The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit to raise awareness of this chronic condition.
ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) is a chronic, invisible condition. In a similar way to fibromyalgia, ME/CFS has faced much scepticism, misunderstanding and stigma. While research is expanding and social awareness is increasing, support for those with ME/CFS is still sadly lacking and stigma remains.
ME/CFS has been estimated to affect approximately 0.2 to 0.4% of the population, and as such around 265,000 people in the UK alone.
Here are a few thoughts around the exhausting experience of chronic fatigue and how it’s about far more than ‘being tired’.
My post on the reality of exhaustion and fatigue previously posted on InvisiblyMe was also shared to The Mighty; many people commented in agreement of how ME/CFS fatigue is so different to being tired after a long day. With ME, you don’t need to have done anything to feel exhausted. It’s far beyond being tired and resting doesn’t resolve the problem. It’s a bone deep exhaustion that I find unbearably frustrating.
To suggest ME/CFS is a mental condition or that it’s laziness is incomprehensible and insulting. Yes, mental and physical aspects can be a two-way street, but for many it’s the case that the effects of chronic illness on their lives then take a toll mentally.
As for laziness, I would happily bet every bone in my body that the majority of those with ME/CFS have at least at some point desperately felt they have wanted to do things, probably on a daily basis, and have been devastated and frustrated that they physically can’t. That’s not laziness. That’s chronic illness.
Dare To Flare
As if it’s not bad enough already, ME has the cheek to flare up. ME/CFS symptoms can vary day to day, hour to hour. It’s unpredictable and this can make many people with the condition hesitant to make plans, as they’ll never know quite how they’ll feel at the time. It may be possible in some cases to estimate how certain things affect you and make symptoms worse, such as any exertion on one day making the following day more symptomatic. Other times, things can take a down turn quickly and unpredictably.
A Unique Experience
Much like all chronic illnesses, each person with ME/CFS will have their own unique experience. There may be similarities in the symptoms and mental impact, but everyone experiences things differently. Symptoms will vary just as will lifestyles, personalities, support systems, finances, and so on. We will all cope with ME differently and experience it in our own way. Life with ME will be a little different for everyone.
For some, ME may be exhaustion every day, but they’re still generally able to do the day to day things to get by. Some may be able to work and retain a social life. Others may lose their jobs and friends and their quality of life suffers dramatically. Some may find flare-ups so bad that they’re bed-bound. Some may experience severe symptoms and struggle to do basic daily activities like showering or eating, and in some instances be admitted to hospital for care and tube feeding. Around 25% of ME sufferers are affected severely and are resultantly bed-bound, housebound or require the use of a wheelchair at some point during their illness.
The levels of severity can vary considerably for each person over time and between people. That said, there is no comparison. Each experience is valued and so is how you deal with it, whether you are brimming with positivity or suffer with depression, there should be no judgement.
Sleep Tired & Body Exhausted
We can become skilled at distinguishing what I refer to as ‘sleep tired’ from ‘body tired’. ME fatigue can be all-encompassing and overwhelming, and it’s very different to being tired from lack of sleep. Similarly, getting more sleep isn’t going to resolve this kind of exhaustion. Lack of sleep, or even too much, can have many detrimental effects, but ME/CFS and sleep don’t go hand in hand with their outcomes. If getting more sleep were easy and would resolve the bone-deep exhaustion then I don’t imagine there would be so many people having their lives turned upside down by chronic fatigue.
My day to day is exhaustion, mentally and physically and in my bones. I ache, I hurt, my brain is foggy, and it’s a case of pushing and running on empty to get things done. But those are the good days. The bad days are where the exhaustion is on another level, where I could lie there are feel it impossible to move even if the house were burning down. I’d like to think adrenaline would kick in but I wouldn’t be too sure. It’s deep fatigue that transcends anything I have ever experienced prior to these last 5 years.
Exercise As Enemy Or Friend
For many, exercising can make symptoms worse. A clinical feature of ME is post-exertional malaise, resulting in a delayed increase to symptoms following even minor mental or physical exertion.
I’m not a doctor but I would just say, as with the conditions themselves, that it’s going to be different for everyone. Exercise may be significantly detrimental for many, while others could find gradual and gentle activity beneficial. It shouldn’t be forced upon everyone and it shouldn’t be assumed that getting some exercise will cure all our ills, a prospect which seems laughable. It’s not a one-size-fits-all approach when it comes to managing ME.
Before my first surgery – before chronic illnesses and chronic pain – I used to be quite active, with running and ample walking, on top of living a full life. Life now is a shadow of what it once was, and just doing a supermarket shop can wreak extensive damage on my body. Some days just getting out of bed and eating is all that someone with ME/CFS can manage, with the daily basics of self care an uphill battle.
Advice along the lines of suggesting a person with ME joins the gym, takes up running, tries hiking, etc, can be dangerous both physically and mentally, with the underlying suggestion that not exercising beyond our capabilities makes us weak or lazy. This is just not the case.
It’s A Symptomatic MishMash
ME/CFS is feeling chronically fatigued and unwell generally, but there are other symptoms that can be experienced. Muscle and joint pain, headaches, dizziness, nausea, irregular heartbeats, sleep problems. Symptoms of ME/CFS can overlap other conditions and the lack of a specific test to definitively identify ME makes it a tricky condition to diagnose. While it has similarities with fibromyalgia, many specialists see the two as more of a continuum, with more chronic fatigue emphasis on ME/CFS, and more pain emphasis on fibromyalgia. Some individuals, like myself, may be diagnosed with both.
Furthermore, those with such conditions may not be exclusively dealing with ‘just’ that condition and may have other diagnoses and symptoms to contend with.
It’s Not ‘In Your Head’
Similarly to conditions like fibromyalgia, where there’s a lack of a definitive test to diagnose the illness, ME/CFS has been, and still is, subject to much scepticism from the public and sadly too many medical professionals. Times are changing and hopefully with more awareness comes greater understanding and compassion as ignorance gets eroded.
ME/CFS is a debilitating illness and research is increasingly uncovering physical abnormalities that are present among those with ME, such as abnormalities in the immune system, central nervous system, within muscles, and in the endocrine system.
More Than Meets The Eye
ME/CFS is, for the most part, an invisible illness. You may look ‘fine’ and your social media may show the times you’ve been able to go out or to smile. The outside world doesn’t typically get to see how you are the other 99.9% of the time, let alone those darker days.
ME/CFS can impact any and every area of life, with many feeling it has all but erased them from the world when they can’t do the things they used to do. Work, leisure activities, simple daily tasks, relationships. It’s more than a little inconvenient and unpredictable, but those with chronic fatigue just do what they can to get by and manage the condition minute by minute.
Only you know how you’re truly feeling and how much of a toll ME/CFS takes on your life, day in, day out. Look beneath the surface of a functioning person with this diagnosis and you’ll find an ME warrior that’s bone-deep exhausted, in pain and unwell, but keeps fighting to get through each day.
Further support :
Note : Always speak to your healthcare provider or physical therapist before you start a new regimen with exercise or diet/medications/supplements, or if you have any queries and concerns.
If you have ME/CFS, how would you describe your fatigue, or is there anything you would want others to know about the condition? If you don’t have ME, do you have any questions?