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The Frustrating Reality of ME/CFS

Let me paint you a picture. You’ll have to go back 11 years. You see that 22 year old girl swinging through the crowd? That’s me. I’m on my way to work. I’d graduated from University a year previously and I was working in corporate research in London. Life was good. My job was busy and stressful at times (whose isn’t?) but I loved the nature of my work and my colleagues were great. I was healthy and active; at least four times a week you would find me in a dance studio or the swimming pool.

And then disaster struck. I fell ill out of the blue. One day I was fine and the next I wasn’t. That’s the sort of thing that happens to other people, not yourself, right? Wrong. I learned at a younger age than many that no one, not even yourself, is invincible.

It started on a Thursday afternoon (yes, I still remember which day of the week it was). I had an excruciating headache and felt sick and lethargic. Over the course of a week, I went from bad to worse.

“What does it feel like?” asked my manager. “Like I’ve just run a marathon,” was the only way I could describe it. My muscles ached all over as if I’d been put through a mangle.

I managed two and a half days at work before grinding to a halt. I crashed into bed, there to stay for the next decade and counting.

Unlike many, I got a diagnosis of ME/CFS relatively quickly; this illness was already a well-known foe to my family since my sister had been battling it for two years.

Those with ME/CFS tend to be split into three categories: mild, moderate and severe.

Those who have it “mildly” are able to work part-time or full-time. I find the term “mild” rather unfair and misleading. Although these people can work, they do so feeling like they have a virus. Each day is a struggle and on weekends they can do very little. I doubt any healthy person who experienced this would call it mild!

Those with moderate ME/CFS are usually unable to work but can leave the house for the occasional small outing.

And then there is the 25 percent with severe ME/CFS. Unfortunately, I fall into this category. Great, not only do I have an incurable illness, but I’m also housebound and largely bed-bound, isolated from society and dependent on my husband.

Symptoms vary from person to person but typically involve physical and mental fatigue, agonizing muscle aches and pains, flu-like symptoms, headaches, light-headedness, difficulty sleeping, nausea…the list goes on.

For me, the fatigue is the hardest symptom to contend with. At its worst, I feel like I have a sack of wet sand attached to every single cell in my body dragging me down. And I’m not just talking about when I’m trying to do an activity such as showering. Imagine feeling like this lying in bed. It’s completely debilitating and, at these times, I lose all hope. And each morning, you wake up feeling just as bad as the previous evening; in fact, I always feel worse in the morning. My husband calls me a polar bear, not only because I’m wrapped up in a white, fluffy dressing gown but also because trying to talk first thing is completely beyond me, so any communication is limited to the occasional grunt.

Since no one knows what causes ME/CFS, any chance of a cure is currently a remote possibility. So much research needs to be done. Although a whopping 250,000 people are said to have this illness in the UK, it is never a priority for funding. It may not be a terminal illness, but for many, its effects are still devastating. A lucky few recover but thousands more struggle with it year after year, decade after decade. And, believe it or not, some doctors still don’t recognize ME/CFS as a real illness. Just try getting a home visit from your GP in the UK. You may be housebound and bed-bound but apparently that is not reason enough to not visit the clinic. Grrrrr!

You remember that 22-year-old girl you saw? She had her whole adult life ahead of her. She was motivated, enthusiastic and hardworking. She hated to go one day without exercising (just ask her husband, she could get pretty grouchy if he wanted his car for football and she couldn’t borrow it to get to the swimming pool). That girl is still me. She was no slacker, nor am I. That girl (now woman) is desperate to be a part of life, working, socializing…to be alive and free of these dreadful symptoms.

But unfortunately this illness is all too real.

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Thinkstock photo via twinsterphoto.