I see you sitting, apparently serene, and I wonder about your internal world. About what we don't see. About the pain you've experienced in your life. Are you in pain now? Is that why your eyes are momentarily closed? Are your fibroids causing you to stop? Are you disabled? I know better than to utter the phrase so many chronically ill folks have had thrown at them: "You don't look ill".
I am an older parent at 42. I am a disabled parent too. Having M.E CFS, an illness whose most mysterious symptom is extreme exhaustion that doesn't improve with sleep, is perhaps not the ideal fit for caring for a seven month old. My little one is not a good sleeper. Her sleep regressions, of which there are many, last weeks where she wakes every ninety minutes. I'm exhausted....and yet. Some nights after the second or third time of being woken up, I settle her back in her crib and then....I can't sleep. Whilst she lies there, hands delicately placed on her forehead like a renaissance painting, the picture of beauty and serenity, I stare at the ceiling completely stumped as to why sleep evades me.
I draft work emails to send the next morning, I fold clothes, I tidy. I eat a yogurt all in one go. I intend to do creative projects, maybe draw in this time, but for some reason I never feel in the right head space. In some ways this is a rest. It is my time to reclaim my two hands, to be silent without someone else needing a song or eye contact or a cuddle. And in other ways it is breaking my body and mind with a violence I can't explain.
At about five or 6am I feel sleep approach. My body temperature drops, my limbs become leaden and bed starts calling. I climb in and close my eyes. Shakespeare was right when he talked about the 'Golden dew of sleep.' It feels glorious as the dew descends and I drift off.... but then....my baby wakes for the day. My partner gets up and starts listening to a podcast. And the day begins.
The thing on my wrist, I don't call it a Fitbit, because my illness prevents me from exercise, I call it a Shame cuff. My Shame cuff tells me I was awake for four hours, twenty-six minutes. Goal not met. It says 'It looks like you had a rough night. Today is a day to focus on recovery.' I want to scream.
The sleep deprivation makes it hard to regulate my feelings. I have brain fog. I lose words and at times don't understand what people are saying. I am shivery one minute and sweating the next. According to google, these are all symptoms of 'normal postpartum' and M.E C.F.S and also Menopause and also clinical exhaustion. Should I try and figure out which one it is? It's probably some or all of those in different proportions. Should I do some sort of pie chart or Venn diagram? Would that solve anything? Or is that wasted energy? I'm on the rollercoaster now, no matter the reason. I consider this with my last functioning brain cell and then my baby smiles, and coos and it is pushed from my mind until the same time tomorrow.
There is this survival state at points during my day. Not able to sleep because of work or childcare. But also, not mentally there. Too tired to move or talk. Just sitting. Turning my face to the sun and trying to survive. From the outside I look the same: my daily uniform of flamboyant dress, petticoat and ballet flats are all intact. But my internal landscape is completely transformed. I don't look in pain or disabled, any more than any of the Pre Raphaelite women in paintings like Lizzie Siddal or Jane Morris. But we know that sitting there in a pretty dress is only part of the picture. Maybe I should finally do what DWP said and get a walking aid. Apparently, they’re all the rage right now.
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