For a little over two weeks now I have been feeling AWFUL. I’m talking major pain flare up of my underlying condition (Scleroderma/ Fibromyalgia/ Lupus), fatigued, strange thumping and palpitations of my heart, fainting feelings, chills and hot flashes, the list goes on. Each day I feel like I am white-knuckling it, meaning I am holding on just to make it through the day. And I get to a point where I just can’t keep it together anymore.
The ironic part is that I see friends, family, and even the staff in doctor offices and everyone says how great I look. That I LOOK healthy! For four years now I have never looked how I felt. Aside from becoming very thing at one point and quite gray when my heart was barely pumping, I have done a pretty good job of looking “OK” on the outside. Because of this sometimes people forget or do not realize what I’m dealing with.
The other day I attended a charity event for Frenz for Cause where there was an amazing turnout for a Zumbathon to benefit lung cancer at Memorial Sloan Kettering. It was so hard to sit there and not participate. I wanted to get up and dance and let out all of my frustrations and just not care and move every part of my body until I couldn’t anymore. I wanted to sweat and be out of breath and feel invigorated! I’ve wanted to do it for years –just go crazy and DANCE. But the harsh reality is that I cannot. My body does not allow for that. My heart simply is not strong enough. I am not allowed to do any sort of cardio, I can barely do subway stairs let alone a workout. And I’m 30 years old. This is my life, and I always think I have accepted it but sometimes days like that one creep up and make me remember all the things I cannot do and wish so badly I could.
Each day I’m waking up hoping that it’s the day I feel better. And today, on the 15th or 16th day of pain and weakness it’s getting to me mentally. I am pretty miserable today. I just want to feel good.