Coping with COVID-19

CN: Talk of pandemics, death, infections, loss of control, illness

I never thought I’d long for the days of hair-splitting definitions of the Ehlers-Danlos syndromes, or disputing diagnostic criteria, but here we are.

In less than a month from the first hints of its emergence on main stream media since January 2020 (for most of us), we are in a full-fledged world-wide pandemic of a scale I’ve never seen at least.

(I’m a middle-aged cishet normie white female in the western United States, just to clarify my POV – meaning, I’m fairly privileged, in other words, and I recognize this.)

My own state of Oregon just entered a Stay at Home order (March 23rd, 2020), discouraging any unnecessary outings and asking everyone to try to maintain physical distancing of 6 ft (2 meters) whenever possible while out.

Although not quite as ravaging as the 1918 flu pandemic yet (that lasted two years, we still have time to catch up), I feel like this one has spread faster thanks to modern air and other travel modes.

And appears to be even more virulent and lethal even than the H1N1 flu, as people can be asymptomatic longer, thus shedding and spreading virus without knowing it for longer too.

(I just heard on the radio April 14th, 2020 that we’ve had more deaths from COVID-19 in the past 3 days in NYC alone than from H1N1 the entire past year there- ack.)

And the scary thing about this one again, like the 1918 flu, is that it takes old and young alike, contrary to early reports of not affecting kids so much.

Of course, the elderly and immunocompromised among others are always harder hit. But this one does not seem to be discriminating much: we’re seeing even very able-bodied young doctors and nurses and others succumb, which is really bad, since we need them to care for the rest of us!

So it’s also quite impressive in scale and scope already, and I apologize for triggering anyone into needlessly worrying more than you already were. (Please don’t. Step back. Breathe – if you are reading this, you are still here, and are fine just now, okay? Step back into your body. We got you.)

But it’s reverberating around the world and impacting virtually everyone in many life-altering ways, some more than others. But so is the news – and life-saving information going around the world. Which may be a good thing.

Right now, in the US and western Europe (outside of Italy which was the hardest hit until recently), we are scrambling to get “ahead of the curve” and “flatten the curve“, meaning, try to get people to stop going out and mingling and spreading it so that our medical systems can keep up as it ramps up and spreads as it first did in China, Italy and Iran so quickly.

(Remember, the deaths from COVID-19 are additive – meaning they are added to and ON TOP OF the usual and customary death-rate areas are used to dealing with.)

And this is a big ask of a rather privileged population that is not used to being checked by anyone other than the military or cops. You can’t shoot the bug after all – it’s much too small!

You can’t even be certain you’ve washed and sanitized it completely away from your body and home even when you do your best: it’s invisible.

You can’t prevent someone less careful from accidentally or otherwise spreading it to you through the myriad ways we conduct our daily lives.

In other words, life as we knew it is being… canceled. Corona-canceled. 🙁

And there’s just not a lot we can do about it yet. This is causing incredible financial hardship for all but the wealthiest. Jobs are being lost, businesses shuttered temporarily or for good, schools closed, concerts and non-emergent medical appointments canceled, workshops delayed or canceled, and so much more.

Life is grinding to a halt while we all try to shelter in place with or without government mandates to do so. (Staying home, and only going out for essentials: mostly groceries and urgent medical needs.)

The disabled and houseless are being hit the hardest, as we are dependent on others to provide for our safety and well-being.

For a population like ours (of chronically ill patients with EDS and HSD) who are already prone to baseline anxiety as I’ve written about before, and seriously crave routine (a lot of us are autistic I’m finding), this is a HUGE challenge, as we face the unknown.

And even if some of our anxiety is pre-existing, based on our neurology and more as described, some of it is new and quite founded, based on so many uncertainties in our lives now.

How will we pay the mortgage or rent? How will we eat now that the kids are home more and work is canceled? How can we get groceries when the delivery slots are all taken by newly quarantined abled people? How will we afford all the medical co-pays and supplies we so often need more than most?

How do we get medical care after losing our jobs – to which it’s so often tied in the US? When can we see our doctors again for non-emergent appointments? Our counselors? Etc.

And then, to top it off, many of us are… immunocompromised, no kidding. So this adds a layer of very real concern about being out in the world – like even more than we had before.

Those of you who are immunocompromised usually know who you are. If you don’t, I suspect you if you get sick easily and often, and struggle to shake off all bugs either quickly, or much at all. You may even end up in the hospital every time you get a simple cold or other bug of any kind – virus or bacterial.

Or you may always end up with pneumonia at the end of any bronchial illness. Or dally with sepsis now and then, or more, sadly. (Those with PICCS etc may really struggle with this.)

As I’m preaching to the choir, I’ll sum it up by just saying: if you thought we had a lot to deal with before COVID-19, oh boy do we have a lot to deal with now.

So, since some of us were and are already overwhelmed with life “BC” (Before COVID-19), I’d like to toss out some tools for coping with it.

Tools for Coping with COVID-19

In addition to all the things I list in my post on Anxiety and EDS (acupuncture, Reiki, massage, meditation, breathing, yoga, epsom baths, etc.) for staying calm, I’m going to share some resources I’ve come across as this thing has unfolded.

Wrangle your mast cells!

Most people I’ve met with any form of Hypermobility Spectrum Disorder or EDS have comorbid mast cell activation disorders (MCAD) of some kind too. That is, our bodies act like we have loads of allergies even if we don’t test positive for any. And will act like we’re having a reaction to things you wouldn’t normally react to: sunlight, vibration, scents, chemicals, strong emotions and especially stress.

So we always need to wrangle (subdue and stabilize) our mast (or “allergy”) cells as best we can. But my gut (and anecdata) tell me that the more locked down we can keep them, the better we will fare with any infection, much less this one. (Think of MCAS as a sort of amplifier of any infections or allergies.)

Quercetin is a great over-the-counter natural mast cell stabilizer, and alas, there is a run on it now, as word got out it may help stave off cytokine storms triggered by COVID-19 even in “normal” people. But it’s starting to be restocked as the initial demand wave subsides.

This post by Dr. O’Hara has several other tips and tricks for anyone with over-active mast cells, diagnosed or not. Except I would counter her advice to not wear a mask now (April 2020) and recommend you do wear one: they can help us slow down the community spread by catching your spittle and breath, even if they aren’t 100% effective (either direction).

Wash your lips off!

Okay, I don’t mean literally! But, if you live in an interior apartment with no balcony or porch or garage as I do, and so can’t leave anything outside to “disinfect” with time or sunlight, don’t panic. Yes, it’s a bit trickier and harder to literally fit in, but it can be done.

Just try to designate an area near the door for setting everything new you bring in at first if you can. (Yes, kids and dogs will complicate this a bit, you may need a baby gate or other similar barrier to help.) Those with garages and porches are luckier here.

And then wash all the smaller grocery items you can that are practical. (Plastic or glass bottles, cans, fruit, solid vegetables.) And try to wipe down all the rest, such as cereal boxes. Ideally with alcohol, but alternatively chlorox wipes, and even Hydrogen Peroxide solution sprayed on and left on fruit could work.

Some have taken to removing the inner plastic bags inside cardboard boxes of crackers or cereal and discarding the box. Or emptying the contents into a Tupperware or similar container with a label. (Be sure to label clearly if Celiac! And include the date so you know when to toss them later if needed.)

But most everything else (including and especially frozen foods) are wrapped in plastic which we can wash. Do you have to use alcohol? No. Just wash the item thoroughly with dish soap and warm water for 20 seconds, just like you should wash your hands now. (If you can’t clean a product or item, then just be sure to wash your hands thoroughly after handling it.)

The trickiest items are fresh vegetables, especially leafy greens you don’t plan to cook like lettuces and cabbage for fresh salads. I would peel off the outer layer or two, and then thoroughly rinse anything I eat, rubbing the surface of the leaves under the running water if you can, just like when rinsing your hands. (Yes, this is water intensive.)

Or maybe forego storebought lettuce and cold salads for now, and opt for steamed and other cooked vegetables until the worst is past. Even better: grow your own if you can. (I know, not all can. I know.)

Disinfect your phone and keys.

A lot. Think about it – it’s the one thing most of us handle THE MOST, and almost all day long, and after touching everything else.

So if you’re unsure if you cleaned all your other groceries and other items sufficiently, then wash your hands again and clean your phone with 70% or better isopropyl (rubbing) alcohol. (Moisten a papertowel or clean plain tissue or toilet paper with the alcohol and wipe down the item.)

Ditto any keyboards you use – computer, tablet, notebook, mouse, TV remotes. (Make sure they are off when you do!) I would do this twice a day if you can – morning and evening just like brushing your teeth to help remember.

Don’t touch your face!

Ha. Sure Jan. Easy for you to say. Because no, actually, it’s not easy at all. Everyone is prone to touching their face during the day. The most vulnerable parts being the eyes and nose, where the virus will dive into our mucus membranes and start chowing down. (Replicating.)

This is why the CDC has just recently finally urged everyone to mask up – not because it’s 100% effective, but anything that can help us slow the spread (and not touch our faces) is going to help.

Just like physical (aka social) distancing is doing in the places that are enacting it. (I’m pleased to know Oregon is well ahead of the curve, enough that we just sent 140 spare ventilators to NYC recently, Saturday April 4th. Good job everyone! ) Masking helps slow the spread a bit more.

Stay connected.

Thanks to the internet (where you’re reading this) and cell phones, we are so much better equipped to stay socially connected, even while staying more physically distant than ever before. (Just ask any military service person how important that is.)

I’m so grateful for my online connections (and all of you) on Facebook and Mewe and Twitter at this super challenging time.

I just lost my beloved elderly auntie recently (to old age with EDS at 95 thankfully, NOT COVID-19!), and I wasn’t allowed to travel back to her home for her funeral, which was “Corona-canceled” anyway. (They “Zoomed” her burial, go figure.) We may try to hold a memorial later, but TBD natch.

I will admit, it was terribly hard not being able to get any hugs that week, especially since I live alone. I don’t even have a pet to snuggle any more for now. (I need more income to support having one.) That was the hardest part for me, and still is.

But I got plenty of love and kind thoughts online and by phone which I deeply appreciate. I hope anyone else who is struggling with the loss of a loved one to any cause right now is finding the support you need, some how, some way.

And especially those who lose someone to COVID-19. It’s so very unfair! And devastating – it takes people so suddenly!

Stay Safe.

I mean beyond the obvious physical ways, already covered above. (Hand washing, distancing, masking, etc.) I mean, stay safe in your homes and places of work, as best you can. Not all of us are in safe spaces. Some are stuck living with abusive partners, or dependent on less than kind or careful care-takers.

Or working for abusive bosses or in unsafe environments: Caretaking without proper PPE and masks, dealing with people who are in denial, more. I’ve seen some real horror stories, and my heart breaks for those in such unfortunate situations.

For those that can’t stay safe easily, I don’t have any good tips to share, I’m so sorry! Other than try to cultivate some kind of connection with someone else if you safely can to help ease the stress. Or find a local domestic violence shelter. But I know that’s not always possible. (I highly recommend Blanchet House and Street Roots for Portland area houseless peeps.)

Lastly: do all you can to avoid needlessly injuring with EDS and MCAS (ha). I know, easier said than done in many cases.

But if you know that sleeping on your side aggravates your TMJ and takes your shoulder out for example, making you need to seek care, maybe resist doing so? (If you can.)

Or if eating tomatoes or drinking alcohol sends you into anaphylaxis, don’t do it! I.e., be responsible for yourself and wise-minded to the best of your ability.

Including eating a healthy diet, right? Not giving in to emotional or stress eating if you can help it, or gobbling sugar. I promise it will backfire!

(Don’t be too proud to ask for help obtaining healthy foods if you’re stuck- there are lots of Mutual Aid groups arising all over, at least in the United States. You are worthy of help, I promise!)

Seek help and take breaks.

I pray that everyone can at least have a therapeutic outlet of some kind, wherever you are. Life with the Chronic Constellation was already hard enough. Even for the “walking wounded”. (People who may not “look” disabled or sick on the outside, but live with loads of invisible pain and other issues we can’t see.)

It’s extra hard with the threat of COVID-19 on top.

Now, we can’t be seen medically for anything but the most emergent issues, or COVID-19. That procedure or dental visit we put off while waiting to find a doctor to approve it is now indefinitely delayed anyway. (Even if we have the funds.)

Or we can’t get diagnosed for another year. Or we’ve just lost the coverage we had on our last job that just ended suddenly as the shop folded or we were laid off. The list goes on…

Thankfully there are increasing numbers of online counseling and therapeutic services. Please don’t be too proud or stubborn to reach out to someone okay? This bug doesn’t discriminate and can take down the toughest of us, alas. Yes, even mentally and emotionally. I’ve seen several very competent doctors and nurses in tears on the internet and news.

I myself have randomly burst into tears since this all began – even before my auntie died. (And especially after of course.) I’m better now, but… every once in a while it all gets to be just a little too much. (Which is partly why this post took SO long to get out!)

So I’ll turn off the news and either go weed my kale patch, or watch a silly movie. Or play online Scrabble or cook while listening to ABBA or some Mahala Rai Banda.

Thankfully I have many super talented friends who have also been performing online via Facebook Live or Zoom too. Many for free or by donation.

Thank God for all you artists and musicians!

It’s okay to tune out if you need. You do not have to know the latest stats at all times. You only need to take care of yourself and your family. No one else. And that’s okay.

Allow yourself to grieve.

We are all grieving now whether we know it or not – the loss of our lives pre-COVID-19. We’ve temporarily lost much of our freedom: to move “freely about the cabin” of Earth, interact and mingle, eat freely what we want when we want (if we could before), shop, work, worship together (in person), and so much more.

Even if it’s not forever, it will be for a fair while (at least a year or two likely). And, being invisible, it will always be lurking “around the corner” until we have either fully quashed it, or successfully vaccinated sufficiently against it. (Both are a couple of years off anyway, sorry.)

You have the right to grieve your former life. And be angry. And struggle to adjust. Just try to do so safely (don’t injure yourself or others).

And then turn around and forgive and love yourself as fully and deeply as you can. Even the most abled among us are challenged right now.

Being disabled or ill to any degree, even if not as obvious as some, only amplifies this challenge.

Being a person of color, or a woman, or LGBTQIA++, (or any combo of the above), does so even more.

Give yourself some credit. Then give yourself some more – you’re going to need it.

Best of luck and health to you at this very challenging time,

Jan April 21, 2020 (it took me over 2 weeks to get this post done too, phew!)