Spotlight on CFS Awareness: World ME Day

ME CFS tired woman chronic fatigue image by Racool_studio on freepik

ME Awareness Week has begun and will lead up to World ME Day on 12th May. Some of you might wonder why a blog about creativity would dedicate a post to this hidden disability, so I just want to clarify that whilst all health conditions warrant support, this particular one is close to my heart because I have just begun my own CFS journey. 🧭 To be more accurate, I was probably on this road decades ago without realising it, but have only just had the signs pointed out to me and recently been referred to a specialist clinic. Coming to terms with this is still a struggle and a part of me can’t quite accept it.

proudly supporting world me day cfs awareness

I will be honest. Prior to this, I had almost zero knowledge of ME as no one in my social circle has it, so I have had no frame of reference. 😔 An acquaintance of mine used to care for a woman who suffered so badly with it that she was bed-bound. It was a long time ago and I remember thinking back then that surely CFS could not possibly be a real illness since everybody gets tired. Well, maybe this is karma because as it turns out, it’s far worse than just feeling lethargic every now and then.

For the uninitiated, it is now widely accepted within well-established health organisations that ME (Myalgic Encephalomyelitis—argh, try pronouncing that!) and CFS (Chronic Fatigue Syndrome) are one and the same neurological disease that affects the nervous and immune system. It is also common for many with ME/CFS to also develop FMS (Fibromyalgia), which is a separate condition on its own and can include 😴 sleep disorders, bowel and bladder problems, as well as increased sensitivity to pain.

There is a long list of symptoms for ME/CFS (as I said, it’s not just the tiredness) and the process of diagnosis is not a simple one since there is no specific test for it, so doctors will put you through a rigorous and time-consuming process of elimination. 💉 Once everything else has been ruled out and your blood/urine tests come back normal (I am sick to death of being poked and prodded… the nasty bruises from each blood test—and I have had 3 in the last 8 months— took weeks to fade), an ME/CFS diagnosis is more or less a certainty (according to two of my GPs anyway).

Even more vexing, there is no cure or treatment. Small wonder that according to NICE, the “quality of life of people with ME/CFS is lower than that of many people with other severe chronic conditions, including multiple sclerosis and some forms of cancer”. All we have is a strategy to manage our energy (aka Spoon Theory 🥄), plus painkillers, which I have been on every single day since Xmas last year. Truthfully, there are moments when I actually wonder why I even bother to get help for this.

CFS ME spoon theory spoonies

It is also important to note that ME/CFS is nothing like Depression. That is not to say they are mutually exclusive, but the latter is considered a psychological illness whereas there is no evidence to show that this is the case for ME. 🤷 If anything, the prevailing theory posits that the issues plaguing CFS sufferers are physical, probably brought on by an unusual post-infection immunological response.

ME/CFS can be progressive, but it does not mean that outcome is inevitable because everyone is different. It also depends very much on each individual’s lifestyle. I consider myself one of the lucky ones since my symptoms are mild and I am hoping to keep it that way. Perhaps as an introvert, I already have this built-in mechanism to conserve energy which has given me a bit of an advantage, so I still have many “good days” (relatively speaking). Even so, I feel a great deal of frustration because ME/CFS has led me to downsize my entire life and hold back any future plans (creative or otherwise). It is the reason I have been so on-again off-again with my shop and blog. Some friends have suggested that maybe I need to go away on holiday, but if travel is involved, I will need another holiday at home just to recover from it! 😅

One of the hallmarks of ME/CFS is PEM (Post-Exertion Malaise) which means, unlike mental health disorders like Depression, you can’t simply advise someone to exercise their bad mood or fatigue away. If anything, the whole concept of exercise has to be approached with caution. 🛑⚠️ I always thought there was something wrong with me because I never felt better after a workout; now I know the reason why. And just to make it a double whammy, it’s not just physical activity we have to watch out for either because any endeavour using brain power can also be a drain on the battery. 🔋 When your mind gets foggy, everything takes so much longer than normal, and that’s if you remember all you have to do!

I often feel like the woman in that famous painting by Ramon Casas y Carbó, where she’s collapsed in exhaustion on the sofa, except I haven’t just returned from a decadent ball after frolicking all night with everyone on my dance card. It would be something more mundane and far less laborious, such as having a shower, or merely going up a short ladder to my work space in the loft. That alone would be enough to set off breathlessness, light-headedness, and heart palpitations, nevermind the other symptoms already present. 😖 That said, I’m not one to take things lying down, so I usually soldier on with a smile on my face, because the alternative is unthinkable. I am doing my best to pace myself, but it has been a learning curve. And for someone who enjoys long nature walks, dance fitness, and crafting projects, it’s one hell of an adjustment.

The day will come (fingers crossed 🤞 it will be in my lifetime!) when we will fully understand ME/CFS and find a way to overcome it. But until then, I will do my bit. At some point, I would like to be able to contribute a small percentage of my profits so that each sale I make will go towards this cause. Once my shop is ready for that, I will make an announcement on my blog.

In the meantime, if you would like to help out and be a part of ME Week or simply wish to learn more because you suspect either you or a loved one could be a fellow-sufferer of CFS, this post is peppered with many links. 📚 If you live in the UK, Facebook groups like M.E./Chronic Fatigue Syndrome UK and Chronic Fatigue Syndrome Support UK have very understanding members who will be there for you whenever you need a boost. Why not share your story below, or your ideas on how to cope. However, if you wish to be even more proactive, DecodeME are looking for participants in their study. 📋 Alternatively, you can also join in the fundraising efforts by going Blue for ME, taking ME Action. or donating to leading charities Action for ME or The ME Association. 💜