Believe it or not; sometimes I forget I am sick. I forget that my body doesn’t allow me to do certain things or multiple things per day. I forget that a walk into the store to grab milk, may be the only thing I can do today or that driving a short distance can take up all the energy that I have stored. You see the thing is, my diagnosis is a moving target, always changing. Somedays I am able to work and pour a bowl of cereal for dinner. Other days I don’t even get out of bed. I never know what I will feel like on any given day.
Today my friend from childhood asked me if I would like to go to a concert with her this evening. I was so excited. I was finally getting out of my small town and could socialize while hearing music!
I needed this.
I needed to hear music.
I needed a friend.
I was equally excited because I had been trying to set a date all summer to check out a horse farm near me and today was the day I was going to go and talk about options for riding. I smiled and thought things were starting to look up after one of the most difficult weeks of my life (that’s a whole different post).
I took a shower and dried & straightened my hair and threw some jeans on. As I began to descend down the stairs to check on the pups, my body screamed in pain. The type of pain that stops me dead in my tracks. My legs began burning, stabbing, shooting electrical pulses throughout my entire body. When I got to the bottom of the staircase I wanted to throw up. (A brand new symptom that has just emerged.) When my brain cannot handle the level of pain I am in, I reflexively want to puke. Sometimes I do, sometimes I can lie down and will it away. Today I wanted to punch it in the throat.
I was mad. I clenched my jaw and felt my willpower rear up for battle. “I can do this!!!”, I thought. “I can make this happen, I need to make this happen!”. A slight breeze through the window created a chill down my arms. I sighed. I was tired. As the breeze brushed past me, I felt my will power bow down and surrender to the reality of my situation.
I laid down in the recliner wincing in pain. I sadly messaged my friend that I wouldn’t be able to make it and I wanted her to be able to find another person for the event. I hit send and I cried.
I didn’t want to be the girl who cancelled at the last minute. I didn’t want to be the girl that she was irritated by because I said yes and then 45 minutes later, cancelled. I didn’t want to be this girl.
For the past year and a half, I had sadly scrolled through pictures of my friends having fun together. They went to concerts, fundraisers, bars with live music, girls’ trips, wine tastings and vacations. They smiled as they posed for pictures that captured their bond as friends, their happiness and care-free moments. As I scrolled through the posts I felt my heart break each and every time. I longed to be there, sharing the moment & enjoying the unique opportunity to be around people.
I use to be the girl who was always spending time with my friends, going on fun and crazy adventures. I use to be the life of the party. I was funny, I was spontaneous, I didn’t have a filter. I use to dance all night to live music. Prancing around on feet that didn’t hurt, waving my body like a crazy hippie. I loved it. I danced like nobody was watching and I am glad I did because now my body can no longer dance. I no longer can close my eyes and feel the rhythm while dancing in a circle with my girlfriends. I cannot stand in front of my mirror while getting ready in the morning and dance while putting on make up. I no longer sing into brush microphones or pretend I’m Madonna. Instead I sit in front of the mirror and use thick concealer to hid my dark circles under my eyes. I use bronzer to add color to my pale skin which never sees the sunshine and I practice smiling through CRPS jolts of pain.
I try to be grateful, I really do and I don’t want to seem like I am complaining because I am thankful for the life that I have and the things that I am able to do. But some days it just sucks. I don’t get invites to hang out with people very often which is a different world for me. It’s a lonely world. I know I have friends who have invited me to things, and I have had to back out of at the last minute. I know that’s frustrating. It’s frustrating for me too. Every cancelled plan that wedges a distance between my friends and I, is a moment that I grieve. Many nights I cry that I cannot be a friend who is dependable, that now people are uncomfortable because of my pain and they don’t want to upset me if it ends up that I can’t go. I get that too.
I’m sorry. It’s harder for me than you would ever imagine. I have a distinct memory of all of the plans I have not been able to follow through on because of a stupid disease. I try not to think about how different my life would be if I could actually go on these adventures with you. I’ve missed birthdays, lunches, dinner dates, girls nights, book clubs, movies, the county fair, parades, holidays, dance recitals, concerts and trips.
This summer I was able to do a handful of things with friends and not end up cancelling. Those were moments that I hold onto when I have days like today.
So tonight I will not be swaying back and forth to the piano music as it flows through the mountain venue. Instead, I will be laying in bed, watching HGTV & eating ice cream, wishing I was with friends.