‘It’s ME’, the rheumatologist said in May 2017. After more than a year of exhaustion and pain, I finally had an answer.
I suppose looking back, it wasn’t a great surprise, given that I had already been diagnosed with fibromyalgia in 2005, and glandular fever (Epstein Barr Virus) in my 20s. It was already known that the Epstein Barr virus is often a viral trigger for this disease, and yes, ME is a disease, a neurological disease. Pronounced M-E, its full name is myalgic encephalomyelitis. Women are more likely to get ME; of the 250,000 sufferers in the UK, three quarters of them will be women, and the challenges they face get harder in midlife.
What is ME/chronic fatigue syndrome?
One of the problems that sufferers face in getting answers is that ME is a complex multi-system disease with a wide range of disabling symptoms that cut across several medical disciplines – genetics, endocrinology, immunology, muscle pathology (causing energy metabolism impairment), and neurology. Specialists rarely do joined-up thinking, which only prolongs the desperate search for a diagnosis. Meanwhile, a quarter of sufferers are housebound or bedbound and often need a wheelchair.
ME Awareness Week
There’s an annual ME Awareness Week, organised by www.meassociation.org.uk in the hope of raising the funds needed for biomedical research. Without it, there can be little chance of a cure and the challenges will only continue to grow with the addition of ‘Long Covid’ as many of these sufferers now experience the same symptoms as ME patients. There is also a selfie social media campaign #yearsinlockdown running throughout May and organised by www.actionforme.org.uk who want to draw attention to the reality that lockdown never lifts for ME sufferers.
ME, a once-visible disease that’s no longer ‘sexy’
Both of these hugely supportive charities face the harsh reality of trying to raise awareness of a disease that is no longer seen as ‘sexy’ or headline grabbing and has therefore fallen off the media radar. 25 years ago, ME was at the forefront of health pages and dinner party chats. Now, it’s as popular as black-and-white TV.
I have ceased being surprised when I tell people that I have ME and they say that they thought it had ‘gone away.’ “You look great,” they often say. It’s one of the downsides of an invisible illness: No one can see that I feel ‘ill’ most days. It’s like living with permanent flu. The range of symptoms can include: activity-induced muscle fatigue, cognitive dysfunction, pain, balance issues, gastrointestinal problems and sensitivity to light and sound.
What it’s like to live with ME
If I don’t get myself upstairs early most nights, its completely exhausting to try and pull myself upstairs with my rails and can take considerable time. I may well not make it and be forced to sleep on the sofa. Getting out of bed in the morning is a struggle. Even with 8 or 10 hours sleep, I wake up exhausted. I need to conserve my energy to work during the day. I rarely go out in the evenings as I am just too tired.
The fatigue can be crushing and relentless. It’s difficult to explain. When the fatigue hits, I can’t talk, I have difficulty swallowing food, and then the pain also ramps up at night. When I get upstairs, I have to sit on my bed and rest for some time, before I can then go in the bathroom to clean my teeth. I have been using a walking stick for 4 years as my energy levels can dip at any time and I also have problems with balance. As this is a fluctuating illness, symptoms can vary throughout the day and from week to week, making it very unpredictable and hard to manage.
How does ME affect your career?
Understandably, it has had a catastrophic effect on my career choices. Before my eventual diagnosis, I had been working for a private equity company in a global role as Group Administration & HR Manager…I was permanently exhausted. The travel every day (by tube and walking) left me wiped — and that was even before doing an hour’s work. The bi-annual trips to our head office in Geneva gave me anxiety with the thought of how would I manage to get there, be part of the team and deliver my work during the course of a pressurised work week. It was apparent that I couldn’t continue my job and manage my illness.
ME/Chronic fatigue syndrome and flexible working?
I tried finding work that I could do remotely with flexible terms that worked for me and my disease. At that time: impossible. I realised that being an employee could not support my needs, as each time I requested remote working, I was told, “no, you need to come into the office”. It has taken a pandemic for industry to consider other models of working, and still they cling to the idea that we all have to be in the same space at the same time.
So three years ago, having realised that so many in the ME community and midlifers were facing the same struggles and other midlife challenges, I decided to set up the OffTheGrid Consultancy. My aim was to help others like me: midlife professionals dealing with their own health challenges and hidden disabilities and who wanted their own remote portfolio career.
How we help midlife people with disabilities
We now help midlifers create their own brand, nurture their network, provide help and advice with a financial and practical toolkit to triumph over the extra hurdles they face and create a remote portfolio career that works for them. There are not many good things to say about having M.E. But realising that everyone deserves the right to work and sustain themselves emotionally and intellectually and to not be held back by a hidden disability or midlife challenges has been one of them.
Get more information about ME/Chronic fatigue syndrome
Alternative tips for M.E. sufferers
Acupuncture – Clears the head fog, eases the pain and aids the sleep.
High grade magnesium supplements – Take morning and night.
Cold water showers – These have been known to help, as has cold water swimming.
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