I would have paid ten thousand pounds to be better. ME/ Chronic fatigue syndrome (ME/CFS) is an illness that, perhaps, to some people doesn’t seem much: ‘Everybody gets tired’. This is an illness that you have to live with before you feel the far-reaching implications of never having much energy. An illness that is more destructive the more severe it gets. An illness that can mean you may not be able to have a career, you may not be able to have a social life, you may not be able to have children, you may end up not having a relationship, you may not be able to do your hobbies. An illness that can make you bed-ridden. I would have given ten thousand pounds to anybody who could have given me an cast iron promise that I would get better. But nobody can, nobody does. The doctors say ‘Sorry, there’s no recovery from chronic fatigue syndrome, you just need to manage it by pacing yourself.’
But I wanted to believe that I could recover so I started to try alternative therapies. A naturopath told me, ‘You need to eat more protein’; I tried a much healthier diet but there was no improvement. Bowen therapy brought a little help for my back but no change in my energy levels. I consulted an acupuncturist but after three sessions of far too many needles and eating meat broth (a vegetarian eating meat broth??), she told me ‘Umm, nothing’s changing. I think you need to try herbs’. So next I made three visits to a Chinese Medical Herbalist who told me, ‘I don’t think you’re committed’ when I dared to ask if it was helping. Then three or four Skype sessions with a Barbara Brennan energy healer and a realisation about how expensive this was getting, made me think again. Seeing a local energy healer seemed to help a little which meant that when she suggested Chi Gong, I had enough energy to try it.
I’d had chronic fatigue for nine years by now and felt disillusioned with all the promises made by the complementary therapists. In the Spring of 2013, I decided to stop searching and to stay with just Chi Gong and pacing myself.
Gradually, my energy had been improving. I could do a little bit more, socialise more than occasionally, do more cycling and running, do more in the house. So when my relapse came in October 2016, it was a real shock. For the first week, all I could do was lie in bed and wonder what had happened. I was frightened, scared and emotional. I struggled to even make basic decisions such as what to have on my sandwich. It was like my body and brain had slowed down a thousand times. Talking to anybody apart from my partner, Gary, was nearly impossible. Even a simple text to my boss took me ten minutes to do and an hour to recover from.
In the end it took eight long weeks – and lots of fumbling in the dark followed by a strict regime of rests, daily walks and a gradual reintroduction to noisy environments – before I could return to a few hours of work each week. Even then, I still could do very little otherwise: I couldn’t shop, I couldn’t watch TV, I couldn’t do much around the house. It was five months before I managed to do every aspect of a wash – putting the clothes in, putting the last ones away, hanging up the clothes. I couldn’t talk on the phone or see people or post on Facebook, and my quiet plea for help went mainly unheard. My support network – when I needed it the most – shrank to just a few people.
By now, I was desperate to find out how to get even a little better. My GP didn’t have the time in her ten-minute slots to give me detailed help. The demand for ME/CFS help in our area is so high there is a nine-month waiting list before I could see a specialist. I needed to do this myself. I started searching, in earnest, for more information about chronic fatigue on the internet. I found Bruce Campbell’s site CFIDS and Fibromyalgia Self-Help where the talk was about taking nano steps to improvement. I decided to sign up for their introductory course staring in January. I kept searching – surely I wasn’t going to be stuck with this restricted life for ever? I couldn’t cope with that. I found talk about chronic fatigue being caused by the body’s flight/ fight response being permanently switched on. I read about the Gupta Programme, which aims to re-educate the fight or flight response. Ashok Gupta, the programme creator, is confident enough that it works to offer a money back guarantee after six months –more than anybody else is offering.
Then I remembered that I hadn’t searched for energy medicine and chronic fatigue. I had found out about Donna Eden’s energy medicine several years before and had really liked the philosophy of self-care and how Donna Eden seemed to really know what she was talking about. I’d bought the book and learnt about the nine different energy systems (such as meridians and charkas) and tried some of the exercises. I’d considered going to see a practitioner but, with the only practitioner in the UK, at that time, living three hours away, I needed more than comments that energy medicine might help extreme tiredness. I needed convincing.
So, in December last year, I searched again for ‘energy medicine/ CFS’ and this blog page came up ‘ME/CFS: steps to full recovery’. As I read what Prune Harris had written, this paragraph struck me:
It is perfectly possible to become fully well, vibrant and healthy after an experience with CFS/ME. This is true whether the CFS/ME was for 9 months, 2 years or several years. ….I have seen several clients who were housebound for many years now returning to full, active and delighted participation in life.
Was this my guarantee? I wasn’t completely sure but in my more positive moments, I thought ‘First I’ll do the CFIDS Introductory course, then the Gupta process, and then I’ll try energy medicine’. Perhaps, between them they will help me get some of my life back’.
I started doing the exercises mentioned in the Prune Harris blog, which at least made me feel I was doing something to help. I was back at work by then, trying to increase my hours from the six a week, I’d had to reduce to. But it wasn’t going well. I was lying down for over four hours a day, just to cope.
Eventually I got to the point where I was making so little progress that I knew I needed to try something different. Through Prune and another energy medicine practitioner, I was referred to Angie Sanders, who, thankfully, lives just half an hour from me. That was a distance I could just about manage with lots of rests. Angie was just coming to the end of her training and I did wonder (at the time) how somebody not yet quite qualified could help with such a complex disease but everybody else was an impossible hour and a half away.
Around then, I bought myself another book ‘You, the Healer’, with a forty day relaxation and visualisation programme. I don’t know whether it was that, or the energy medicine but within a couple of weeks, my emotions which had been all over the place, became much more stable. Having been so up and down over the last four months, this in itself was a relief.
I wanted my health to improve instantaneously now that I was having energy medicine sessions. ‘It will take time to turnaround’ was Angie’s comment. At least, I felt I was going in the right direction. The out-of-balance energy systems that Angie had worked on in the first session, and for which I had been given exercises to do in between, were now balanced. Eventually, I accepted that I just needed to wait until enough of my body was starting to function better. At this point, I was up to working twelve hours a week but any hope of increasing or sustaining this looked remote. My preschool was asking me what hours I wanted to work from September: ‘If nothing changes, six’ was my reply.
I had a plan for what I was going to do when I finished the forty days of visualisation in my book: explore the idea of chronic fatigue being caused by the fight or flight response being permanently on. Just after my fourth energy medicine session, I got an e-book, A Rational Approach to ME & CFS Recovery, by Loz Evans that explains ways to prevent the flight/fight response switching on.
Then, on holiday, I started to feel better. I could walk a reasonable distance, I felt myself relaxing and I was happy being in the beautiful Peak District National Park. All my rests meant I spent a fair time, just sitting and enjoying the scenery. I didn’t think too much of it because this had also happened on our Christmas holiday when we had again been in a mountainous region. I started to read through ‘A rational approach’ and I tried one of the recommended visualisations: ‘The Nervous Little Man’ that aims to calm down the amygdala, the part of the brain responsible for the fight or flight response.
On the morning we left, when there was time pressure to leave the holiday cottage, I felt myself getting stressed. My whole body started to get tense and it felt different from the last few days. I took a break and did the ‘The Nervous Little Man’ visualisation successfully. When I stood up at the end, it felt like the stress hormones were draining out of my body. That evening and the next day, my body continued to feel free of a tension that had been so strong I hadn’t even really known it was there. I took the risk and went out on my bike. Five minutes. Back to the house. Ten minutes. Back to the house. No detrimental effect. Could this be it?
A week later, I was sure. This was it. I was well.
A few weeks later, I saw my doctor for another matter. I had decided to tell her I’d recovered and I’d wondered what reaction I would get: the official line of the UK’s National Health Service was you could only manage the symptoms, not recover. My doctor carefully wrote down the details about how I’d recovered, paused and looked at me: ‘If you find the right person, a person that you are comfortable with, I believe that it is possible to recover.’
Seven weeks on and my energy continues to improve. At times, I still cannot believe it – it seems amazing, miraculous, fantastic. I would have paid ten thousand pounds to be healed. In the end, it cost a lot less. It wasn’t the money that made the difference: it was a deep desperation and my unwillingness to accept a really restricted life. It was my doggedness to search and search for a solution. But, perhaps, most of all, it was a little bit of luck: somebody – in the past – telling me about the one complementary therapy that has the depth and breadth to help chronic fatigue; somebody taking the time to write about a solution, and giving me just enough belief.
My relapse was horrendous but because of it, I have been given health. Thank you Prune, thank you Angie, thank you Gill for telling me about energy medicine. You have given me my life back.
If you have enjoyed this post, you may want to take a look at a couple of my other posts:
I hope you have found this post useful and would love to hear your thoughts in the comments below.