Me and ME
I first developed ME in the Spring of 1989, immediately following a bout of tonsilitis. At the time I was working as a Site Secretary in a factory. A virus had been going around the factory, leaving the victims exhausted for a week or two. It left myself, and another member of staff who had glandular fever at the same time, with ME.
It was during an aerobics class that I realised there was something very wrong. I'd been able to drive to the class, but felt very strange as I prepared for the class to begin. I felt as though I were in a bubble, and couldn't communicate with anyone. I felt that if I spoke, no one would hear me, and everyone else's voice came to me through a fog. As the class began, I found that I could not work out what movements I was supposed to be making. When I did work out the exercises, I was always a step or two behind, and could not co-ordinate. I've never been back.
Although I was able to work full time for the next three years, I slept every evening as soon as I got home from work, and the weekends were mostly spent 'catching up' with myself. My social life was severely curtailed during that first year in particular, as I struggled to come to terms with what had happened to me.
After only a few months, I was well enough to get a new job, but it was incredibly boring, and most days I had very little to do. Boredom forced me to look for another job in a very short time, but looking back that job may have stopped me from getting very much worse early in the development of the disease. I had gone from a very busy job, which after my departure was split between four members of staff, to a position where I was sat twiddling my thumbs, waiting for the phone to ring.
Those first few years were marked by periods of loss of voice, something which is still one of my main problems. I am unable to speak at all for a couple of hours after short naps. It's as though my body takes a long time to properly wake up, and the vocal cords are the last part of me to remain sleeping.
In January 1990, I began work at the Cheltenham International Festival of Music and the Cheltenham Festival of Literature, as the festivals secretary. This was an extremely busy job, with a great deal of overtime at certain times of the year, to get everything ready for the performances. I got through these busier times with extra doses of royal jelly (and chocolate!) and was able to work long hours. Immediately these particularly busy times were over, and things were back to normal, I would lose my voice, for up to two weeks at a time. I believe that the body gives in once you stop, which is why so many of us contract colds when we are on holiday from work. This was my main ME symptom for two years.
I was never sure whether or not this was a coincidence, but three times, having been unable to make the slightest sound for several days, my voice was recovered on train journeys! Could speed have something to do with this? Perhaps I should visit a fairground - maybe it would shake some life into me!
For a brief spell in September 1990, I lost the use of my legs for the first time. A colleague, with whom I shared an office came down with a stomach virus. I didn't catch the virus, but I was weakened to the extent that I could not walk properly. I could not even hold open a book. Every movement became a great effort. I now realise that my immune system was under attack, and all my energies were taken in fighting off the virus. Although I told my GP of my suspicions that I had ME, and related my history of tonsilitis/loss of voice, he told me it was just a virus, and to rest up (thankfully, he is now retired) - a familiar story to many ME sufferers. Ironically, I did recover after a couple of weeks and was able to resume full-time work in readiness for my first literature festival, the following month.
So when the same thing happened to me in February 1992, I assumed I would soon recover and pushed myself to the limits to carry on working, until I could work no more. It wasn't really until September of that year, when I was told the borough council could no longer keep me on, that I had to face the fact that I was really very ill.
I first used a wheelchair late in the summer of 1992. It wasn't the ordeal some might expect it to be. I hadn't been into a shop in six months and I was desperate for some retail therapy!
The first chair I tried was hired from Shopmobility who povide a wonderful service, renting out chairs for shopping trips, or for extended periods. It felt rather strange to sit in one and be pushed at first. Mum found it strange too, and soon found herself trying to treat it like the pushchair she hadn't pushed since my sister was a toddler - pushing me backwards and forwards, as if lulling me to sleep whilst talking to friends. It didn't lull me to sleep - just made me feel sick.
As I only use the chair to save myself from becoming exhausted, it is quite possible to stand up in a shop to reach for something that would otherwise be inaccessible. But if my fellow shoppers have just held open doors for me, or made room for me to turn around, I stay sat down. I always think they might feel rather conned if they see I can walk after being so helpful! It saves on explanations.
Wheelchairs have become a common site in Gloucester, mainly thanks to Shopmobility, and the accessibility of much of the town centre. Fewer children stop and stare than was the case a few years ago, but I still hear the odd comment: "Mum, why is that big lady sitting in a pushcair?" - their poor Mums whisk them away very embarrassed, and rather sharpish! I have to make a confession here - one toddler wouldn't stop staring, and I stuck out my tongue. Sorry - I hope she isn't growing up too disturbed!
My first holiday in a wheelchair was to Menorca. On a visit to a monastery an elderly Nun blessed me - not at my request - but I must have looked as though I needed it. Half an hour later I walked into the cafe, and saw the same Nun. She looked rather startled by her success! I'm expecting to hear news of her sanctification any day.
As general practice still has nothing substantial to offer ME sufferers, I, like many others, have turned to alternative medicine. About five years ago, I made an appointment to see a healer. I was extremely wary of spiritual healing, but it came with recommendations, and what did I have to lose! The wariness soon vanished as I met Georgina. Her openness and friendly manner immediately made me realise that I could trust her completely. And there is no chanting, no prayers, nothing outlandish which would have put me off.
The first session was quite amazing, and convinced me that something special was happening. I sat in a chair, and Gina sat in front of me with her hands either side of my knees. Almost immediately I was aware of heat rising from my feet, gradually creeping up my body. After maybe half an hour this internal heat reached the top of my head, but the right side of my head and my right shoulder remained cold. Throughout this, and subsequent sessions, I also experienced uncontrollable yawning, as my body sought energy, and a twisting outwards of my arms and feet, as the energy spiralled upwards.
After a few sessions I noticed that the paralysis I normally experienced after my afternoon naps was dramatically reduced. I still find it best to lie still for about half an hour after waking, but I can move, and can get up within a few minutes, if I have to.
For my sessions over the last few years I lie down rather than sit, and Gina begins by entering through the base energy, and checking for blockages in the chakras. She is able to feel where the energy is blocked, or where it is sluggish, and concentrates on forcing open the blockages, so that energy will flow freely around the body, enabling the healing process. If I've been fighting off a virus, or I've been overdoing things, some blockages that were opened in a previous session may be closing again. I need to go regularly so that progress that has been made is not lost. I always know when I've done too much, as I get more tired than usual, and can cope with less.
Over the years, my energy has begun to move more freely, which is reflected in my movement generally. Gina said that trying to free the energy at my first session, was like trying to break through a wall. Over the years, the blockages have been freed up, and it is more akin to slowly moving water, very muddy and slow-moving at first, more like a lava flow, but now flowing more smoothly and quickly. I no longer walk with stiff ungainly movements as I did a few years ago. I can bend my legs and walk normally, only stiffening when the muscles are overused, and I can sit up for far longer than I used to, before the muscular backache warns me that I should have stopped. It is also much easier to climb stairs than it once was. I used to find myself coughing as I got halfway up a flight of stairs - no longer - I can now climb a flight of stairs without pausing or breathing heavily.
It is strange how we tend not to notice improvements. Health is taken for granted: the ability to do things that were once normal have returned after years of illness, without me initially realising what has taken place. It was Mum who noticed me kneeling down about three years ago. I did it without thinking, but it was something I hadn't been able to do for years. The pain in my knees was always too intense to bend them fully. In order to change a video, which is close to the floor, I had always rolled off the sofa to lie on the carpet, and pulled myself up afterwards. But there I was, kneeling down - no problem at all! I even sit cross-legged these days.
I find it helpful to look back and remember the way things used to be, in order to fully appreciate the progress that has been made. It is all too easy to concentrate on what we can't do. The vertigo and tinnitis went years ago. Headaches are still a regular occurrence, but not as intense as they once were. These, I mainly manage with homeopathic tablets and tinctures. I no longer get a saliva build up when I talk, which is a great relief to anyone who speaks to me! And I no longer cough from the effort of trying to speak on the telephone.
It's not all good news - I always experience severe exhaustion after each healing session, so severe that I find I can only climb the stairs on all fours for the next 24 hours or so, and find it very hard to think clearly. Gradually, over the succeeding days, everything returns to normal. Generally speaking, improvements are only noticed over a period of months, or even years. If I have something that needs doing, like an exam (see Me and OU ) or a concert to attend (see Me and MB ) I make sure I don't have a healing session for several days beforehand, in order to be well enough to cope.
Sometimes improvements are only noticed when I stretch myself further than I would normally feel advisable. In September 2000, I found myself in a situation that required me to walk further than I had walked in many years (see Me and MB ) and to my delight and relief I coped, and experienced no adverse reaction whatsoever.
Being able to achieve things, even in a small way, can give such a boost. Feeling good about yourself is so important to wellbeing. Completing Open University assignments, and getting good results (most of the time), always gave me something to aim at and achieve. Adrenalin also has a great role to play. I don't think I would have been able to dance (sort of!) at a concert last October under normal circumstances.
Most of the time I still can't walk far. I still get headaches, and I still lose my voice for at least a few hours each day. I am nowhere near the state of health I had in 1989, when I enjoyed regular visits to the cinema and theatre, twice weekly aerobics classes and pottery at evening school, but my life has improved greatly over the last year or so, and I have to believe that it will continue to improve. That is the only way to go on.
Celebrate the good moments however small. Put the bad behind you.
Believe in the possibilities.