ME Awareness Day 2020

As it is ME Awareness Day, a fact which had pretty much passed me by since, ironically, I am currently in the middle of a fatigue ‘crash’, I thought I would do a quick post about this crappy illness.

ME (Myalgic Encephalomyelitis), more commonly known as Chronic Fatigue Syndrome (CFS), affects millions of people around the world and the NICE Clinical Guidelines state:

The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.

Some people with this illness are bed bound, unable to cope with any kind of stimulation and need constant care.

Thankfully my condition is ‘mild-moderate’ – I can maintain a job and manage some semblance of family and social life, but I have to be very careful of how I use my energy and use pacing to make sure I don’t overdo things and suffer what I call a ‘crash’. Unfortunately the situation we have found ourselves in with COVID-19 – locked down with young kids, trying to deliver an increased workload and having zero time for proper rest, has inevitably led to my body caving in and deciding it’s had enough.

What does this actually feel like? Its probably slightly different for everyone but for me, it’s like having a drained battery all the time. Like I am running a marathon daily whilst being pummeled with bricks and my brain has been replaced with cotton wool whilst barbed wire wraps itself around my head. When I am in a crash, it becomes incredibly difficult to remember what it feels like to feel even vaguely normal, and every time, I have to calm myself down and remind myself that I have been through this before and as long as I rest and recuperate I will get through this one too.

But with that rest comes guilt. Guilt that I am failing to spend proper time with the kids, that I am unable to help around the house, that once again I am off work and leaving my team to deal with a higher workload. Convincing myself that it’s ok to do nothing for a while, that it’s essential I do nothing, is half the battle.

ME Awareness Day exists mainly because this illness is still misunderstood by many, even in the medical community, and research is sparse. Despite the fact the illness can be life changing and life limiting, after diagnosis many of us are left to deal with the condition alone, as there are limited medical interventions known to help. Even worse, some people are pushed to partake in damaging ‘therapies’ where they are encouraged to exercise in the mistaken belief that deconditioning plays a part in the illness. Many people who try this, end up bed bound.

If you have the time and inclination please do follow one of the links below to learn more about the illness and please consider donating to one of the great charities who provide critical support for sufferers and help push for more research in the hope one day there will be viable treatment.

ME Assocation

Action for ME

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