Humans of ME/CFS
Have you ever had the flu? You know the feeling: body aches, body tingling, maybe a headache and possibly a sore throat – and, of course, the crushing feeling of whole-body exhaustion. It’s hard to get out of bed. So, you think that a shower will rejuvenate you – only to find out that you’re even more exhausted after the shower.
And then, there’s the “bonus” symptom: brain fog. Thinking becomes difficult. Speaking can be tough; you can visualize the words you want to say, but they can’t come out of your mouth. You realize that you better not answer the phone, because you’re not sure you’ll understand what the person on the other line is talking about. You become even more isolated.
Ahhh, but there must be an escape from this. So, you schedule a vacation. But, your ME/CFS decides that it isn’t going to let you fully enjoy it. Or, you realize you need to cancel it because you can’t tolerate airports due to the sensory overload. And besides, what’s the point of paying to go anywhere only to lie in bed all the time after you arrive? You want to go to work, but your ME/CFS has something different in mind for you. Instead, you lay in bed in a quiet environment.
But wait, there’s more. Imagine that these symptoms come and go without your ability to predict when it will be mild, moderate, or severe. Now, try to plan your life around that. And, equally as bad, imagine the effect on those around you. You’re rarely present for others. Social events are extremely difficult. Family events can be almost impossible.
Now, you know how I experience ME/CFS. Welcome to my (very small) world.