I have lost count of the number of people who have asked me what it feels like to have fibromyalgia. It seems like a reasonable enough question, yet it is one I struggle to answer. I try to explain away my fumbling for words by talking about glasses.
When I first started univeristy, many many years ago, I assumed the PowerPoint slides used by my lecturers were slightly blury because they were being projected onto a big screen. It wasn’t until I started wearing glasses that I realised the slides were actually crystal clear, however my eyes saw them differently.
So, what do glasses have to do with fibro? Well, it’s not until someone puts glasses on that they realise the way things should be and can then explain how they see things compared to the norm. As someone who has lived with chronic pain for over 20 years, I find it difficult to explain what it feels like because I don’t know what it feels like not to be in pain.
This morning however, I took note of what my body was doing from the moment I woke. What follows is a recount of an average morning with fibro, for me.
A nose outside wakes me. I lay in bed with my eyes closed. Do I really have to wake up?
I try to open my eyes, my eyelids are heavy. Weighed down. Trying to open them is like fighting against the tide. Fatigue pushes them down as I gather the strength to pry them apart.
Eyes half open, my head is already turned towards my nightstand. I can see my phone. I celebrate the small victory. I lift my arm and move it towards my phone. My shoulder aches. My arm is heavy. Just like my eyelids, it feels as though an outside force is trying to keep my arm down as I will it closer to my phone. I reach the phone and position my hand. My fingers are stiff. Like a joint that has just been taken out of a plaster cast, my fingers feel like they haven’t being used in months. I unfold them slowly and pick up the phone.
I turn the phone towards my face and wince as a sharp pain strikes my turning wrist. It’s 8.30am. I went to sleep around 7.30pm last night. 13 hours sleep. It feels as though I just lay down.
Beyond my bedroom door, I hear my beautiful baby talking to my fiance. I smile to myself. As the corners of my mouth turn upwards, I feel a pulling underneath my ears and an ache in my jaw. It’s now that I notice the tightness of my splint against my teeth and the throbbing of my forehead.
I peel back the blankets and sit on the edge of the bed. My body slumps into position. I stay still for a moment before sitting up straight to stretch out my back. My shoulder blades crack, the sides of my neck pull tight, my back shouts in anger. As I carefully place my feet on the ground and attempt to stand tall, my lower back fights all movement. My wrists screech at having to bear the weight of my body as I rise. Taking note from my fingers, my toes can’t remember the last time they were used and stiffly unfold onto the floor. My ankles and knees let out a piercing cry as they try their best not to collapse underneath me.
I reach the bathroom vanity and grab my toothbrush out of the toiletry bag which is still packed after a few nights away. The thought crosses my mind to place the bag on the floor, out of the way of the sink. As quickly as the thought comes however, I realise that doing so would mean having to bend over to pick it up later in the day. A small inconvenience now far outweighs the pain that would await. The bag stays.
As I raise my right arm to brush my teeth, my shoulder tightens. My forearm aches and my wrist twinges. As I move the brush back and forth my right hand again reminds me of the need to invest in an electric toothbrush. I can’t keep doing this. I can’t keep brushing my teeth. The entire arm aches. It feels awkward. Am I doing it right? Is this a natural movement?
I bend over to rinse out my mouth.
I look in the mirror.