I Hate This...
I was diagnosed with MS the last week of May 2008.
My right side had gone completely numb; I couldn't keep my balance; and no matter how much weed I smoked, I hadn't been hungry in weeks.
The nuerologist immediately sent me to the ER to get an MRI and about two hours later I had confirmation of all my worse fears.
I started sobbing immediately because I had plans to study Arabic in Morocco this summer and I desperately wanted to go. My parents didn't say no, but they seriously doubted my ability to go on such a trip.
After I was released from the hospital, I immediately began to do everything I could to ensure I would get to go to Morocco. I stopped eating gluten and dairy; i started to take tons of vitamins and met with a nutritionist who specializes in MS and other autoimmune diseases. I rested and rested, not allowing myself to be fooled on the days I felt better. But even then I had to delay the start of my studies by a week.
When I finally arrived in Tangier after 20+ hours of travel, I was completely beat. Unfortunately, there were no taxis left by the time I and the other student managed to gather our luggage and- after waiting an hour, hoping one might appear- we were forced to walk 3.5 km in the fierce mid-day heat to a nearby bus.
Even though we had very pleasant conversations as we wandered along the dusty highway, I thought I would die by the time we reached the bus stop. The guy who picked us up handed me a tissue and said, in this very matter-of-fact voice, "you look like ****." I'm sure I did. I felt like **** when I got off the plane, let alone after a walk with my over-loaded backpack. I then passed out for the rest of the trip, waking only to switch buses and drink some water.
Fortunately, things got better after that. I chilled the first few days, eating well, and sleeping plenty. I even showed up an hour and a half late to my first class because I decided, as a sufferer of MS, I deserved to sleep in.
But once I allowed myself those few days of recovery, I had such an amazing time. It was so wonderful to feel better, to not be stuck in my bed, resting all day. Instead I was exploring the world and doing everything I had wanted to do long before I ever had this ****** disease.
I actually liked telling people I had MS because of the shock on their faces. I often saved it for moments when they would appreciate how much I struggled to get to Morocco or how hard a hike to an amazing waterfall had been for me. My favorite reaction was when I was getting ready to go out with a new friend of mine and we were discussing why I had all these perscription drugs and how much fun certain ones were to take. She was shocked I had managed to convince my doctors to prescribe me all these things. Of course I hadn't had to convince them at all. I needed most of them, so I told her how I had been diagnosed in May and she almost started to cry, but then she said, "I do the MS walk every year, but I never knew anyone who suffered from it. Now I'll do the walk for you." I know that sounds cheesy, but I really meant a lot to hear her say that....
After about two weeks of being there, I had almost forgotten I was even sick. Then my mother reminded me over the phone that I had to start my Avonex injections when I returned. I then began to dread returning home.
I spent the next three weeks trying to pretend I wasn't sick. I stayed out as late as I wanted. I ate lots of bread and dairy and tons of cafe con leche. I forced myself to take long walks in the heat of the day. I pulled all-nighters to finish my arabic homework, write letters to friends, and catch up on my reading. I wasn't sick.
Then I traveled back to the states.
By the time I got to JFK, almost 20 hours after I left Morocco, I was a mess. I was too weak to carry my bag to the skycap desk and I began to cry. But there are good people in the world and a very nice woman (employed by AA) and a skycap helped me with my bag and put me at the front of the line because I was late for my flight. I looked like **** and I was crying when this *****-- who has her perfect makeup on, her fresh clothes, her perfect hair-- tells me to get to the back of the line. Things quickly fall apart and I end up screaming at her, repeatdly, "SHUT UP *****. SHUT UP *****!" She eventually shut up, but not after I had completely embarrassed myself with my uncontrollable rage.
I eventually got back to Chicago (home) but I felt terrible. I spent the whole night puking, suffering extremely painful charlie horses. I hate this disease. My symptoms-- which had disappeared in Morocco-- immediately returned. I was exhausted. My right hand is numb again. I hate this.
I started the shots yesterday and I hate this disease even more. I now feel like **** and the nurse made it very clear I would be in a wheelchair with a ****** up brain if I didn't take the medicine. I hate them.
I just want to forget I have this disease and run far far away to a place where no one would know what this weird disease is.