Managing your illness
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Managing your illness

From InterAction 108, published Autumn 2021

It can often be difficult to remain optimistic when you are living with the debilitating effects of M.E. but many people do find ways of effectively managing their illness. In response to your feedback, we asked three readers to tell us what has worked for them.

David's Story

David* discovered gradual and gentle movement provided a route back to employment.

42-years-old recovering from a bad attack of glandular fever and quite suddenly I am ‘poleaxed’. Fatigue like I had never known, muscle and joint pain, headache, tinnitus, loss of smell, muscle spasms, muscle weakness, brain fog and more.

All very confusing, what is it and what do I do? The first question is answered, M.E./CFS but the second? Bed-bound, I receive homeopathy, herbs, spiritual healing, diets and, of course, two failed attempts of graded exercise therapy (GET). Two years later and still bed bound for 24 hours a day, recently put on anti-depressants, what now?

As an in-patient I was helped to frame a pattern of exercise. Every hour I did something, like walking; initially for ten yards, which was my task on the designated hours. On other designated hours, it was arm exercises or trying to read. Initially one line of The Sun. After six weeks, I was into a rhythm. Seven o’clock dress and breakfast, eight o’clock go for a walk, nine o’clock arm exercises and so on. This rhythm suited me, never a change just gently doing a little more each day or week.

At the end of the six weeks, I was out of bed, feeding myself, going for short walks, reading a little, watching TV in short bursts. The very best trick I learnt was to decide and write down the evening before what I was going to do the next day, this instilled the will I/should I do this or that problem. Always scared of a relapse.

After six months at home, I was still following the same routine, by now I could walk just fine, I was reading books and interacting with people. After 18 months I was still following a similar routine, but I started to volunteer in a charity shop and slowly after another six months I was more easy going with my activity levels. My energy levels were good, although I still had the headache and muscle spasms. The headache is still there thirty years later, every minute of the day, but an excellent clinical psychologist helped me with CBT, and I am in charge not the pain.

Seven years after first becoming ill I started in paid employment. Job done.

Jan's Story

Jan firmly believes yoga and meditation have helped her better deal with M.E. and the impact the illness has on her life.

My M.E. journey started thirty years ago. Unlike most people it was not like falling off a sheer cliff, more like sliding down a shallow one. My body gradually started to complain about what I was asking it to do. I actually signed up for a College of the Arts textile design course to get myself back on track. That did not last very long before I slid into full blown M.E.

Over the years I have tried quite a few alternative therapies. The two things that have been most helpful are yoga and meditation. Not only has it helped me physically but also mentally and has given me tools to cope with M.E. I had done yoga classes on and off since my twenties, so I did know something about it. Right back at the start when I was in the M.E. fog, I suddenly realised that my body was incredibly tense; it was probably in fight-or-flight mode. After a while I decided I ought to do something about this. I started to do the relaxation technique I had learnt at the end of each yoga class, when one relaxes each part of the body in a certain order lying down followed by meditation.

It was very hard to do, it felt as if my body did not want to relax and from memory it seemed to shake. It was an extremely odd sensation, however I persisted, and gradually this went away. My body started to relax, and felt much better for it. I made myself do this daily and continue to do it to this day.

Our brains work all the time and it is impossible to empty them of thoughts. The aim of meditation or mindfulness is to take oneself away from these thoughts, concentrate on something particular and allow any stray thoughts to disappear.

Visualisation is the technique used and involves forming mental visual images, such as a favourite flower or beach scene. I often mentally go for some of my favourite walks. I not only see but use the senses of hearing and smell too, like sea lapping on sand. The idea is to take us out of the present. There are books and apps to download to help learn how to do this. I also play soothing music, again there is a whole section of appropriate music on CD.

With practice it does have a very calming effect on both mind and body and can be used if you feel anxious about something. It takes just a few minutes and the results can last the rest of the day.

When I am in relapse I generally read a little poetry. I discovered Kahlil Gibran, author of The Prophet, it’s very powerful. I also have books which I can turn to any page and find a quote or saying which amazingly always seems to help.

I cannot remember when I started my short yoga sessions, probably about 25 years ago. I did return briefly to classes, although unsuccessfully. Gradually I built up a session and now try to do one session three times a week. Now I am in my seventies I am grateful I have done this.

Looking back, I can see the impact this has had on me. When I do yoga and meditation, I concentrate on my body and my mind, shutting out the world and all stray thoughts. It brings one into the moment, and I have come to the conclusion that living in the moment and making the most of that is one way of dealing with M.E. That is not to say that you do not think about the future and hopefully are well enough to make plans, but do enjoy the moment. I now try to enjoy everything I do including, laughingly, house cleaning. I can now do it and am grateful that I am able.

I am sure this acceptance of the moment has helped me deal better with my M.E., and more readily accept the many constraints it has placed on my life. This has not been an instant fix but a very gradual changing of the way I think and tackle life generally. I also believe that it also helps with pacing, which really is the one and only weapon we have to fight with.

Anyone can do meditation but I would advise people to check yoga out first to see if it’s suitable and talk to their GP if they have concerns.

James' Story

James*, from Manchester, found low dose naltrexone (LDN), had a significant impact on his symptoms.

Towards the end of last year I had just come out of a six-month period of being totally bedridden and having to rely on visits from carers twice a day, so I was very interested to read Dr Monica Bolton’s article on LDN in last Autumn’s edition of InterAction.

I myself have suffered from M.E. for 15 years and my own experiences of M.E. pretty much mirror hers. Housebound, suffering from almost all the symptoms that come with ME, only leaving the home with the aid of a powered wheelchair and periodically having long periods of total reliance on carers.

Having tried various treatments over the years with limited success I thought I would give low dose naltrexone a try. Getting your hands on the stuff is not so easy! You have to get it prescribed and after numerous negative conversations with my GP and a referral to a consultant who also refused to prescribe it, I nearly gave up.

Eventually I went to Dickson Chemist, a Glasgow-based chemist which has an online presence and is the same one which had prescribed Dr Bolton with LDN. I supplied them with a letter from my GP saying I have been diagnosed with M.E. and then had a short telephone consultation with them.

Does it work? Well it has for me. I’ve been taking it for just over 14 weeks now. After two weeks I felt a bit odd, doped and woozy.

After four and a half weeks my sleep improved, my sleep pattern has been terrible for years!

After five weeks I started to get side-effects, which I had been warned about, which are strange dreams and night sweats.

After six weeks the dreams were every night. By week seven my sleep was very, very good and I was falling asleep within 15 minutes of getting in bed.

After eight weeks I started noticing an improvement in the way I felt, the feeling was strange, not like other recoveries, I didn’t feel that much brighter but I was able to do a lot more of a thing without the knock-back the day after. I generally had more stamina.

By week 10 I really started to feel the difference. I wasn’t just getting to sleep straight away and getting a good night’s sleep but I was up by 8am every morning and no groggy feeling. I started to notice little things like my bad breath started to improve.

By week 11 I had started reading more, listening to the radio, using my smart phone and making telephone calls to friends. Stuff I never did. Then by week 12 I was going out in my wheelchair a lot more. I started to feel more normal and my recovery seemed to be speeding up.

Week 13 I went out for a family meal, which for me is unheard of and by week 14 I felt physically stronger. I would say sleep and cognitive functions were the first to improve; physical improvements took a bit longer.

What about the side-effects? The only side-effects I have felt are the rather strange weird dreams and the hot night sweats which are every night! The dreams don’t wake me up but the hot sweats do, usually just once a night, which I can’t deny is a bit annoying but well worth putting up with. I suspect I’m capable of doing a good bit more than I actually am but I’m airing on the side of caution and not pushing too hard, because we all know where that gets us! So far I haven’t had a bad day for three months. Progress can feel slow sometimes but it’s all going in the right direction. For once in a long time I’m quietly confident about the future.

Editor’s note: LDN is an unlicensed medicine, so is generally only available privately. It should only be prescribed by a professional who is familiar with your medical condition and history. Seeing one privately will incur a cost, as will a prescription.

*Names have been changed at the request of the contributors.

Action for M.E. does not recommend any individual treatments or management approaches. Instead, we offer information to allow you to make informed decisions about what is right for you. Because we don’t yet understand the biology of M.E., there are no targeted treatments that work for the majority. This differentiates M.E. from other conditions where better understood biomarkers can offer clearer treatment pathways and protocols. So a treatment approach that you find effective may or may not have a different impact on someone else with the illness, and vice versa.