It’s so hard to have any type of normal life when you are dealing with a chronic health condition that drains your body’s energy like a smartphone drains its battery.
But how do you stay sane and true to who you are when you are a prisoner of your body. Moments of regular interactions with my friends are very rare and resemble nothing like they used to be. My birthday is coming up and it should be a time for celebrating with others, but instead I’m very nervous about how I’m going to survive the week. Several close friends and family members are lining up some times to take me to lunch or early dinner and all I’m thinking is how am I going to get through this without crashing. How do I strike a balance between trying to enjoy some normal celebrating and my extreme physical limits?
I live my life (or really more like function daily, not much living going on lately) within extreme boundaries. In order to avoid a crash, I am very strict about the number of steps I take each day and the activities I do. But this is very challenging and sometimes I think having occasional days of normalcy are worth the crash, but other days I’m not so sure.
Getting together with friends makes my spirit happy, but not my body. Is extreme fatigue and overwhelming pain the price I have to pay in order to enjoy a little slice of life? Is having a birthday dinner with a special friend worth a day or 2 resting in bed. These are the questions I continually have to ask myself. I hate being alone so much, but I can’t be around others as I pay a steep price for any type of social activity. The days of lonliness and of quiet time do take a toll on my mental state, as I was a very social and inquisitive person in my healthy life.
So is it better to punish my physical being or my emotional being? I don’t have the answer to this question and it’s one that torments me every single second of every single day.