One thing that I wish people knew about ME/CFS is how much goes on behind the scenes that you don’t see.
I’m lucky enough to be able to manage university part-time, but most people don’t know how sick I often feel on a daily basis. While I’m able to spend time with friends and keep up with school, people don’t see how much harder small accomplishments are and the tradeoffs and sacrifices I’m constantly making. Pippa described it perfectly when she said: “ It takes me twice as much energy to achieve half as much as my peers.” I think the best way for me to explain how ME affects my day to day life is to say “ Imagine you’re a broken battery that will only charge to 20%. Now try to build a life with that.” Most people don’t see how much planning and maintenance goes into helping me do “normal” things. These are just a few examples:
-I have a meal plan at school, but if I had to shop for and cook my own food, I’d have to drop a class or two because of how much energy it would use up.
-Between classes, I’m usually in my room lying down.
-I see a chiropractor weekly and get botox every 3 months to keep my headaches from becoming debilitating.
-When I leave a social event by 9:00 pm, it’s not because I’m bored, it’s because if I stay up late, I’ll struggle to function the next day.
-I take 9 prescription medications to try and manage some of my symptoms, but they barely touch a lot of them.
-I usually spend Sundays in bed recovering from the previous week.
-I usually have to lie on the floor with my feet against the wall after a shower because of my heart rate spikes and dizziness.
-I feel like crap a lot of the time, but don’t tell people because I’m afraid of sounding like a broken record or a downer.
-On some days, getting schoolwork done means not showering because I don’t have the energy to do both.
-Doing something like vacuuming my small apartment means that I have to spend hours in bed to recover after.
When people see my accomplishments, or even just me doing day to day activities, they don’t see how hard it is for me to do those things. I’m really fortunate to be able to put my limited energy towards things that I care about and to have good days mixed in with the bad ones. ME is a spectrum disorder, so I don’t represent everyone with ME, but I hope that through writing about my experience, I can educate others or make people feel less alone.