It happened in the middle of a class about pain management. Which in these Covid times means it happened in the spare room, that we've turned into an office, while I was on a Zoom call.
Before a mindfulness meditation, we were asked to silently rate our pain on a scale of 1 to 10. Afterward, we were asked to rate our pain again. The hope was that each of us would experience some reduction in pain, however small.
I didn’t.
Because for the first time in years my pain had been at zero, to begin with. Something I hadn’t realised until that moment.
In chatting to P about it later, I figured out that this wasn’t the first time. I had been speaking about my pain in the past tense for a couple of weeks — including at a hospital appointment — but it hadn’t sunk in enough for me to be fully conscious of the lack of pain.
Pain had been normal for so long that I didn’t immediately notice when it disappeared. Which is weird, but also not. It is a strange sensation, being completely pain-free after 3+ years.
It has been a few months, yet I am still adjusting. ‘I am not in pain today’, I find myself saying out loud a few times a week. Sometimes to P. Sometimes to the dog. But mostly to myself.
When the world went into lockdown in March 2020, I half-joked that nothing much was changing for me. I was two years into an arthritis flare-up that refused to play ball, no matter what medication I threw at it. It was a long time since hanging out with groups of people was a thing I did with any regularity.
I was already only leaving the house when necessary.
When the increased restrictions were announced soon afterward, leaving the house only when necessary became not leaving the house at all. While daily exercise within a certain radius from your home was allowed for everyone else, those of us at higher risk were not allowed to go further than our gardens. Cocooning was the term chosen to make this measure sound palatable or at the very least less doom-laden.
Not leaving the house at all was also an act that was familiar to me.
During my mid-20s, a depressive episode associated with my undiagnosed bipolar disorder caused me to hide from the world. The days, weeks, and months blended into one as insomnia prevented me from sleeping and my days were spent doing absolutely nothing. All from the comfort of my own home.
Again, I half-joked that I’d gotten a headstart on cocooning before it was the must-do thing for spring.
This time cocooning meant moving in with my parents-in-law. P’s job meant that he was in contact with too many people for me to stay at home.
I don’t remember the first time I experienced pain. Considering the impact it has on my life it seems like something I should have a vivid memory of, but I don’t. What I do know is that the index finger of my right hand has always been the most painful.
I’m not sure when I realised my tiredness was something other than not getting enough sleep. Instead, it was unrelenting and painful fatigue that I could not shake. It was accompanied by a foggy mind and feeling like my entire body was bruised.
Chronic fatigue syndrome was the diagnosis reluctantly proffered and even more reluctantly accepted. By process of elimination, it was the only thing left. If it’s not all of these other things; it must be this collection of unexplained symptoms thrown together seemingly without connection wreaking havoc on my body and mind.
The problem with diagnoses of elimination is that there are often differing opinions between doctors. And thanks to my local hospital and its revolving door of rheumatologists I have seen more than usual in recent years. That CFS diagnosis has shifted into treating chronic fatigue as part of my inflammatory arthritis rather than a standalone condition. This change makes sense to me. But, then, the CFS diagnosis began to make sense too.
If the last few years have taught me anything, it is that knowing that your immune system is attacking itself and understanding why your immune system is attacking itself are two different things. Doctors don’t always understand why, either. Which is frustrating, to say the least.
Autoimmune diseases affect women at a rate almost four times higher than men, I am told. The reasons why are not fully understood. My questions garner a different response depending on the doctor. Testosterone protects men from malfunctioning immune systems, says one. The numbers are evening out, says another — as if that is explanation enough. When men fall ill their symptoms are usually worse, a particularly defensive junior doctor announces.
I do not have the energy to ask whether this is true or whether men’s description of the pain they experience is taken at face value, while women’s pain is dismissed. Women are more likely to be prescribed sedatives and antidepressants instead of pain medication. That we may not have an underlying mental health issue does not deter many medical professionals. Our pain alone is a mental illness. If we do have a psychiatric diagnosis it is acceptable to wash your hands of us. To treat us as other. To not treat us at all. Instead, I reassure him that this isn’t a game where the person with the most pain wins.
Paternalism rules the day, or at least it rules inside the hospital walls.
I’ve been thinking a lot about control, particularly when it comes to our health. We all want it. Until the pandemic, many people took it for granted. You know how your body will work on any given day. You know you will be able to complete the tasks you need to. Your body acts as it should. You expect it to and it does.
Until Covid-19 entered our lives.
Lockdown meant — and, for many people, still means — that decisions about our daily lives were no longer within our control. People were confronted with the idea that your health is more precarious than you think it is. Which is a familiar experience for anyone who lives with a chronic condition or disability. People with long Covid are adjusting to long(er)-term symptoms, brought on by an acute illness, that science and medicine don’t completely understand yet.
Easing restrictions and the rollout of vaccines means our sense of control is returning. Slowly, because we aren’t in control of when we’ll each receive our vaccine. Seeing family and friends and spending time in places we couldn’t this past year allows us to regain some of the normality we’ve lost.
The pandemic is not over. There are people who, for a variety of reasons including a chronic illness or disability, remain in their version of level 5 lockdown. Not everyone can meet groups of people yet, even outdoors.
We are all figuring out what does and doesn’t work for us.
A combination of burnout, that arthritis flare-up, and grief meant I spent 2019 questioning everything. Add in the pandemic and 2020 was another year full of questions. This time about how to ‘do’ life when you can’t leave your house.
We’re halfway through 2021 and I am finding my way back into the world.
Slowly, ever so slowly, I am also finding my way back to myself.
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