At the moment, my bedroom has no electricity. I open the blinds wide during the day and light six or seven candles every night. It's just enough to read by. I called the new rheumatologist who is managing my Ehlers-Danlos syndrome and told her I was in my second week of physical therapy, but I was still being overwhelmed by pain.
She recommended Icy Hot patches for pain in shoulders and back and said to let her know how they worked, because she was willing to wage war with my insurance company to get me Lidoderm, patches impregnated with lidocaine, a local anesthetic. I've heard good things, so I hope they work out.
In the meantime I've been losing a lot of sleep, taking Tylenol around the clock and even sneaking extra anti-inflammatories when I can. The pain orders me around, determines when and if I do anything, and makes it impossible to plan for the future.
In a week I'll be in Chicago and I worry now about burdening my friends with my pain or possibly getting sick and having to go to the hospital. I HOPE this does not happen.
I cannot convey to anyone how it feels to have this awful disease. Not to my professors, not to my friends, not even to my doctors or my parents. So, I feel as I did as a child, feeling that unique disenchfranchisement all over again, the distance between you and other people.
Going back to Chicago next week, I dimly remember the feeling of listening to my iPod on the L...watching the light cartwheel between the branches, the sound of the rails. I liked to sit backwards. I loved Chicago so much.
I had a grace period, where my body could compensate for my disease and I could live relatively comfortably. But as I aged past my prime, into my mid and late twenties, the system began to fail little by little. I could feel it happening and was terrified. What on earth was happening to me? I got short of breath, my heart would race, my vision would blur...I couldn't concentrate on anything and when people spoke to me, I couldn't understand what they were saying. The words were just sounds, the inflections preserved, but the meanings lost.
My doctors told me I was just having panic attacks, but that didn't seem right, and the medications didn't help. And no one could explain the pain that started as a weak gnawing and at its worst left me writhing and sobbing.
This is such awful, self-fixated stuff. My mind should be a billion other places, but unfortunately it's tethered to my body securely and my body is in crisis. I long to work on poetry, but it's difficult to write in a crisis. Being sick yanks me this way and that, leaving little energy left over for anything else.
I read yesterday, "The lie is that the world is good." It certainly isn't good. Or fair.