Today I am bed bound. My hands and feet feel prickly and ice cold, my arms and legs are just useless sacks of wet heavy sand. As a child did you ever playfully punch eachother in the fleshy part of your triceps or thighs and shout DEAD LEG? Imagine this was done to every muscle in your body. That’s what M.E CFS is to me.
Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome effects 250,000 people in the UK alone. Two thirds of which are women aged between 20-40 years old. Just. Like. Me.
I was diagnosed after all other tests came back negative. My regular GP was unavailable and I’d been to see an alternative. After reviewing my medical history, discussing all the symptoms I’d had recurring for the past 2 years and looking at yet another set of inconclusive blood tests he insisted this was infact ME CFS.
I was relieved, angry and scared.
Relieved to finally have an answer.
Angry in my refusal to accept a new weakness.
Scared of the reality that this might not go away.
There is no ‘cure’ or medication that will help me. There is no proof of my condition to wave in the face of the eye-rollers and non-believers. Even those I love who I know love me in return can’t always hide their expressions well enough. I can see when they’re frustrated with me. I can see when they think I’m being dramatic. I can see when they wonder if I’m just a hypochondriac.
There is a long list of symptoms relevant to ME CFS, including the 75% below which apply to me
-Aching muscles and joints
-Pins and needles
-Muscle cramps and twitching
– Poor temperature control
– Memory problems
– Word finding difficulty
– Loss of balance
– Sensitivity to sound
and my personal worst… PAYBACK.
Also known as post exertional malaise.
It’s payback that has me lying here in bed this morning. Though this time I’m not sure what exactly I’m being paid back for.
Usually all my symptoms attack at once if I’ve been active. Maybe I went out for the day, did some shopping, socialised with friends, walked too much or drove too far. Never anything major- just normal day to day life, except for me these kind of activities are punishable now.
Today I’m not even strong enough to raise my arms and brush my own hair. I have to rest and recharge my body’s dodgy battery.
What’s worst about this is the way MEcfs combines so easily with my anxiety. Every second I rest my brain is shouting at me for wasting precious time. Since I’m not at work I should be cleaning, learning, creating.. DOING something. But this isn’t physically possible so I’ll beat myself mentally instead; why can’t I just THINK my way out of this? FORCE myself out of bed and be productive?
I’ve learned now that to ignore my limitations will only increase the suffering they call ‘payback’, I have no choice but to rest when these moments come. And you know what else? It doesn’t matter if other people don’t understand it, or don’t believe me, I know how I feel and I know what I need.
The next battle is with my brain, all that remains is to silence my irrational guilt and self disgust.