The Realities of Long Covid
Picture that illustrates many of the tools and resources needed to live with Long Covid on a daily basis.
Picture of a bedroom scene covered with a large, white, illustrated arrow with hand lettering on it that reads, “This is what living with long covid looks like every single day.”
Some of you have been following along over the past year as I have pursued diagnosis for the disabilities that have grown drastically worse since 2021. I still have some upcoming appointments to sort things out, but so far I’ve been diagnosed with Long Covid (manifesting as small airway disease, chronic inflammation, chronic fatigue, and dead brain tissue-perhaps due to stroke) and ME/CFS.
I am still pursuing answers and treatment options, including a long covid clinic at the University of Michigan. In the meantime, I have a mish mash of treatments and tools, some prescribed, some discovered to try to deal with the daily symptoms and give me as much ability and quality of life as can be managed with these illnesses (both of which drastically reduce quality of life with many patients reporting it worse than cancer).
If I don’t do all of these every single day, I suffer more. Unfortunately, doing them all takes an immense amount of time and energy, often requiring help and leaving few resources to do anything else. Currently the list of treatments I try to do every day in order to feel ok/regain some ability consists of:
Nebulizer twice a day (seems to help with shortness of breath and stamina)
Compression boots for at least 30 minutes a day (helps with blood pooling, nerve, muscle, and joint pain)
Red light therapy (helps with pain in specific areas and just generally feels nice)
Back stretch mat for at least 20 minutes (helps with back, joint, and muscle pain)
Picture of a bedroom scene with arrows and boxes drawn on it explaining things in the scene as follows: “Hat collection for sunlight sensitivities.” “Compression boots for blood pooling and muscle cramps from medication.” “Coffee with collagen and protein to try to get more nutrients with less digestion.” “Body pillows for wonky joints and long periods in bed.” “Service dog in training to help aid with disabilities.” “Nebulizer twice a day for small airway disease” “Over bed tray for many necessities” “Adjustable bed for comfort and ease of adjustment while mostly bedbound.”
And that doesn’t include all of the daily medications, supplements, and tools I use (like the over the bed tray and body pillows) to hopefully make life better.
Living with a chronic illness is overwhelming and exhausting when we are already overwhelmed and exhausted. I value simplicity & ease and I miss them both dearly.
IG vs. Reality
As a disabled mom and reactiive dog owner it’s not alway easy to make content, but I’m trying.
I’ve been (relatively) absent from social media lately.
My life is at a weird transition point that is taking years.
Most of this has to do with my worsening disability. If you’re a regular Muddler, you may know that I deal with autism, POTS (Postural Orthostatic Tachycardia Syndrome), and EDS (Ehlers Danlos Syndrome). But lately my biggest issue has been ME (Myalgic Encephalomyelitis).
Like many who deal with ME, I am finding every day tasks (showering, cleaning, surviving) difficult and additional tasks (posting or “working” in any capacity, traveling, maintaining community and relationships) almost impossible. I recently saw a study (thanks to brilliant @jendomsick and @sunrequiem who post great resources on this stuff) that says people with ME have a worse quality of life than those with heart & lung disease or cancer. That definitely feels true to me.
I am privileged to have a financial support system and caregiver in my partner. I have access to aids like a power wheelchair, adjustable bed, and service dog that many people do not (but everyone should). While they all help improve my quality of life, none of them are able to get me even relatively close to the level of function I had just a few short years ago.
In addition to all of that, I am still a mom. While my boys are both almost adults and mostly tackling their own adventures, it’s important to me to still be a support system to them.
This is how I discovered that parenting young adult children can be challenging. My oldest (Tucker, almost 20) has been home for the past month between the end of his second year of university and the beginning of his first internship across the country. This means him and his stuff are in a semipermanent state of being scattered across my home in preparation for a 2 month stint in Mississippi, followed by less than a month here, and another move to his apartment at school…all of which come equipped with different amenities and require a different packing list.
The mental state which we find ourselves in is a similar shambles. Armed with an ADHD diagnosis and prescription, but still having difficulty staying on top of filling the RX, Tucker’s executive functioning can struggle at times. Plus he’s used to living on his own or with other young men, which are a different set of living standards than I like to keep in my home. It’s all a mess.
It’s a mess I wouldn’t trade, but it presents an additional challenge.
Finally, we still have George, the big reactive dog. While he continues to do at home service tasks every day and make slow progress around some of his reactivity, he isn’t the worry free public access dog I was hoping for and finding a care team (vet and sitters) has been an epic challenge we haven’t completed yet.
I am really hoping we will keep making (VERY slow) progress in all these areas and I will eventually be able to post more. But for now, the struggles of every day life as a disabled person who cares about other complicated creatures is taking everything I’ve got.