Fitz, our little cuddle gremlin

It's my “Covidversary” and I'm focusing on Fitz, the pugalier (pug x cavalier) we just rehomed, who in just 10 days has been such a boost. My body and my brain are basking in the new love we have for each other. It's been a tough couple of years, but I'm so lucky to have supportive family and a partner who have been so devoted to my wellbeing. They have never questioned the reality of my illness, and my new disability.

Three years ago today, it was a Friday afternoon and I was at the small wooden desk I bought after moving into my partner's place before lockdown. I had a strange headache I'd never had, one right behind my eyes. I tried to continue working, but after an hour or two, I was in bed.

I only realised while in bed I might have Covid, as I had none of the symptoms so widely announced on posters and on television.

I was in bed for about a week. It felt a lot like a bad flu, without a fever. Turns out I never got the symptoms that would qualify me for a PCR test. After about 10 days, I was able to venture forth, I remember because the cherry trees near the football fields in the park were in bloom. I believe it was Easter. I thought I was better.

But I have never recovered. Among other symptoms, I've struggled for three years with pain, disrupted sleep and “fatigue”, but no, the word fatigue doesn't do it justice. The life-force has been sucked out of me. I've dealt with massive bed-bound relapses, sometimes triggered by my menstrual cycle, other times triggered by stress, or over-activity. (And over-activity could mean walking to the street corner, or cutting a butternut squash.)

I've learned that our medical system does not treat life-limiting chronic illnesses like Myalgic Encephalomyalitis (ME), Fibromyalgia, Lymes, Pernicious Anemia, or auto-immune diseases, which most commonly affect women, with any of the seriousness it dedicates to diabetes or cancer. We are mostly on our own. It seems harsh to say, but this is the lived reality of so many.

In a way, I'm “lucky” to have gotten sick with millions of others, with the same virus as a trigger. I have found support in the Long Covid community. Literally all of the diagnoses and therapies that I've benefitted from would not have materialised without help from other patients: encouragement to ask for more, to not accept the little help or investigation I've been offered.

But I owe an even more massive debt to chronic illness communities (ME in particular) and the disability community, who have been here for decades. And I've realised how ignorant I was to how our society treats the nearly 1 in 5 people who have disability that affects their daily lives. No longer.

Three years is a long time, enough that I feel a completely different person. I often feel isolated and alone. I have maintained most of my friendships, although it hasn't been easy.

I am getting better, at a glacial pace, or perhaps at the pace of the muddy Mississippi. (To focus my mind, I often imagine myself floating in an inner tube in a slowly-moving river, floating, swirling, bumping into obstacles, getting caught in eddies, tangled in the brush, beached on rocks... but then eventually rejoining the flow... The flow towards recovery.)

I'm still getting diagnosed for stuff we could have figured out years ago, if the medical system took chronic conditions disproportionately affecting women more seriously. I'm still having to do deep dives into medical topics, order private blood tests, and seek out help outside of the NHS. This will be my reality for a while yet.

And as I do so, I wonder what happens to those who don't have the moral support, energy or financial resources to do this? We know from the pandemic that this government is ok with disabled people disappearing and dying. How can we as a society allow this?

I wish that this pandemic (which is not over) could be a watershed moment. But in this political, social and economic system, I know this is naive. And “progressives” must understand — just as our institutionalised racism, sexism and transphobia are being called out — our ableism literally destroys lives too. In building alternatives, we cannot afford to leave one in five people behind. And we need an “intersectional” understanding of disability and health — how social inequities strongly intersect.

From my inner tube in the river, I have limited energy to be the activist I always have been. I even have limited energy to follow debates and comment. But I'm still here, watching, learning and loving.