I started getting symptoms of M.E. after a virus which I couldn’t seem to get better from. At first it just felt like a normal virus. I had time off work from my job as a psychiatric nurse, thinking I would be better within a couple of weeks if I rested up. However I didn’t get better and though I felt OK in my mood and my concentration was still good it felt like all the energy was being sucked out of me physically. I could still walk round the house but even to get to the corner shop I needed to get in my car because walking any further was too much for me
As time went on and no improvement materialised I had all kinds of investigations through my G.P. and local hospital but nothing could be found to explain how I was feeling and the diagnosis of M.E. started to be mentioned. I knew very little about M.E. and turned to google (as you do) to find out more. It was not happy reading - a sense of dread and hopelessness filled me the more I researched...there seemed to be very little the medical profession had to offer and many stories of people who had M.E. long term and were thoroughly debilitated.
Shortly after this I called someone I knew who had a diagnosis of M.E. They advised me it wasn’t a good idea to stop exercising if you would usually (this turned out to be really bad advice!). The very next day I determined to drive to the park and take a short walk. I was starting to get cabin fever cooped up alone at home and at the time it felt like a great idea – fresh air, beautiful scenery and I actually felt quite a lot better as I strolled gently on a bright sunny day. The next day however the consequences were dire. My whole body seemed to seize up (my first but not last experience of a ‘crash’). Lying on the sofa the phone was next to me, I wanted to call my mum for help but had to wait a painful half an hour before I thought I could summon up the energy to talk. My mum drove over and somehow – I don’t know how – I managed to stagger out to her car and in to her house on to her sofa. I couldn’t make it up for the stairs and so for the next 6 months I remained bed bound first on the sofa then soon after on a camp bed in her lounge. Even when she hired a stair lift later on I was often too fatigued to sit up long enough to use it.
Initially with nothing I could do but lie there although it was hard it was actually one of the most spiritual times of my life. Having been stopped in the flow of a busy life there was time to reflect, be thankful for small mercies and to pray. I prayed a lot and I felt God near me. I felt sure that given a few weeks to rest completely I would be up on my feet pottering about again. I remembered what I’d read about pacing and tried to apply it. However the expected improvement did not come, things gradually got worse and I wondered where on earth God could be in all this. My faith was shaky and at times non-existent. Many people prayed for me and sent me cards and letters, the support and love was overwhelming but I wasn’t well enough to have people visit except on rare occasions.
Things continued to get worse. A well meaning physio came because my GP was worried with not walking that my muscles were wasting. He asked me to sit in a chair, walk across the room and do some leg exercises in bed. I did even though I was scared of the consequences o doing so much more than I would usually. The next day, another crash. Sometimes I could barely speak, other times I could not tolerate my mum’s voice even for a few sentences. Sound was my enemy and I wore ear plugs and ear defenders to try and drown it out. I couldn’t watch TV or even listen to music. I just lay and lay and waited with nothing to fill the hours. I sat up only to eat. I got out of bed 4 times a day to be taken in a wheelchair to the toilet. I wore an eye mask to block out the light and help me rest. It was not life, it was barely even surviving. At night I lay awake shaking, my muscles in so much pain and spasm and a searing heat throughout my upper body and back. The loneliest, longest hours I’ve ever experienced. I often wished my life would be over because I just couldn’t bear the thought of carrying on like this.
I was in my 30s but my mum had to care for me like a small child. She put her whole life on hold for me and everything was arranged around me. Sometimes she needed to get out just to escape so friends or neighbours would come and sit in the next room, instructed not to make any noise and to change my chillo pillow every now and then. There were times mum had to cut my food up because I couldn’t myself. My hair became matted because I was too weak to sit on the stool by the sink and have it washed – I was on my way to dreadlocks!
Several people got in touch with my mum to tell her about something called the Lightning Process (LP) that had helped them. Even a complete stranger who heard of my plight sent me a letter telling me she had M.E. for 20 years and after doing the Lightning Process course she was able to get rid of her wheelchair and stair lift and lead an active life. My mum called a practitioner but even if she came to my house to deliver the course I would need to be able to listen to her talking so that I could understand the training. I couldn’t do it. It seemed like a solution was there but at the same time totally out of my reach. After that brief glimmer of hope darkness returned again.
The next part of my story is miraculous. I know people will find it hard to believe but it is my story so I tell it. I can understand why it seems unbelievable to people but I cannot change it just because it does. If it hadn’t of happened to me I would probably struggle to believe it too.
A neighbour passed an article to my mum written by a journalist who recovered from M.E. using the Lightning Process. In the article he explained a few of the techniques he had used. Due to my intolerance to noise mum read the article to me in chunks of a few lines at each meal time. It took a couple of days to hear the main section. I decided to take a risk. Things couldn’t get much worse. I started to apply the ideas described and gradually changes began to happen. I was still really cautious though as I knew I could crash again and that could be anything up to 48 hours after even the slightest exertion. But then I got to day 3 and realised that instead of crashing with post-exertional fatigue I was actually continuing to improve. It was a break through, I had finally found something that helped and with renewed enthusiasm I carried on with the improvements snow balling and becoming more rapid and profound each day. I was wheeling myself around the house in my wheelchair, able to talk and listen, able to sit and walk a little even. After so long of not being able to say much there was no shutting me up!
In time I returned to full health and was even able to go back to work. I couldn’t believe what had happened. People asked me whether I wanted to go on the Lightning Process course but I felt so well I said there was no need. I thought I was well for good.
A few months later though and symptoms started to return, first it was my mental abilities, I couldn’t concentrate or think clearly, I was struggling to read, then the physical weakness started to return. I was terrified. I hit rock bottom. I felt there was no hope for me now and no point carrying on.
And then another miraculous turn of events. Things had got as bad as they could and something within me knew I couldn’t carry on the way I was. I asked my mum to invite a local pastor round to pray for me. He didn’t know us but he came and was so kind. He read to me from the bible and laid hands on me and prayed.
I also asked my mum to phone the Lightning Process Practitioner, Sarah and ask her if she thought she could help me – I was afraid she wouldn’t be able to because I had failed to stay well before – maybe the LP could work for others but not for me. Sarah asked to speak to me. I wasn’t sure because I again had problems with talking and listening ,though not as severe as before, however once I started to chat to her I was amazed how long I managed to stay on the phone. I started to read the introduction book to the Lightning Process , even though I hadn’t been able to read more than a paragraph at a time before I seemed to be able to read more easily now and got through the book in a couple of weeks. I had further phone conversations with Sarah and she sent me an application form to consider me for the course. In the weeks leading up to the course things were already starting to change. I still had doubts but I also had times when I really believed I could start to recover again and hopefully stay well this time.
Soon afterwards I attended the course. I realised what I’d learned from the article was only a small fragment of what the whole approach was about and with 3 days training the jigsaw came together and I felt like I now had all the pieces to stay well. On the evening of Day 1 of the course I managed to stand and make a cake, then stand to do the washing up. I couldn’t believe it. The next day the changes were even more incredible, I managed to go for a walk across the fields. At the time I did the course walking was something I did just to get from room to room, the thought of “going on a walk” would have been unimaginable the week before. I completed Day 3 of the course and the changes continued, the transformation was dramatic, by the end of that week I had the energy of a normal person and was exercising. Soon after I started work as a cleaner and then a carer which ended up leading to the full time job I do now working as training coordinator for a care company.
Sarah was always on the end of the phone when I needed help in how to apply what I had learned and I called on her a number of times if I came across a difficulty. I remain in contact with her now. She became a practitioner after her daughter recovered from many years with M.E. following attending an LP course and her genuine motivation and dedication to what she does has been of huge help to me in maintaining my recovery.
Since I recovered I started my own facebook page the link for which is at the end of this post, I have completed the 5 km Race for Life, ran 10 km, joined a walking group, moved out of my mums, joined a gym, worked full time, made new friends, been on some amazing holidays and found a wonderful partner....and more. I include some photos of what my life has been like since recovering. I am completely symptom free and living a normal healthy life, something at many points during my illness I could never have believed was possible. I feel passionate about sharing my story to try and bring hope to others.
As I got well my Christian faith returned and has become more important to me that ever. I am so thankful to God because I believe He is at the source of all healing, whether it comes directly through prayer, medical help or other approaches. LP may not be for everyone but for me it was a real gift from God.
The facebook page has been a privilege and an amazing experience and I’m sure this new project will be the same. I look forward to hearing other people’s recovery stories and getting to know people on this group.
And a little update (12th Jan 2015) my wonderful partner is now my wonderful fiancé and on June 13th this year will become my wonderful husband. I can’t wait to be married – a life that I could not have contemplated lying in that bed a few years ago thinking I was destined to be single my whole life, being looked after by mum! Anything is possible!
Read more recovery stories here