Finding a Balance: Parenting, a Pandemic and PsA
This year has brought unique challenges to us all. For me, it's been a year of reflection, appreciating what I have, and the realization that I am more adaptable than I ever gave myself credit for.
Yet, to get to this point of 'being kinder' on myself, it took getting pretty close to rock bottom. This is a brief account of my juggling act of parenting and managing my psoriatic arthritis during a pandemic.
The flare before the storm
I was one of the first people to enter 'lockdown' in the UK. I am lucky enough to have an exceptional rheumatology team in my corner, many of whom I have known since the early years of my juvenile idiopathic arthritis onset. I was well informed in February of what was to come. It made me no more prepared, however.
In March, my arthritis wasn't exactly controlled. I was in what had promised to be the final throws of a flare that started back in January 2019, the same month my firstborn entered this uncertain world. For a year, I had struggled with learning to be a parent during a time when my mobility and independence seemed to be continually threatened.
I've spent months in a wheelchair due to my arthritis as a child, and it bothered me little more than not being able to kick a ball around with my friends. Yet, as a parent, this felt life-changing. I suddenly felt mortal. No, I felt guilty.
When my wife and I finally fell pregnant after almost three years of trying due to the disadvantage men have with fertility on the likes of sulfasalazine and other NSAIDs, I was fit and healthy. Biologics had changed my life. I was fulfilling a lifetime ambition of playing competitive rugby and running half-marathons. I had never been so fit.
After a lot of questions of my doctors to reassure my concerns, it felt like the perfect time to start a family as a man with a chronic condition. So to be struggling so much, virtually as soon as my son arrived, made me feel sick with guilt and fear. This wasn't the life I had planned for him or myself. Naively, I thought I had conquered my lifelong disease.
Parenting and arthritis
By May, after two months of effective house-arrest, I was back reliant on crutches for the first time in 10 years. All because I had no access to my usual treatments due to the COVID effort and was confined to my home. I seized up, and with it, the pain rocketed.
My wife, an auxiliary nurse, was exhausted on the frontline, and by this point, I was off sick from work. Due to the restrictions, my son couldn't go to childcare. This left me trying to care for an energetic 18-month-old, most days alone.
Fighting through the dark days
The two months that followed, I can safely say were some of the darkest days of my life. Trying to change diapers while on crutches or catch and carry an 18-month-old around the house felt like climbing Everest. I hate that I counted down the hours to nap time so I could rest.
I cried in the bathroom numerous times a day, so he didn't have to see it. Sometimes it was from the pain, more often than not, it was from the guilt. To make matters worse, when the day was over, and the safety blanket of my amazing wife returned home, I couldn't sleep due to the same fears and excruciating pain from the day's efforts. Most days, I was trying to function that way on 2-3 hours of sleep.
It was being a father that kept me going through those five months of shielding and social distancing. Without my son, I would have quit.
When the balance strikes
Shielding and social distancing came to an end in early August, and with it, my sense of imprisonment. I was allowed back out again, albeit following social distancing. I walked through woods and then, along dunes, watching the waves break. I watched my son pick pebbles on the beach like it was the greatest thing on Earth - and it was.
Over the next three months, I moved, I got access to medical support again. I replaced crutches for walking boots and rediscovered a taste of independence. More importantly, memories of my son being stuck in our home prison for a third of his life with his failing dad faded, replaced by smiles as he experienced parts of the world he had never seen before. Grandparents could finally see what he had learned during that time - walking, his first words, cuddles.
The parenting wins
When he finally returned to his nursery, I realized how much he had grown. He's not even two years old yet, but his doctor staff is amazed he can count to 10. Apparently, that's rare for his age? He lights up the room, and kids are drawn towards his energy and at this moment - this exact moment, I realized.
I didn't fail him. I didn't fail as a father. I held his hand and helped him grow when the world outside was falling apart. I kept it together when my own body was falling apart. For a while, I was lost in the pain and the fear and the fog of not knowing what the future held for me, but despite everything that was thrown at me, I overcame.
The show must go on
Life is one big juggling act, regardless of your circumstances and when the world was a circus, I didn't drop the ball. I prioritized what mattered. I survived, and like all good performers, I suffered for my art.
I put my son before pain so that he could grow into the clever, cheeky toddler that he is today. And upon reflection: I'd go through it all again tomorrow because as a dad with arthritis, that's what we do.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?