In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course…
My name is Maya, I’m 42 and live in Mid- Wales. I have had ME for 8 years, am mostly housebound and use a wheelchair outside.
In April 2012, I underwent a three week residential ME/CFS management programme at Bronllys Pain and Fatigue Management Centre, based in Brecon, Mid-Wales.
My GP has been very supportive since my diagnosis but had run out of ideas so, when she suggested pain management, I felt I had to give it a go.
Pain was no longer that much of an issue for me, but the bone-grinding fatigue, sore throat and debilitating cognitive fog were dreadful. I was sceptical as to how a pain management course could help.
The unit has an open day where the focus is mostly on pain management and, when I questioned this, the staff reassured me that much of the information and techniques were transferable to fatigue.
The unit runs 10 week community courses throughout Mid Wales as well as a three week residential course in Brecon. I went on the residential course.
All through the information day, it was stressed by the staff – a physiotherapist, a psychologist, a pain nurse and an occupational therapist – that they were not offering a cure for pain or ME/CFS.
They were interested in improving the quality of life for people with chronic conditions.
I was, to be honest, still pretty sceptical even after my second interview with the unit’s psychologist and doctor. I had heard that graded exercise and CBT were not great and was really not looking forward to going.
I did not want someone telling me my illness was all in my mind.
I was also very worried about managing a full day of activities that the programme demanded; on some days at home, I barely made it off the sofa.
I needn’t have worried; there was no CBT in sight.
The course is residential; hostel accommodation is set in the beautiful grounds of Bronllys Hospital.
It is a very intense programme. A typical day is 8.30 – 4.30; sessions include gentle stretches with the physiotherapist, sessions on pacing, medication, finding your baseline to help with pacing, sleep management and psychology – they use a Transactional Analysis approach, looking at how you manage day to day.
At no point did anyone suggest my illness was all in my mind.
For many of the sessions, I lay on a mat on the floor as my fatigue was such I found it too hard to sit in a chair. They are very keen for you to keep moving about, keep changing positions and so by the end of the second week I found I was moving from lying on the floor to sitting on an exercise ball to sitting on a chair then back to the floor.
There is a lot of work done on finding out what you can actually do rather than what you think you can do: how long you can do something like sitting or standing.
Every one of us in our group seriously over-estimated how much we could actually do, before we got uncomfortable or began to struggle.
If asked how long I could sit for I would have said I could sit all day. In reality, I could sit for 45 seconds before I began to struggle.
From that beginning we could work out a baseline for pacing. The idea is that on your worst and best days you do exactly the same amount of activity. This way you lose that boom and bust cycle and have a more stable lifestyle and hopefully over time increase your activity so you can manage more.
There were exercises with a physio. They were graded but not the GET I feared.
Exercises were mostly stretching, looking at how to climb stairs or get out of a chair.
They were set to the level I was at (pretty low) and the increases were tiny and it was stressed were what my body could cope with.
No one forced me to do 20 minutes in the gym, rather they said stop doing so much, do it more gently, be more realistic, be patient, relax.
This was not graded exercise as I knew it. Key to the exercise was being relaxed, physically as well as mentally.
There was lots of emphasis on relaxation as part of daily living. Moving, sitting, breathing in a relaxed way as well as daily relaxation sessions.
There is also real emphasis on the ‘quality’ of your movements, as opposed to how much you can do.
If you can only walk 60 paces, 30 steps in a quality way, but the next 30 steps have you staggering from fatigue; then those ‘quality’ 30 steps becomes part of your pacing.
Using the information gathered from working out my baselines – what I could actually do on a bad day as well as a good day – I could work out how to pace activities.
A word about pacing – it can be really frustrating and liberating and make you cry and do a little dance all at the same time. But it seems to work for me. I cried when I worked out how far I could actually walk without it impacting on my health.
I borrowed the timer from the session and spent an evening trying to increase my time (a useless exercise as this only made me more fatigued and cut down my time!).
You have to get over this and see it as a beginning – literally baby steps from which you will build upon.
I left the hospital with a walking time of 22 seconds. That meant once, there and back, to the back gate in my garden. I have done this everyday for three months. Some days I felt I could do way more, some days I struggled, but by the end of the month I was able to manage every day.
I am still working on increasing my walking: I am now walking there and back 2.5 times and my ‘quality’ is great and I am walking more in the house!
Each day I do some gentle stretches and relaxation sessions as well as my day to day activities but I’ve had to learn a whole new way of doing things. Before, I would do chores until I dropped, completely overwhelmed and snappy if not downright hostile, before falling into bed… exhausted.
Now I break up each task, have a cup of tea (I drink way more tea!) do a bit more, drink more tea, do something else, do my relaxation session but I am starting to get more done and I am feeling better about myself for doing it.
This course did not cure my ME but I do feel more relaxed about it.
I am doing much more, in a relaxed and paced way and I feel happier and I feel more confident.
My family notice the difference and say it is good to have the old me back.
That has to be worth anything.
Maya’s story was first published in the ME Association member’s magazine ‘ME Essential‘ (Winter Edition 2013/14), and is reproduced here with both the author’s and the MEA’s kind permission.