The Chronic Fatigue Syndrome I live with isn’t crippling in the sense of, say, not being able to move about, dress myself or have friends round to visit. I can do these things fairly easily.
And I can do more: I can go out and see friends, I can drive places, and I can wander up to the shops, so long as they’re not too far and there’s not too much to carry back. And if I gauge the energy flows right, and tip the balance with a well-timed cup of real coffee, I can even go out and do photo sessions with friends and clients.
And because I have learned not to rush, not to overdo things, and become more skilled at finding ways to conserve my energy, there are many days when anyone who didn’t know, would never suspect there was anything wrong with me at all.
But where it really makes itself felt is in the complete lack of reserves.
Get the timings wrong, overdo things, push myself a bit too far because I forgot – and I run out of energy very quickly. It feels like someone’s pulled out the stopper and I can feel myself deflating. Ever lain on an inflated air mattress and pulled out the plug? It’s not a dissimilar sensation.
And if I keep going because there’s no choice, I reach the point of utter exhaustion with terrifying speed.
At that point it’s rather like being extremely drunk, but without any of the feel-good factor: lack of coordination, dizziness and a complete inability to focus my thoughts.
It’s not just physical activity which creates this state though, but emotional intensity too.
And right now the family is going through an intensely emotional time, from which there can be no happy endings.
And the guilt I feel for not being able to be as strong for everyone as I need to be, and they need me to be, makes it a thousand times worse.