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ME/CFS and me.
by Rachel Klyve
I've had quite a few people with ME/CFS ask me about my experience with the disease, about what I found useful in helping me cope and especially how I got better.
I totally understand why people ask these question, I used to ask too. I've been hesitant to tell my story because everybody's path seems to be different and I know that what helped me might make no difference to someone else, but, if telling my story can help someone move towards wellness then it's worth it. This is an extended description of my illness meant for people with ME/CFS, it is not light reading, I don't recommend every one read it. I have found this difficult to write. It is very personal. I have chosen to tell my experience to strangers but if you are reading this please read it with care and know that my family and I did the best we could with a difficult circumstance. So............
I became ill with glandular fever in 1988 when I was 15 years old in year 10 of high school on the Northern Beaches of Sydney. I was an average kid, rarely got sick, was doing well at school, and was fairly active. 3 or 4 kids in my grade also caught glandular fever but whereas they bounced back in a week or two I didn't. I remained very ill for weeks which turned into months; I had high temperatures which lasted months, tachycardia (fast heart rate) not previously experienced, rash, lethargy, muscle and joint pain and nausea. My family GP had knowledge of post glandular fever fatigue and also of ME/CFS. She kept a close eye on me and referred me to a Haematologist at RNSH (Royal North Shore Hospital). After every test under the sun and more months of severe illness I was diagnosed by the specialist as having ME/CFS.
Over the next month my health improved slightly and I was advised to return to school for the start of the new year. I did this and lasted 2 and a half days before the symptoms came back worse than before. I attempted to keep up with Year 11 school work from home but found this impossible as lifting my head from the pillow was an effort and walking to the bathroom took all my energy. I postponed school hoping I would be well enough to return for the start of the next term. This never happened.
This was an extremely scary and confusing time for me and my family. None of us had ever been sick like this before and the diagnosis of ME/CFS at that time did not shed much light on what was happening. Little was known about the cause of the illness or the expected course the illness was likely to take. I was advised I might be sick for months or possibly years. This was almost impossible to contemplate. As a fifteen year old girl it was as if my life as I knew it had ended. I clung to the fact that at that time no person was known to have died from ME/CFS. This was to change later but it gave me a shred of hope that even though I felt like I was dying I probably wasn't.
Over the next year the "lethargy" actually got worse, I felt severe exhaustion exacerbated by the simplest of tasks, like sitting up in a chair. I now describe this stage as feeling like I had the worst flu of my life, the exhaustion felt like lead had been poured into my limbs and body and brain. I lived in a cognitive fog and found it difficult to read or even watch television. Over time the muscle pain that I experienced in my body spread to the muscles in my eyes and I was unable to read for more than minutes at a time before my eyes could not focus on the page (my eyesight was tested and proven to be perfect). I also had insomnia.
My mother was my carer throughout this time. She researched every piece of information she possibly could on the disease and we went to every specialist that would see me. I tried massive infusions of gamma globulin, high doses of vitamins, elimination diet, alternative therapies and more, nothing helped, not even a little bit and some therapies hindered me. I attempted to maintain friendships with my school friends but it became physically difficult and emotionally upsetting to try to explain why I couldn't join them at the beach. My friends drifted away over the coming years.
After about five years the symptoms started to lift a little and I was able to sit up in a chair for more than an hour without being bed ridden by it. I still struggled to walk to the letterbox but I was able now to attempt it once every few days! I did everything I could to try to maintain what health I did have and to maintain some social interactions and education. I exercised, gentle walking mostly, up to the point that I could tolerate it and attempted to increase this which I did manage to do over time; I joined a support group for young people with ME/CFS at RNSH called MEYA and met people who are still some of my best friends (some of whom are also well and some who are still very ill) we maintained contact via mail and phone with the occaisional face to face visits; and I did several correspondence TAFE courses adapting the course to my capabilities, which TAFE helped with very well. I also became obsessively interested in ornithology. I couldn't use binoculars or read bird books much but I could look out the window and I could listen and observe. I became quite skilled in bird identification and gained enormous pleasure from each new bird I saw or learning more about a common species' behaviour. This obsession helped me through the worst of ME/CFS, strange but true!
I had had such bad experiences with therapies that I was hesitant to try any new "cures". I found that over time my capacities improved gradually and I was able to participate more in life. I moved house several times (my family doing the shifting of things) as I found a change of home gave me a bit of light in my life (that's my gypsy blood!). My mother and I went on a holiday to Lord Howe Island together, I spent most of it in bed but being somewhere new was magical and the beach was joy itself! The effect of my illness on my mother’s life was devastating she gave up so much to care for me; it makes me cry to think of all she did for me (Thanks mum). My father and step mother and brother and his then wife all cared for me too at different times and all found this to be a difficult thing to do. I moved a lot also so that I wasn't too much of a burden on any one family member. I thank them all for helping me (tears again).
Another low point came for me after I'd been ill for 10 years, I was improving but at such a slow rate that I couldn't see how I'd ever be fully better. I became depressed. I had managed to maintain quite a positive outlook for most of the illness, which amazes me in hindsight, but I did start to lose hope. I did all I could to make the most of my existance but it became more and more difficult. One small thing I found that did help was focusing everyday on five things that I was greatful for that day. This helped me to connect with the good that existed in my life and to get through the day. I was still depressed but I found gratitude to be transformative, even in little doses. My grandmother was an enormous emotional support throughout my entire illness, she helped me to maintain hope and to live with awareness and love. Her support helped me through the worst of it all (lots of tears here!).
At this time both of my parents had independently developed food intolerances, my mother with ME/CFS symptoms (although she was never diagnosed with it) and my father with no ME/CFS symptoms. They both had been helped by following an elimination diet. I decided to try the elimination diet again through the RPA Hospital allergy clinic. It took several months to make a difference but eventually my most debilitating symptoms did start to lift. I remember a day where I said to my mum "I don't feel awful today!”
Over the next couple of years my health improved significantly, I got my driver’s licence, I met and got together with my first ever boyfriend, I was able to study in person at TAFE. I was still at about 50-60% of "normal" capacity but the change was revolutionary. I learnt how to manage my energy levels, balancing rest with activity. I became interested in mediation, Buddhist philosophy and yoga. The yoga I did was Satyananda Yoga, a gentle form of yoga which emphasises awareness and meditation over postures (asana). This philosophical learning was a new and transformative world for me which helped me to find meaning in my restricted existence and to learn methods to help me manage my health. I recommend it to all!
I am not giving details about the elimination diet here for two reasons, if it's ever undertaken it should be with medical supervision as it is a powerful and potentially damaging course, also because even though it did help me I hesitate to recommend it to anyone with ME/CFS. My diet was so drastically limited in the end that I became malnourished and eventually started to get ill again. I existed for years only on rice, chicken, lettuce, rice bread and eggs. Even though I tolerated this diet with good humour this is a physically unsustainable diet. The RPA team never advised me to stay on it for so long but once I was on it it was next to impossible to get off it. The team advised me to keep eliminating foods if I reacted to them, but eventually I reacted to everything. I had constant diarrhoea of almost totally undigested food, I lost weight and the ME/CFS symptoms worsened.
At this point I had the best piece of luck I had over the course of the illness, I met a local GP (no longer practicing) who came at the whole digestive track issues from a different angle. She saw the food intolerances as a symptom of a greater cause not the problem in itself. She ordered analysis of my digestive track (poo tests) and found my gut to be devoid of any good bacteria at all and some bad bacteria was present. The cause of treatment centred on returning the good bacteria to my gut via probiotics. I was still highly sensitive at this time and could only tolerate minute amounts at first, literally an eighth of a tea spoon of powered probiotics a day increasing over several months to a teaspoon twice a day, this slow introduction was important. Over the period of treatment I used many different brands of probiotics and species of bacteria, this was also important. No single product was a wonder product! The gut has many species of good bacteria, all of them needed to be replaced.
Over the next two years I started to be able to tolerate more and more foods to the point of being able to eat anything I liked and my digestion and weight returned to normal. My ME/CFS symptoms lifted, my energy returned and I diagnosed myself as "better". I discovered later that I do have gluten intolerance, it bloats me and makes me sleepy and I have an unrelated red meat allergy from ticks. Apart from that I can eat anything I like but find that if I keep sugar and processed foods to a minimum my digestion works better. I occasionally take probiotics now if I think my gut needs it, based on symptoms. I can happily recommend probiotics to everyone, with ME/CFS or without if there are any poor digestive symptoms. The worst of probiotics is that they can be expensive and that some companies claim to be the best, do your own research!
My feeling about all of this is that in the beginning I had a radical assault on my immune system by the glandular fever which either knocked my immune system so badly that it malfunctioned and caused the symptoms of ME/CFS or that along with the glandular fever came another virus and the immune system was likewise compromised. I think the digestion problems came secondary but are linked intrinsically to the immune system and is obviously a place of familial weakness. I think the digestive problems may have masked a lifting of the ME/CFS process later in the disease which explains why once the digestive problems resolved I recovered relatively quickly.
In the last year of my recovery when I felt at about 80% capability my father bought me a campervan and I drove around Australia on my own, it was perfect as I had a bed in the back and could rest when I needed it. I sailed the high seas and lived again, there is nothing I've ever experienced that equals this feeling. Health!
There is only one time since recovering that I felt I was on some edge of becoming ill again, but I was pushing the limits a bit! I was working full time as an RN with 12 hour shifts in the emergency department of Royal Children's Hospital in Brisbane, studying Peadiatric Nursing part time, driving three hours home to northern NSW on my days off and helping my boyfriend to build our house (by hand), we used to work past dark with the generator powering the lights. Not surprising I was a bit run down! I finished the study, went part time at work, I moved back home and we got the house finished enough to move in. I remained well. In general the management I do now to maintain my health is energy balance, lots of good sleep and rest if I'm low in energy. When I'm feeling strong I exercise, it helps me to have more energy. I also eat very well, whole foods, low in sugar and very little processed food. I avoid coffee and alcohol, not that I necessarily think there is anything intrinsically wrong with them but I know they don't agree with my body. I try to maintain awareness of my body's needs, it has worked so far and I feel very confident that I will remain well.
Then I decided to go for a long walk...............