Today I have had Long Covid for 1000 days.
I am commemorating it over cake, and wanted to tell you about it.
Isn’t New Year’s Eve just such a fitting date for a life anniversary?
Even more fitting is that today I am still in the same crash I’ve been staving off and responding to for most of December. My brain is lethargic and foggy, my body has been aching for ages, doing daily tasks feels like I'm trudging through mud and my tonsils are all inflamed again right in time for next month’s scheduled tonsillectomy. I've spent most of the summer holidays in bed, or on a chair feeling a strong need to be in bed. I still have 3-5 headaches or migraines most weeks, lottery as to which, and have the pain nudging on the edge of my brain as I type. Just this month I've learned that my body can no longer fully clear mosquito bites, and that to manage the heat of summer I require more medications on top of my usual regimen.
I can still do more than I could when I first became sick on the 6th of April, 2022. My first bout of Covid-19 was incredibly mild, with my only real symptom being an absolutely crushing fatigue that never went away. Over the next few months as Long Covid reared its head I re-developed severe migraines and the POTS I'd been trying to get assessed for some time got worse. My POTS was finally diagnosed in March this year, after 8 years of telling several doctors it was a problem that we absolutely could not screen for with a simple two minute standing blood pressure test! My immune system already wasn't great - I've had ME/CFS since 2015 - but it was suddenly far worse, the ongoing effects of post-viral Covid-19 causing immune dysfunction and a real shit experience with every cold I caught. Influenza was a particularly rough one to recover from, even with vaccination on board, thanks to that immune dysfunction! Since developing Long Covid I've also had chronic recurring strep throat, pericarditis, and more.
Through the last 1000 days I've been incredibly privileged to maintain a clean bill of mental health. This has not been a theme of my life until recent years, but it's something I'm forever grateful for. I worked hard to get here (which really merits its own essay, but I wouldn't be here without surgical intervention for the hormonal mood disorder I had). However, others with Long Covid can really struggle. I was equipped with tools from over a decade of counselling and having already radically accepted my dynamic and shifting state of health, but not everyone starts there. Many people who newly develop Long Covid have to process a lot of grief about suddenly being disabled.
It's a more common experience than anyone expects, disability, and there is a commonly held, naive assumption that we live in a society that supports all disabled people to do okay. That isn't the case at all. People with Long Covid try doggedly to get support, and when they can't their whānau and loved ones will try for them. But for all of us, and everyone else with an ongoing chronic and disabling illness, we are left out of disability support options. Even though we have the same needs as other groups who are covered. I have watched and supported countless people, previously able-bodied, process the immense feeling of betrayal when they've realised there's no support at all. I was told once by someone whose opinion doesn't really merit attention that if I was truly "that disabled", the government would have given me a Zimmer frame. It got a good cynical laugh out of me before I hit the block button. People with Long Covid are self-funding and at times fundraising for equipment we require to access society again, there is no state funding for us and the budget that does exist is so small that only the very bedbound can access it.
These access needs sadly, still, 5 years into the pandemic, include clean air, accessible and affordable RAT testing, people isolating when sick, and access to high quality vaccines. It is common experience to relapse, too often severely, with subsequent Covid-19 infections. If you are bored with the pandemic 5 years in, or have even forgotten it's happening, good gosh I'd love to have the privilege you have. Covid, influenza, RSV, novel pathogens, even just colds all still hold real risk for us whose immune systems are wonky and we all deserve the protection we need to participate in society with you.
Ultimately, Long Covid is real. Stigmatised (though not as much as ME/CFS), but real. Research has been slowing, but has also been identifying biomarkers present in those of us with it, and genetic risk factors. We still aren't clear on the mechanical causes but we do know that mitochondria in people with Long Covid do not store energy as effectively. There are still no peer-reviewed, safe and accepted treatment options other than rest and pacing. It can be prevented by preventing and limiting Covid infections themselves through vaccination, but it's also recommended to rest intensely with every infection. Just because you've recovered fine from Covid-19 once doesn't mean you're guaranteed to another time. It can cause or exacerbate a number of secondary conditions, which can be incredibly invasive for your life.
I wish I never got sick like this, and I've fought hard not to lose everything I am to being chronically ill. My child doesn't often get the best of me because I'm not always well enough to do more than only meeting her absolute bare minimum basic needs, though thankfully she has family and community filling the gaps. I'm still trudging away at my Master of Health Policy, writing essay after essay and preparing to write my dissertation on inequitable access to disability support services in Aotearoa and the collateral damage that causes. I attend classes from my bed with my eyes closed and relentlessly use disability support accommodations for my coursework, and I hope my work in this space continues to benefit my Long Covid community long into the future.
If you want to support people with Long Covid, we need equitable access to support, community, and care. You can:
Make financial donations to organisations who provide chronic illness, Long Covid, or ME/CFS advocacy and peer support in Aotearoa (who do not receive state funding).
Write to your local MP calling for increased Long Term Health Conditions funding (Te Whatu Ora) for all chronically ill people, renewed access to free RATs, stronger requirements for clean air in schools, workplaces, and community spaces, and renewed funded access to PPE for us and our whānau.
Wear a mask, and/or run air purifiers with HEPA filters in your shared spaces. If they're stacked in a storage cupboard, get them out. If the filters need changing, get onto that. They really make a difference.
Help out your community members with Long Covid. Dog walking, rides to gentle outings, babysitting, maybe a load of dishes every so often are all massive and gratefully received gifts. (Do ask the individual first!).
Stay away from other people when you're sick, but also look after yourself when you're sick. Avoid developing post-viral illness yourself with radical rest (that means don't go straight to the gym after...) and avoid getting others sick to protect them from Long Covid, ME/CFS, other post viral conditions, or relapse.
Day 1,123 for me. May be able to bake a cake.
Thanks for this. I really admire your continuing advocacy for us.