I’m going on my 8th summer of having MS and live in one of the hottest cities of the US because 8 months out of the year is glorious! The summers are freaking brutal.
I don’t tell a lot of people I have MS, I don’t want pity, I don’t want the worry that I’m not performing up to standards of others. I don’t want the second guessing of my abilities at work and really I’m just scared I won’t be looked at as who I’ve been in the past to some people. I do want to be understood though but still keep the knowledge of my disease to the ones who matter most to me.
I’m independent and don’t need help but appreciate it so much when it’s offered. I’m lucky to have a partner that understands mostly of what is happening.
I wish people knew about my invisible symptoms that you don’t have to see to believe…
When I say it’s too hot, I can’t be outside for too long, it means it’s too hot for me and I need to be mindful of my time outdoors.
I can walk fine and then all of a sudden trip on a flat surface.
I can go to 5 different stores in one day with no problems and then the next day I can’t even move off the couch from fatigue.
I try to work out at least 5 days a week and some days I rock while others I’m just getting through a workout.
I have numbness and tingling at times in my hands, throbbing in my left knee and it feels like a vise grip is tighten around my knee.
I try to drink enough liquids but not too much as somedays, really everyday, I have to use the restroom hourly, sometimes twice an hour. If you see my rushing to the restroom, please don’t make fun of my “small bladder” or tell me you need to get that checked out. I know what’s wrong with me and don’t need you to advise me of how to take care of me.
I still want to be invited to places even if sometimes I have to cancel at the last minute because I know I won’t be of any joy to you or have fun myself.
The headaches are intense and suck all the life out of you.
I have vision problems if I stare at a computer or phone too long and need to take breaks often.
I am a frigging Warrior!