Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME) or even NEM (Neuroendocrine Metabolic illness), has been a part of my life for over thirty years. So, while I practice in all areas of Counselling and Psychotherapy, I am particularly interested in working with this and other chronic illnesses and trauma experiences in people.
This interest comes from my own experience of living with M.E and hEDS (Hypermobile Ehlers-Danlos Syndrome), which is a connective tissue disorder and, in later years, an mTBI (mild traumatic brain injury) from a sports injury.
Could my condensed story assist you in gaining a better understanding of debilitating health issues?
Everyone who suffers from any chronic illness has different reasons for becoming unwell. There is no ‘one size fits all’; however, there can often be a link in women to either a genetic component or adversity in childhood.
When I was 23, my CFS/M.E. was triggered by a bronchial infection, which I struggled through, not allowing myself proper time for rest and recover because I was so busy (notice that word) with work. There can also be a predisposition towards M.E. if you have hypermobility – but I didn’t learn this until much later.
Subsequently, part of my glandular / hormone structure (HPA Axis – Hypothalamus, Pituitary, Adrenal Axis) became depleted. Still, because I was young and thought I was invincible, I ignored all the signs, ending up pushing my body to such an extent that within six months, I could hardly walk. I was so exhausted and hurt so much.
I suffered with blinding headaches, my cognition was dreadful and I sometimes looked and sounded as though I was drunk. My fatigue symptoms got so bad I couldn’t even hold a glass of water and had to crawl up the stairs on my hands and knees whilst constantly being sick, before lying in a dark room.
The curious thing is on the outside I looked perfectly normal, which is common for CFS/M.E. sufferers, however the truth is that on the inside I was wiped out, not sleeping, exhausted, in pain and depressed.
My symptoms have varied over the years. An example of these being that I have sometimes had my heart rate going arrhythmic, whilst also suffering from a low heart rate causing me to pass out. On many occasions my legs have felt as though they aren’t part of my body – the list goes on and getting “lurgies” has been known to send me down hill.
Balancing my life and work is something I strive for and have learnt how to do with age. As I get older, balancing my hormones, in conjunction with looking after my adrenal glands (HPA Axis) and ensuring my emotional health is stable, are all top priorities. As is a good vitamin and supplement program, in combination with a healthy diet and B12 injections to keep my energy on track.
I now understand the underlying cause of my CFS/M.E. was rooted in early childhood, manifesting in my nervous system becoming hyper-alert and vigilant. This, in turn, affected my physiology, leading to my becoming unable to deal with large amounts of physical or emotional stress. Upon further genetic testing, it also became clear that I had an underlying genetic predisposition, which created physical and metabolic problems and caused my overall physiology to slow down. Equalling CFS/M.E.
The thing is that although I haven’t let my CFS/M.E. beat me, I have to admit that my health problems have definitely got the better of me from time to time, and I can’t get away from how my illness has sometimes (not all the time) affected all areas of my life over the years.
However, I can’t get away from how much being unwell has taught me. Working with my therapist, mindfulness meditation, being in nature and with my dogs, undertaking years of research, reading, and exploring self-knowledge have been beneficial and paramount in maintaining my health.
That said, I am and always will be a work in progress!