It’s 3:15 AM. I should be asleep because I know the consequences of not getting a full night’s rest are brutal. But I’m not; sleep has apparently evaded me. After the initial wake-up from my son’s cries (from either nightmares or night terrors – I don’t know), I just lay in bed, twisting and trying to regain some remnant of a comfortable position with which to greet sleep. Nada. Too hot. Too many thoughts. Another cry from my son.
I gave up and came here, to write. What else do you do at 3 in the morning when the world around you is dead in slumber?
Insomnia. One of the many characteristics of growing old, my condition, and stress. Take your pick.
The start of school has been, indeed, rough. The short period of rest which summer afforded me is now a rapidly disintegrating memory. It’s only been two weeks and already I’ve neared an anxiety attack. The insomnia has also returned, and the pain/inflammation has increased. I’m back on steroids, in a second attempt at relief. My acupuncturist added new needle locations and new natural Chinese herbs.
I’m at a catch-22, my rheumatologist tells me. She has meds that can help with the symptoms. But those meds, like I’ve written before, are not without serious side effects and monitoring. It’s easy to say no to them when the pain is not intense, when it’s a simple whisper as opposed to a piercing scream. Now I waver. Maybe I should give those meds a try.
Today (or rather yesterday since, technically, 3 AM belongs in a new day) was a long day. Grueling not so much because of the amount of work but because it was void of rest. Dropped off my son. Drove through white, forceful rain. Had meetings. Taught classes. Worked on schedules. Squeezed lunch in there somewhere. Drove to meet my husband and son at a dealership. Spent four hours at said dealership. At dinner too late. I know it doesn’t sound bad. Yes, other people have worse days or more hectic days. But here’s the thing: my body cannot tolerate this. It just doesn’t respond. By the time I was driving home, I was near tears from the pain – a gnawing, incessant burning deep inside my bones and a throbbing in my joints.
When we got home, my husband said to me: we’re getting old. I’m exhausted, too, and my back hurts.
And I wanted to scream. Because this isn’t just me getting old. This isn’t just exhaustion. This isn’t just stress (though without a doubt, stress is an integral player in the triggering of a flare-up). My body’s broken. And no one who isn’t going through the same can really understand.
This is one of the frustrating parts of the disease. The loneliness that comes from feeling like a whining child. The shame that comes with feelings of ineptitude because you have to explain why you’re walking slow, or why you’re stuttering or having difficulty in forming coherent speech, or why you’re taking the elevator instead of the stairs (and hearing people’s thoughts screaming: lazy), or why you’re now trying to lessen your workload in order to manage balance and lessen pain (and again, people look at you, see someone young and “healthy” and think: lazy).
I know I’m at a low right now. I know this is cyclical. It will pass and relief will come again, however brief. I have to maintain my focus on that and hang on for this ride. And I need to write.
Because writing saves me.
Alexandra Alessandri 