I thought the easiest way to explain my experience would be to go through a typical 24 hours in a day in the life of me.
It’s 9 p.m. and I’m laying on the couch with my fingers pressing into my neck and the base of my skull, trying to recreate what relieving treatment I have received. Trying to relieve some of the throbbing in my neck and sharp pounding in my head. I’ve somehow convinced myself that I have to stay up until 10. When 10 finally comes, I climb the stairs, get ready for bed, and collapse into what I’m hoping will be the most comfortable place in the house. It takes me several minutes and several attempts to reposition myself. Does my neck feel straight and aligned with my spine? If I move slightly to the right will the stabbing pain in my thigh stop? If I roll over will that relieve some of the pain on that hip?
Thanks to the magic of sedatives, I fall asleep in a reasonable amount of time. Unfortunately, part of my illness is over-activity in my brain. Hello neurons, can you stop firing now please? I don’t reach a state of deep sleep, which is where rest and repair happens. Instead, I drift in and out of a light sleep, never getting adequate rest. I wake up several times and reposition my body trying to find the least painful position.
Eventually, by about 4 or 5 in the morning, my body has been in bed too long. The pressure of my own body against the mattress is causing pain that I can no longer tolerate. So I get up, go to the bathroom, stretch a bit, and go back to bed for a few hours. My alarm goes off and I hit snooze. And often sleep past the time I had planned to get up. By 8 a.m. I normally can’t be laying down anymore. The pain has built up and my body is screaming at me.
But I know that up will be better. So I pull myself out of bed to begin my day. Every step towards the shower is painful because my body feels like it was beaten with a sledge hammer the day before.
By the time I get to the kitchen, most of the stiffness is gone. My head is often less painful. And I’m left with that general yucky blech feeling you get when you have the flu. As I am getting ready for work, my body is yelling at me to pay attention to it. I have sharp aches in many different places.
The drive to work has its own challenges. The sharp stabbing in my right thigh makes gas and break hurt. And checking my blind spots before I turn means sending searing pain through my neck into my shoulders.
When I finally get to work, climb out of the car, and walk into the building, I’m already exhausted and it’s only 8:30 in the morning.
The work day is a battle between doing what I need to do work-wise and doing what I need to do for my mind and body.
Throughout the day I take pauses to stretch, to rest, to do deep breathing, to meditate, to hydrate, to find a position that is both reasonable for working and for not making my pain level worse.
I have to remember to be conscious of the position of my body and tension in my muscles at all times. My head has to be sitting in line with my spine and facing forward. I can’t look up, down, or to the sides for any extended time period or I will suffer greatly later. I have an easel at my desk so that I can write while not bending over.
By lunch time, the ringing in my ears has gotten louder than comfortable. It feels like there is an earthquake behind my eyes. I still feel like I have the flu. My whole body aches. I’m having muscle spasms in different places. And suddenly it feels like there is too much stimuli. I want it dark and quiet.
Suddenly my jaw is aching and I realize I stopped paying attention and I was clenching my teeth trying to ignore the rest of my body. My eyes are burning and itchy again, but now they are watering, too. And I can’t think of what it was I was supposed to be doing. All morning I had been forgetting words or misusing words, mostly because my brain was too busy processing pain signals and being in a constant state of stress response.
Lunch is now over and it’s time to get back to work. Despite having “slept” for 10 hours the night before, I am overcome with a sudden and extreme fatigue attack. My body just shuts down. My eyelids want to close. I yawn and yawn and I’m convinced that I can’t make it to the end of the day.
If I do manage to find a way to lay down in a dark corner for 15 minutes, my body decides it doesn’t want to cooperate with a rest after all. My legs start to feel weird … At first it feels like some thing is crawling around inside my legs. Up and down from feet to thighs. But then that thing, which I have named the Kremlars, seems to wake up all its friends and the kremlars start racing around inside my legs, wriggling and wiggling and causing so much pain and discomfort that I have to stand up and walk around to try to make the kremlars go back to sleep.
It’s now the end of the work day and I endure the soreness that driving causes and go home. Now it’s time to “do all the things.” Grocery shopping, cooking, cleaning, walking the dog, playing with the kitten, answering texts from people I’m convinced think I’m ignoring them, marking student work, lesson planning, choir practice, drawing, writing, relaxing… And doing all these things while feeling all of that pain I have already said I experience.
It’s 9 p.m. again. And I’m curled up on the couch with a heating pad, a shiatsu machine, chamomile tea, my “blankie,” my TENS (transcutaneous electrical nerve stimulation) machine, crying and trying to make a list of the things that I am grateful for: love, friendship, sunshine, art, music, laughter, mojitos, that my kitten sleeps on me, cantaloupe, apples, babies laughing, hugs, really cold water, words, and so much more.
Despite the aches and pains, despite my memory going wonky, despite my “good days” where the pain is there but tolerable… I think the hardest thing to deal with is not being able to live my life the way I want to. Not being able to do all the things I did before without planning in rest and recovery time. Not being able to do it all in one day. Not being able to go out with friends whenever I want to. Letting people down when I said I would do something. Knowing that this is lifelong. That I have to make big changes to my approach to life. And worrying constantly that I come across as an irresponsible, unreliable, lazy flake who doesn’t follow through with commitments.
That’s a typical day for me. I want to end this piece with something positive and inspiring. I want to be the person who people say “she did that in spite of…” but it’s not like that. I don’t have anything positive to say about fibromyalgia. All I can do is take care of myself and try to enjoy the small moments like a Sunday morning with a hot cuppa tea.