I originally posted this to my Facebook page two years ago on World MS Day
Let’s talk about how I am a Liar on #worldmsday As we all know, I have MS (Multiple Sclerosis) a debilitating neurological condition. I’ve been diagnosed 7 years now in July. I am sunny, optimistic and always cracking jokes about my disease to cover up how I truly feel because people don’t always want to hear about how exhausted you are. I go to Loma Linda for various doctors appointments on average twice a week. I get exceptional care. I’m told to “listen to my body” and slow down. Which is probably the ABSOLUTE hardest thing for me to actually do because I have to two kids. I live in constant fear of missing out or not taking the time to adventure because someday I may end up in a wheelchair full time. (The average MS patient doesn’t end up in one- that is an outdated myth but I already use walking devices which give me a higher probability of ending up with one.) I try to take care of whatever needs to be done first thing in the morning because by noon, I’m starting to really drag around and need a nap. I live in a state of guilt for my kids, husband, family, myself- I slow us down in a variety of ways. If I push myself, I pay for it for days. Every little movement is paid for in energy costs of myself – dishes, laundry, grocery shopping, dental appointments, making dinner- all require energy calculations & a payment of energy. I have to take rest breaks after the most mundane things- showers, walking from the house to the car in the driveway, hanging out in the backyard, getting up out of bed. When I use up all my energy, I literally feel my body get heavy and slow down like I am a giant slug. I can ask for help. I have the hugest tribe of people that would help me in an instant. I don’t though. If I did, it would be admitting defeat to myself.
I am a liar.
By not asking for help, I feel like I maintain a slight hold over my disease, screw you MS. If I do, I feel guilty and weak. No one makes me feel this way. I bring it all on myself. It’s hard to live in a grey area. I don’t share this for pity. I share it because I am a really great actress of portraying I am fine when I am not.
I am a liar.
I can’t be honest about how shitty I feel some days. How guilty I constantly feel. I am trying to calm the sea of self-induced madness inside me. I’m trying to find a balance to the self hate ableism.
As I try to figure it out, I’ll continue to lie about how good I am feeling when you ask me because
I am a liar.