1. I am not attention seeking
I wish this was all overexaggerated and for attention, but it’s definitely not. The appointments aren’t just for fun. This is all real.
2. Exhaustion is a different level of tired
Everyone gets tired from time to time. It’s normal. Exhaustion is when no amount of sleep can cure your body from being in a cycle of energy deprivation. Energy deficit occurs and there’s never a break from it. Exhaustion is never being refreshed.
3. Cancelling plans isn’t my fault
I know you may be disappointed or upset, buts it’s not my fault. Some days are better than others and there’s no way to predict when the worst is coming. Commitment can be difficult.
4. Saying ‘no’ is okay
When your main focus is on trying to get better, your (lack of) energy is targeted purely at this. I used to say yes to everything and throw myself into activities, but now I know that’s its okay to say no. I haven’t lost my sense of fun, I’m just focussing on me.
5. Doctors don’t always have a quick fix
When presenting with challenging issues it can sometimes mean that’s doctors don’t have a solution. It can be difficult to hear. They don’t know everything and it can take more than one appointment for any progress to be made.
6. It can be lonely at times
Spending hours a day isolated is never ideal. Your thoughts run away with you and you can end up thinking about tiny irrelevant details from years ago. Human contact is still important. A random message from someone can change the whole outlook of the day. Small things really matter.
7. I am NOT contagious
I get the looks of disgust and the stares. I know I don’t necessarily seem “normal” but there’s no need to be judgemental. I try my best to cover my tube and keep my symptoms discrete. I may cough, I may faint, but don’t turn away from me. I am not contagious.