In 1993 I was an energetic, enthusiastic 26 year old, with a wide circle of friends, a busy social life and an exciting job working for the National Museums of Scotland. Living and working in Edinburgh, I had a full and fun life. I didn’t stop. I was having too much fun! – As well as socialising and enjoying all the great theatres, cinemas, restaurants and bars that Edinburgh has to offer, I travelled, skied, sailed, climbed mountains, canoed, swam and still had energy to spare.
Then, after a weekend canoeing trip, I developed a viral infection. I ignored it, assuming it would sort itself out, but after a few days felt too ill to work. By the end of the week, I was physically struggling to get out of bed and seemed to be getting progressively worse. Fortunately I didn’t know it then, but it was to be 14 long years before I would recover my health.
I was lucky; Doctors and Consultants were wonderful. My GP knew me well, was shocked at the rapid deterioration in my health and quickly diagnosed Post Viral Fatigue and later severe ME.
My symptoms were many and varied. Initially I was sleeping between 16 and 20 hours a day, but it was un-refreshing sleep. When I woke, I just wanted to be asleep again, because I felt so ill, weak, and lifeless. I lost a stone and a half in weight, despite still being able to eat. I suffered night sweats, brain fog, extreme light and noise sensitivity and muscle pain. I was too unwell to read, listen to the radio, or watch TV and, no longer able to walk, was unable to leave the house. I inhabited a strange twilight world.
Over the course of the illness my health fluctuated, improving for a short periods, only to deteriorate again. As weeks turned into months, and months into years, I had to fight to keep optimistic and to maintain the belief that I would eventually find a way to recover. I tried every option suggested by the medical profession and numerous alternative therapies. Some alleviated symptoms but none provided a solution.
I was so fortunate. I had incredible support from those around me. I have a close, loving, family and they did everything they could to help me, looking after me and keeping my spirits up when everything seemed too much and fighting my corner to get me the help I needed. Even my nephews were involved: posting cards and toys under the bedroom door when I was too ill to see them, “In-case you get lonely and need something to play with aunty Janice!” One of my nephews also tried to work out how we could get a bed into the coffee shop, so I could join them when they went there for tea and cakes! Friends also played a vital part, calling, when I was well enough to talk, visiting when I was well enough to have visitors and understanding when I wasn’t. All their cards, calls and visits were more important than they probably realise. There are so many people I am so grateful to and without them I really don’t know how I would have coped.
The breakthrough for me came in 2007, when a specialist Occupational Therapist and a Physiotherapist came to the house to assess me. I was permanently in bed, lying in a darkened room, unable to tolerate light, unable to speak more than a couple of sentences at a time and in constant discomfort. I was admitted to the specialist ME unit at Queen’s Hospital in Essex where I spent 2 valuable months. With the help of a dedicated team of professionals there was some improvement in my health, I could walk short distances, I could go out for coffee and I could hold a conversation again. However, I had to pace myself carefully, and had to rest regularly throughout the day.
For me an NLP based course was to provide the solution I had been looking for. I had heard about it from many different sources. Initially I was sceptical, I had “been there done that and got the t shirt,” with so many other things, all had promised lots and delivered little. However, the more I found out about it the more sense it seemed to make and I signed up for a 3-day course in London when I came out of hospital.
The results were amazing! At the end of the first day I walked around London and spent the afternoon shopping, caught a tube to the South Bank and watched the 4th of July fireworks, had a meal out and finally fell into bed at midnight. It seemed miraculous! – This was the woman that had been struggling to walk, needed to rest most of the day and certainly hadn’t seen midnight for years! The following day was even better, despite my exertions and by the third day I was beginning to feel like my old self again!
7 and a half years on and I am better than ever! Family and friends are relieved, delighted and amazed. I am now the aunty and Godmother I always wanted to be – It is wonderful to be able to give something back! My nephews were fantastic – They simply asked, “Are you better now?” when they received the answer “Yes!” their response was, “Oh good now you can play football with us – Come on!” It took several months before my family felt they could relax and were confident that I was not going to have another relapse. (They had, after all, seen me improve, only to relapse again on numerous occasions and all this seemed too good to be true.) However, whilst I have had to work at it from time to time and I certainly wouldn’t say it has all been totally plain sailing, I haven’t relapsed and am continuing to build my life in the way I want to.
Once I got better I studied so that I could understand and teach the processes and theories that had helped me and I now teach courses around the world, based on Mindfulness based NLP, CBT, and mindfulness itself. I love working with people and it is so rewarding to see them make the changes they want. I couldn’t have a better job!
It is hard to express just how wonderful it is to be able to do things again; to walk down the street has a whole new meaning having spent years in a wheelchair. To see family and friends and to participate in their lives rather than observe from the side lines, to have a social life, to go on holiday, to go out, to do sport, to study, to work – it all feels incredible, having been unable to do it for so long. After 14 years it feels fantastic to be back!