow these few good spells by overdoing & I am nearly always overdoing for someone else instead of pacing myself.

    Seems a good advice book together with a diary might help my self discipline.

    On the bright side, I have met people who say they suffered CFS for many years then were healed so I like to think about that. Its such a waste of time lying down so much & I worry about my bone health.

    Do you keep a diary of day to day exertion / diet / rest etc?

    Best Wishes - Dee81

  • Thank you for your kind wishes, Dee81.

    I don't keep a diary as such but I do own a fitness tracker and it records my daily steps, calories burned, distance covered, sleep duration/quality etc.

    At present, my Husband is my carer and he has to help me wash and dress, manage medication and also deals with the majority of the cooking, cleaning, childcare and financial decisions.

    I am hoping to get a Home Helper soon, so that my Husband can have more time to himself without the added stress of wondering whether I am managing without him.

  • Using heart rate monitoring in an attempt at avoiding the boom and bust energy cycle. With general consensus in our support group setting a max heart rate at whatever does not give post exertional malaise in the 24-36 hour time slot after operating at the limit rather than using the 220 minus age recommended for the fit and well which no longer applies sadly.

    Starting at around a 100 beats per min and adjusting from there as body gives fluctuating feedback ( I can top 100 from standing up so walk slower than I did pre monitoring) with rest breaks that get the heart rate down before I have completely overdone having a life.

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