Taking back control
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Taking back control

From InterAction 94, Christmas 2016

Diane Shortland attended an NHS M.E. self-management course, and came away with a set of invaluable new tools for managing life with the illness. 

I had been ill for 16 years, and although I’d made huge progress, I felt I’d hit a brick wall with my recovery. I had achieved a reasonable level of health but was still limited by my disability; I wanted complete recovery but was at a loss as to how to attain this. 

My GP referred me to the Lincolnshire CFS/M.E. service in September 2014. I attended an initial assessment and was offered a place on the local group rehabilitation programme that October. 

What to expect 

Various programmes are available across the UK, so the content on offer may differ. I was lucky in that the Lincolnshire programme is one of the best in the country and run by Lynsey Woodman, a specialist occupational therapist, with not only years of experience in helping M.E. patients but a real interest in the latest research on the condition. The content was forever being updated; everything based on factual evidence of clinical trials. This appealed to my scientific mind and gave me the confidence to trust in what was being advised. 

The course took on an eclectic overview of many key topics, stating that “managing M.E. is a bit like a jigsaw puzzle, with no one thing working in isolation from another. There are a number of strategies that need piecing together in order to stabilise the symptoms to then enable individuals to begin rebuilding their lives.” The aim of the programme was to “change the focus of control to enable selfmastery of daily living despite the fluctuating nature of fatigue and other symptoms.” 

Over the ten 2.5-hour sessions, the course covered such aspects as the latest research, stabilising activity/ understanding energy, nutrition, pain and sleep management, wellness planning and how to handle setbacks, and social energy management.

Biggest surprises 

Initially, in all honesty, I felt frustrated and disappointed. I had wanted someone to tell me exactly what I needed to do to get well. Then I’d go away and stick to it religiously – like I’d done in my earlier rehab – until I was completely recovered. But in the whole ten weeks, no one told me what to do. The emphasis instead was on providing us with our own wellness toolkit; a sort of first-aid box to dip into whenever we needed to fix ourselves of whichever symptom we were struggling with at the time.

I cannot stress enough the need to keep an open mind, because this course really changed the way I viewed myself and the world around me. Over the ten weeks we devised our own contents for our individual kits, based on what worked best for us. Throughout the course we were given all our own power, and while I found this scary, it took control away from the illness and gave it back to me. 

Another breath of fresh air was that the emphasis was on wellness, not illness. We looked at how a person in optimum physical and mental health functioned, not how an ill person operated incorrectly. It may not sound that significant, but the impact of this reversal was exhilarating. Moving away from living with illness, we began to understand what a healthy body and mind requires to work efficiently and serve us well. 

Applying this knowledge to my own life really made a difference. For example, we learned about ultradian body rhythms (a recurrent period or cycle repeated throughout a 24-hour day) and how we all experience natural energy/concentration dips every 60-90 minutes. I discovered that by taking a short break at 70 minutes of any activity, I could largely eliminate my boom and bust cycle.

I also found the social side of the programme hugely rewarding. It wasn’t 13 ill people looking for tea and sympathy; it was a group of focused individuals who were determined to achieve their dreams. With Lynsey encouraging positive interaction, it quickly became a trusted group of friends. All discussion, however seemingly bizarre, was conducted without fear of prejudice. 

We still meet regularly for lunch, and we share each other’s lives and experiences online via a private Facebook group. I value this greatly. Several of the friends I made in the group are unable to work, and so last December we organised our own ‘work Christmas party’ since we decided that recovery is a job of sorts, and a great time was had by all. So the benefits of the course came in some unexpected ways. 

Managing the course 

While the social aspect of the meet-ups is lost for those bedbound/housebound sufferers where the course is not feasible, the severely affected are not discarded. In such cases one-to-one home visits are provided, and the course content is adapted to suit every individual’s level of severity and needs. 

I myself was well enough to attend, but nonetheless found committing myself to going along for ten weeks in a row a daunting prospect. But this had been taken into account, and part-way through each class Lynsey guided us through a meditation/neurological relaxation to help fatigue levels, as well as exercises to keep us free from pain and discomfort. These, along with a short tea break, made the sessions achievable.

It was refreshing to live, if only briefly, in a surreal lock-in where M.E. and its symptoms were the norm. All anxieties about fitting in vanished, freeing up precious energy for actually making progress. 

Eighteen months on, I may not be physically much better but I am certainly much more aware. I’m faster to act on warning signs of impending relapse and have a rock solid source to refer back to. This helps keep me on track. 

Mainly though, the course provoked a shift in me; I needed to move on from my rigid years of self-discipline and move to a more natural way of progressing. I’ve learned to move my focus away from illness and onto real living again, and that alone is something to smile about.

Useful resources

To find your nearest M.E. service, visit our services directory . Ask your GP or other health professional about M.E. self-management and/or general self-management courses available in your area. Be aware that course leaders of general self-management courses may not have specialist M.E. knowledge.

Our medical expert Dr Gregor Purdie says: 

As a GP I have always been interested in self-management; I see it as one of the ‘prescriptions’ that I can offer patients. While it does not replace medicines and other therapies, it can be a strong foundation for living with longterm illness. I have seen it make a valuable difference for many people, empowering them and enabling them to move forward with their lives. Self-management involves taking control of your illness and your life. It allows you to learn about your illness in greater depth, look at how it is affecting your life in all its aspects, and explore where there are changes you can make yourself to help improve your wellbeing. Meanwhile your health professionals are still there to support you with answers to your queries and concerns. A good course will cover education and understanding of the illness and then move on to looking at strategies that can make a difference. With M.E., this involves not only looking at sleep patterns and pain management, but also how to measure energy levels and plan activities (it is not just physical exertion that can cause the fatigue of M.E.; we must also take into account emotional exertion and stress). One has to be ready to work at this, so before embarking on a course please discuss it with your health professionals.

About the author

Diane Shortland has a Master’s degree in Professional Writing and works part time as a freelance writer. She has a working background in clinical psychology and has had M.E. for 18 years. Diane has had many articles and columns published on living with the illness and is currently writing an upbeat memoir of her experience of coping day to day. For more information visit her freelance website: www.dianeshortland.co.uk

Takeaway points

  • Provision of specialist M.E. self-management courses varies across the UK, depending on availability of local services, and course content may vary
  • Courses focus on helping participants devise their own wellness toolkit
  • The course content is adapted to suit differing levels of severity and need
  • If specialist M.E. courses are not available in your area, you may be able to access more general self-management programmes for people living with long-term health conditions.