It’s coming to the end of ME/CFS awareness month and I haven’t been able to do much in the way of awareness since it has been a month of exams for me. Exams now over I thought I’d write this post by way of raising awareness.
I guess the best place to start is ME/CFS stands for Myalgic encephalomyelitis or Chronic Fatigue syndrome, as it’s more commonly known. The first thought that comes to mind is how an illness of such gravity was came to be known as a fatigue illness. This illness causes 25% of it’s sufferers to be housebound or bedbound and has lower quality of life scores than heart disease and other illnesses which many perceive as more seriousness.
It is more than just being tired. It’s more than just fatigue.
It’s feeling as though your bodies shutting down on you, easy muscle fatigability, i.e just getting dressed or hair washing is almost impossible even though it’s a task you do every day so it’s not a result of deconditioning.
We’re not just lazy and we’re not just depressed although I understand that from the outside it looks that way. May of us are perfectionists, many of us have ignored the signals our body has given us to slow down until it just gives up.
We’re not lucky to not have to work or to have all this free time. With an illness that makes even watching TV difficult all of this free time quickly becomes mind-numbingly boring and painfully exhausting. We have all of this time to rest, but the rest never feels particularly restful, it feels effortful and exhausting to do anything but sleep but hilariously enough many of us have difficulties falling asleep.
I find I often get myself too weak to do anything but not able to drop off to sleep. I find myself stuck in the in-between. And yes I will often have some form of background noise on to keep me company, but often it is just that. Background noise. Some ME/CFS warriors can’t even manage that.
This is an illness that is grossly misunderstood, underfunded, under-taught. It often takes years to get a diagnosis and then the medical profession fails to provide adequate management plans, with specialist centres also being grossly underfunded or completely misunderstanding the illness, seeming to think that if you exercise and think happy thoughts that’s it, problem solved.
If your lucky, you’ll get both.
This is an illness that causes a myriad of symptoms, from heart rate dysfunction and difficulty breathing to debilitating brain fog to visual disturbances. Migraines, muscle weakness, bladder and bowl dysfunction, nausea. There are over 60 different symptoms associated with this illness.
And all the medical community have to call it is fatigue.
Of course not all of these symptoms will affect everyone, and each person is affected differently. But I think that’s another misconception with the illness. Some with ME/CFS can work, run, dance, cook, clean, socialise. Some can study but can’t exercise, clean or have much of a social life. Some can work from home, some can work out of the house. Others can’t work atall yet are still able to retain some elements of what it means to have quality of life, albeit minor. And then the very worst of us are stuck in dark rooms, reliant on feeding tubes, unable to tolerate any noise, human interaction or otherwise.
Quite literally forgotten about, missing from the world.
After 5 years of this illness I’ve ranged from being very mildly affected to being moderate/severe and everywhere in between. I can also say that this illness has been one of the hardest things I’ve had to go through in my life – purely because it takes so much away and makes everything so difficult. But it has also taught me a lot. A lot about myself, about the world we live in, about other people and how to perceive the world. In a weird way, I’m thankful for it, although if you were to pass me a cure I’d jump on it.
ME/CFS needs more awareness. In it’s very nature and severity many of us cannot do enough to raise such awareness. We need allies, we need people to understand. Although it’s impossible to understand until it’s you… So maybe understanding is not the right word- rather knowledge, care, enough to ask the right questions and provide the right support. Enough interest to increase funding, improve research efforts and improve ME/CFS clinics both within the NHS and around the world.