One of the hardest things for people to understand about my illness is that I simply don’t have the same energy capacity as everyone else. I get frustrated when people don’t understand my limitations.
Stronger than pots really sums it up nicely.
Recently, my husband and I were traveling with visiting family and it was exhausting, both physically and mentally. Part way through a conversation where I was listening to my husband explain a programming concept, it looked like I simply lost interest. I couldn’t concentrate. Couldn’t focus on it anymore. I discovered that I have about 15 mins of active listening before I need a break.
I only have about three usable hours a day, so I have to decide each day what makes sense. Will I shower today? Or do some physical therapy? Maybe start dinner? I have to prioritise because I can only do one major thing.
On the rare occasion that we go out, I shower the day before so I can be clean without wasting energy. Sometimes I have to mentally prepare myself a few days beforehand. I run through social scenarios in my head to try to keep my anxiety to a minimum. It takes about three times for me not to feel debilitating social anxiety.
Don’t even get me started on trips away! Planning a vacation used to be fun. Now it’s necessary. Is the accommodation wheelchair accessible? Are cafes accessible? Are there accessible toilets? The answer is usually no so I limit my liquids because I’m scared of not finding a toilet.
Everything takes mental or physical energy which is a precious commodity now. I really have to decide what is important.