You were active, endless energy, able to think clearly react appropriately… you could work out, do yoga, hike… go to the grocery store, read a book. You were engaged in an active life, and you didn’t give the mundane aspects of life, much thought. Not until you got COVID.
Now it seems, to get to the bathroom is a massive feat, that eating is a significant challenge – how many times did you have to read this sentence, before you comprehended what it said? Do you now need an hour or more to rest, after you’ve showered? Are you struggling to think? Do small sounds send you into a panic? Does the light hurt your eyes – difficult to look at screens?
We, the chronically ill, the rare disease warriors ~ we understand
We’ve been there. There’s the spoon theory. If you’re unfamiliar with spoon theory, the brief explanation is that in life before illness, you had, endless, ample spoons to, “do life”, but now you get 10 spoons, each day, and each spoon is what you trade for a task. Taking a shower equals, 2 spoons, eating, 1 spoon, each meal, (because digesting is hard work), and going to the store is 8 spoons… oops, you’re in a deficit, and you still have, work, cooking, cleaning, childcare, classes… and no more spoons to take on the rest of your daily life.
We get it, you’re devastated and frustrated and all the insecurities and judgments from others emerge, complicating the situation.
Whether you were diligent with your masking, vaccines, testing or not, you weren’t expecting this tiny organism to wreak havoc on your life and body, yet here we are.
How do you cope, how do you keep going, when it feels as though your life is over?
Well… I relate. I was an active person, marital artist, yogi, single mother, I worked while my daughter was at school, I prepared all the meals, did all the driving, shopping, laundry, entertaining – all the life stuff, and getting my photography business up and running at full speed, as my daughter grew older. Then one day I got sick.
Just one day… I got sick – AND – I didn’t get better. My story isn’t entirely unique, many folks have experienced the phenomenon, going from, “perfectly healthy”, to enduring chronic illnesses. It’s terrifying. You’re unsure what lies ahead, you grieve for the life you had prior to getting sick. You’re not alone in this.
I imagine many folks who are coping with, “long COVID”, post viral syndrome, thought they were, strong healthy individuals, who weren’t so concerned about a COVID infection, and maybe it’s wasn’t a severe infection, but then there are lasting complications, that can last a long time, seemingly, with no end in sight.
As a rare disease patient, I see you. I recognize this suffering. The panic, the fear, all of it. The debacle of trial and error, looking for an effective treatment took years. The gaslighting from other doctors was surreal. Until you find the one doctor who can actually help you, will actually listen and take on your situation. It can be an exhausting search, to say the least.
It was once pointed out to me, during a moment of despair, (as they occur frequently in the life of a chronically ill person, when another health issue emerges), that at one point, we didn’t know what was wrong with me. Then there was a diagnosis, but no effective treatment. Then there was a drug trial and maybe another, but then? Then there was remission, and yes, the 3 loading doses of my immunologic antigen treatments were pure hell, but after that? It was remission, and rebuilding, restoring, (which is still ongoing, but every bit of improvement is a celebration!), and with that, there was some traveling and adventure that occurred, before COVID hit!
While it’s true that they’re still figuring out, “long COVID”, and no one treatment will work for every person, there’s the divine possibility of recovery. With recovery, you get the opportunity to rebuild, start anew. Hopefully you’ve had a good, patient, support system, but if not, you still emerge from this with more humility and compassion for health and well-being. It’s something that can lead to more possibilities, much like learning a new language, your perspective changes, your ways of thinking and approach to life, changes – and typically for the best.
☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙❧☙
A new reality
To add to this perspective, because I live as a rare disease patient, dependent on an immunologic biologic drug to keep me alive, and it causes me to be immunosuppressed. I got COVID in March, 2022, it caused shingles and triggered Epstein Barr virus. My brain fog has returned, but only half as dense as the brain fog I experienced from, 2016-2019. I have insomnia and cognitive and neurological problems as a result. Did I freak out? Yes. Did I calm down? Yes.
How did I calm down? I calmed down because I know what it’s like to be in a severe, downward spiral, and to improve. I calmed down because I already have an excellent, neurologist, hematologist, immunologist, rheumatologist and of course, a functional medicine doctor. they’re tackling this, because… well, not only are they incredible specialists, but I’m a pain in the ass patient!
Seriously though, there are more resources. I found a virtual, long COVID group, and they have a ton of resources. Everyone in varying stages of recovery and illness. There are more clinics opening every day!
The best thing I have to offer, is to reach out, reach out to the ones who will and can relate, you will find a community of folks who can support you and you them, as good days and bad days don’t hit us all at the same time. One of my favorite philosophies comes from my days of working with adolescents in, residential treatment, in the, chemical dependency program – I got to take them to weekly AA meetings. Taking things one day at a time is crucial, (sometimes it’s 10 minutes at a time), but my favorite prayer, the serenity payer…
It’s a marathon, not a sprint, yes. But there is hope on the horizon, and there will be people who listen to you, believe you, and support you. Stay hydrated, follow a good diet. Make sure your support team puts their self care first, because, nobody wants a depleted healthcare or support team!
Chronically Fabulous Warriors 
Great post!
LikeLiked by 1 person