One of the hardest things to explain about life with chronic fatigue syndrome / M.E. (myalgic encephalomyelitis) is how much things can change every day. When the smiles are real and you can feel almost normal, those are the good days. But then there are the bad days, and today was one of those days.
Waking up each morning you can’t tell how the day is going to turn out. You peel your eyes open and tentatively stretch out. Today was one of those days when your muscles ache and your joints scream out in pain. You feel almost paralysed and can’t get out of bed. These are the days that you know you should spend resting, letting your body recover from whatever exertion has pushed it over the edge. An apt description, it feels like you’ve been pushed over the edge of a cliff and woken up in a heap at the bottom. Rock bottom.
But staying in bed isn’t always an option and today the demands of studying at university were too high to ignore. From the moment I dragged myself out of bed every small task felt like overcoming the greatest feat. Getting dressed (jeans and baggy jumper, no make-up, thankful for having short low maintenance hair), eating breakfast (while feeling nauseated) and walking (painful, breathless) to class was just the start.
Being a student with CFS/M.E. presents its own set of challenges. Aside from the physical pain (not aided by the uncomfortable chairs and sitting in one place for so long), you also have the struggle against cognitive difficulties. Lack of concentration and memory loss, better known as brain fog, plague many of us with chronic illnesses. It’s a battle to hold a conversation, let alone focus on a lecture. Add to the mix the splitting headaches, a fight to keep your eyes open and stay upright in your seat, and you have a taste of what we have to contend with. Safe to say, I don’t remember a thing that was said to me today.
Invisibility is the hardest thing to deal with on a bad day. No matter how torn up you are inside, the physical effects of this illness don’t show. You might see the signs of pain and fatigue cross my face, but I do my best to hide it. If you ask me how I feel, I’ll probably lie.