M.E. and Me; Part 1: the dark days
By Ann Caird
The following post will be published in two parts; Part 1: The dark days and Part 2: Light at the end of the tunnel. Ann, a patient at Hadley wood Healthcare has generously supplied her real life story. It traces her persons battle with a debilitating illness and her eventual recovery and progression into a successful and for filling profession. Ann was keen to share her experiences with others in order to help support their fight and personal battles with similar health problems. ME, Chronic Fatigue Syndrome & Fibromyalgia present in so many ways and have so many treatment approaches; what helps one may not help another. What Ann’s story highlights is the fact that treatments can take different directions along the path to wellness and the sufferer has to take the rough with the smooth but perseverance and support wins through in the end!
1994. I had been lying in bed for nearly 2 years with an M.E. type illness. The doctors had done all the tests possible, which collectively indicated M.E.; there was nothing else that could be done for me within conventional medicine. Previously I had enjoyed a full active life and had travelled the world as a nanny and maternity nurse. Jim and I married in 1990, and I’d had shingles just before our wedding, from which I never really fully recovered. Over the previous 2 years, Jim had become my sole carer as my parents lived in Hertfordshire and we were in Perthshire, Scotland. Jim fed me, bathed me, shopped, cooked, as well as working full time on the family farm. He understood when I cried because I couldn’t speak to tell him what I needed or felt; the messages from my brain got confused and so at times it was too difficult for me to physically communicate my needs or emotions. I had immense pain when I ate, was losing weight rapidly, and weighed less than 7 stone. Something had to be done; help had to be found soon.
My parents attended a local M.E. group meeting where Jan de Vries gave a talk and there met Marcus Webb. They got an appointment with Marcus at the Hadley Wood clinic, described my symptoms and medical condition, and immediately my treatment started – we had a ray of hope! Marcus suspected a candida albicans infection in my gut, and his ‘blue loo’ test which he sent me confirmed his suspicions.
Marcus treated me ‘long distance’; the process of clearing my system of the candida was not pleasant, Marcus had warned me of this, but this was the only way to go now. I cut out all sugar, yeast, fruit and simple carbohydrates from my diet, and took medication to kill off the candida in my gut. As the candida died off, the Herxheimer Reaction kicked in, the spores released into my body caused undesirable side effects, but, this was evidence that the treatment was working. This was my lowest point, I felt like my body couldn’t take any more, I felt like I was dying, but I had to stick with it, it was the only way, and Marcus said it would get better… and of course, it did. Marcus then prescribed acidophilus pearls to reintroduce the good bacteria into my gut, and gently returned to a normal diet. I had no more stomach pain, I could eat freely now, so the recovery process could begin.
Once strong enough to travel, I stayed with my parents for a while so I could see Marcus weekly for treatment, and this is when the consequences of 2 years of enforced bed rest and poor digestion became evident. A bone density scan revealed the impact on my bones – I was at high risk of osteoporosis and my hips were on the osteoporosis fracture line on the charts. My muscles were weak and my spine bulged out as it had taken the shape of the bed I had been lying in, rather than having a strong ‘S’ shape. A displaced disc in my lower back caused immense pain when I walked more than 20 meters, so although I was on my feet, I was using a wheel chair much of the time. Marcus stressed the importance of a good, high quality diet, movement to whatever extent I could to start to reverse bone loss and work the muscles again and I started to take osteoprime and protein capsules. At this point I asked Marcus if I would ever be able to work again. The answer? Yes, if I did what I was told, worked at it and didn’t give up, there would be nothing stopping me doing whatever I wanted. So, a glimmer of hope for a normal life again, more than Jim and I had ever hoped for.
Back in Scotland again, and my hormones were in crisis. The mood swings were unbearable for both Jim and I, and I became very depressed as although the pain when walking was slowly improving, the improvement was very slow. Marcus suggested I take Femtrol to help me cope with extreme hormone fluctuations as my body tried to readjust to increasing weight gain and food, and fearing permanent nerve damage, arranged for me to have a cortisone epidural in the hope that the displaced disc would settle.
The results were miraculous! I could now walk without pain, no more wheel chairs! I could start gentle physical exercise to help strengthen muscle and bone and my moods swings began to even out a little. My recovery had taken huge positive step!
Continuing a good nutritional diet, osteoprime, femtrol and occasional digestive enzymes to support digestion, and walking regularly at last, I began to feel able to do something outside the home. I became a (very) part-time guide at Scone Palace, and how I loved it! The company of the other guides, talking to the visitors, giving talks to coach parties, what an improvement in my confidence! I coped by preparing and memorising an ‘informative talk’ for each section of the palace that I worked in, and it was clear that my ability to think and communicate had returned. However, when I get tired, I still occasionally struggle to speak, my brain goes into ‘shut down’, but it’s manageable and predictable now, and doesn’t affect my quality of life. My work at Scone demonstrated the increasing possibilities of a more ‘normal’ life for us.
My diet became critical to my ability to function and perform. I was eating 3 meals and 3 snacks daily, and if I didn’t eat regularly my blood sugar would plummet and I would shake with weakness. I now learned to have snacks concealed about my person in pockets and bags, wherever I was or whatever I was doing. To this day, I still can’t eat large meals; I continue to eat the 3 meals and 3 snacks every day.
Encouraged by my experiences at Scone, I updated my childcare knowledge at college, proving that I really could function in the outside world. In 1999, my updates complete, I started to work full-time within Early Years Education, a huge step, but weekends and holidays were critical resting periods for me. However, in 2001 niggling back problems returned. After an MRI scan Marcus referred me to Keiser Therapy for targeted strength training in London. The therapy was liberating – I was in the gym and my muscles were visibly building, huge progress once again. The niggling pains stopped, and I began to feel really strong again and cope more easily with everyday tasks.
Back in Scotland, I continued strength training myself. Using the Keiser Therapy as my foundation, I bought ankle and wrist weights, dumb bells, and resistance bands and began regular muscle and bone building exercise at home using the weights and combining them with Pilates exercises. Regular bone scans showed reversal of the previous bone density loss, and now I was building bone density steadily in both the hips and lower back. I also now knew that my muscles had to be kept strong if I was to cope with everyday life. At this point, on Marcus’s suggestion, I began taking glucosamine, chondroitin, and MSM to support my back, bone and joint health.
Unfortunately another problem hit… I began experiencing deep pain in my right piriformis muscle when I walked, eventually being restricted to walking no more than 200 meters at a time (on a good day), and wearing just one pair of shoes. Trying to wear any other shoes resulted in immediate pain that lasted days. I became very depressed and fearful of losing everything I had worked for, including my job. Marcus advised as much physical therapy as possible – massage, craniosacral therapy, physiotherapy, reiki, orthotics – and I tried everything. My GP referred me to Cognitive Behavioural Therapy for emotional support and to help me overcome the practical issues of living with such pain. There were no more outdoor walks, walking in a classroom at work was bearable, I could cope with that, but that was my limit.
Part 2 to follow…