My experience of ME/CFS
Updated: May 5
I am part of the lack of understanding about myalgic encephalitis / chronic fatigue syndrome (ME/CFS.) I cannot offer hard, or fast, recommendations to people suffering with ME/CFS. I don't fully understand why I got ill or why I have recovered three times. I can imagine my experience is typical or has no commonality with anyone else, but both seem mistaken. So this account is necessarily personal and emotional.
I feel happy, anxious and embarrassed writing about my ME/CFS. It means it happened. It's been recorded and written down. It also means I can't take it back. It's also a change. I have not written about this before. It does not need to be written again. Anger and sadness that it will not be enough.
I want to feel important. To be significant and helpful. Sometimes wanting to get these things from other people rather from within myself. That is an imposition on other people, sorry. So it’s my responsibility to be brief, being curious about other people's experiences and thanking you for reading. My personal experience of ME/CFS is of being one of the lucky ones.
1st time lucky 1995 - 2003. My energy gradually slipped away over two years, beginning with an infection. By 1997 I could not go downstairs for six months. Laying in a silent darkened room 23 hours a day. I never thought I would be thankful I could use the toilet unaided. I am. Helped by a combination of twelve weeks in hospital, good friendships and family, stubbornness and luck. Returning to part time work three and half years in. I would work two hours, rest for an hour in my car, work for two hours and then return home to bed and sleep. Recovering physically over the next four years. Lessons learned:
ME/CFS is real and powerful. I could not simply rest or exercise it away.
Staying sane was the most important task for me.
Keeping a daily diary sped up my learning about how stress and activity affected my symptoms.
I needed to grieve for the healthy person I used to be and accept I may never recover in order to make progress.
Seeking help when I got depressed about my restricted life. From my friends, family, professionals, antidepressants and psychological therapy.
Professionals do not entirely understand the process of ME/CFS. So different professionals give contradictory advice based on their different understandings.
Each person may recover in a way quite different from someone else. I needed to find my own way.
Good fortune plays a huge part in good health.
2nd time lucky 2015 - 2016. A quicker decline this time, immediately after a viral infection. After a month I found myself asleep 16 hours a day. A diary, a routine and calming myself down every day, several times a day (cold showers, relaxation, talking, watching the grass grow.) Convincing my immune system to not feel constantly attacked. Reducing the inputs into my now hypersensitive sensory systems (sound, light, touch, smell and taste.) Psychologically stopping the distress of believing I was under immediate threat of life long illness. Very slowly increasing activity with the guide of heart rate monitor. The symptoms gradually receded, then quickly, returning to work seven months after it had begun. Again part time and gradually increasing to four days a week. Lessons learned:
ME/CFS can return to me suddenly and significantly. My recovery from it can neither be taken for granted nor guaranteed.
My health must come first, then family, then work for me to give myself the best chance to stay as healthy as possible.
Depression and ME/CFS are distinct experiences for me. They can occur together or separately.
3rd time lucky 2019-2020. Another viral infection left me exhausted, disoriented and off work for nine months. I restarted an antidepressant to counter the possibility that my symptoms were an atypical depression, they weren’t. My adjustment emotionally, psychologically and physically was quicker than the second time but my recovery slower. Lessons learned:
Each time I will have anger, sadness and embarrassment at the loss to be overcome.
I quickly established a baseline, digging out my diary from the last time and the helpful books I had kept (see below.) Doing a similar amount mentally and physically each day.
I started with 30 minutes of activity (at first just listening to the radio) then 30 minutes rest (on my bed, with curtains closed, eye mask, earplugs.)
Over nine months I very gradually reduced the length of my rest and increased the activity. The speed of recovery increased with my increasing health.
A stepometer objectively recorded how much physical activity I was doing relative to other days.
Finally I offer three written resources that helped: Action for ME (2020) have produced an excellent free booklet on pacing. Download for free. Better recovery from viral illness (2008) by Dr Darrell Ho Yen. A practical and easily read approach to recovery from post viral fatigue. Free review. Recovering from M.E./CFS A guide to self empowerment (1993) by William Collinge. A positive and psychological plan for improving health. You can download it free.
I would have gladly lived without the experience of ME/CFS. It has taught me many valuable ways to deal with the uncertainties we face in life but still I don't think we need illness to learn them. It feels pointless and random. I don't take my health for granted. I know my vulnerability to this condition remains, recovery may turn out to be remission. So does my determination and enjoyment of the health I have. With thanks to all those who helped me on the way. I am happy to answer questions about my experience and I am curious about yours.