Some Coping Approaches for COVID-19

I know folks are feeling scared and overwhelmed with the prospect of social distancing, isolation, possibly even quarantine. Here’s a missive from someone who has experience being housebound. I’ve been mostly housebound since sometime in 2017. As of this writing, I have not left my home at all since October 2019. I need help with the functions of daily living, and have had a personal care aide since February 2019. I get by with the help of friends. It’s OK. I’m OK. But being OK with it didn’t happen overnight. I’m hoping that some words of wisdom from experience might help soothe your soul just a little.

Feelings

Let’s start with feelings.

It’s OK if you feel trapped in your home. If you’re mad that the game was cancelled. If you’re upset that some stupid virus is running all your plans. If you wanted to visit your father, but it’s not safe. If you’re scared. It’s OK if you desperately want to control your situation, and that of people who you love. Its OK if you like being at home and escaping the rest of the world. Its OK if your introverted self sighs a big sigh of relief.

So much of who we are can be wrapped up in our obligations, our activities, roles, identities, that stepping out of them can be uncomfortable, even anxiety producing. There can be very real sadness, disappointment, grief, when we can’t do things we were looking forward to, like a concert, movie, trip. And a whole different kind of distress when we can’t participate in milestone moments for our loved ones, like funerals. Some of you are going to miss graduations, Mother’s Day celebrations, birthday celebrations, weddings. It’s going to be hard.

All your feelings are valid. And the more you pay attention to them, say hi, feel them, name them, and move toward some imperfect acceptance of them, the easier everything is going to be. I promise. Also, I’m not saying its going to be easy.

It stinks.

Also, we can do hard things.

Photo of a dresser-scape, including a sign that reads "we can do hard things."
Photo of a dresser-scape, including a sign that reads “we can do hard things.” Also in the frame are a TV, a snake plant, a large painting of a woman holding an anatomical heart, and a wooden chest displaying special objects.

Humanity and Vulnerability

The next thing we can do is remember that we are human. And that part of what’s happening right now, our move toward social distancing, might feel like it flies in the face of our humanity. We were meant to connect, to hug, to play sports, to go to concerts. And we’re not doing that right now. It feels uncomfortable.

But we’re doing something else that is very human, which is taking care of ourselves, our loved ones and our communities. Nesting.  Pulling our loved ones close. It just might look different than how were using to doing it. And that can feel vulnerable.

Here’s the thing. We are all vulnerable.

On many different fronts, all the time, even if we spend our days pretending otherwise and putting on a mask (literal or figurative). We are. We’re vulnerable to heartbreak, to loneliness, to loss, to joy, to being tickled, to love. And every one of us is vulnerable to getting sick. And while we can, and should, take precautions, we can’t control if we get sick. Just ask the millions of folks with cancer, with chronic illnesses, with congenital conditions.

We can’t control it.

And if we become ill, it isn’t our fault.

So maybe you’re isolating because you don’t want to get sick, or further compromised conditions you already have. Maybe you’re protecting others. Maybe you are sick and you need to quarantine. You can do this.

We don’t need to do it alone.

Most of us already know something about staying connected to folks we are physically apart from. We have more communication tools than ever. Social media. Texting. Messaging. Email. Mail. Video calls. Stay connected to folks you care about, even if you haven’t been in touch for a while. It’s OK to break the ice with a text that says, “Hey. I know it been a while. But I wanted you to know I’m thinking about you.” It’s OK if they think you’re a weirdo popping up out of nowhere. But they also probably won’t.

In my experience, community and support can come from unexpected places. When I became much more seriously ill, some of my regular friends just kept on keeping on right next to me. Some stepped up in big ways. Some close friends totally ghosted me and disappeared. Some old friendships were rekindled. And amazingly, some new relationships began.

Take Stock

So great. We have some feelings and we are staying in touch with our people. But there are so many practical things to manage! Figure out your tools. Slow down and make a list. I like to go back and asterisk the ones that are actually critically important. But everything is important! Maybe. But sometimes things just can’t get done. Focus your energy and resources on what matters most, and what needs to be done first. I never asterisk more than five things. I’ve even written lists of things I am not going to do! Liberating.

Don’t reinvent your organizational systems, unless you have none at all. Then, do the most simple thing possible and make a list in the place you are absolutely most likely to find it when you need to add to it, and find it when you need to reference it. This is likely your phone or a notebook.

Come back to this again when things change, or any time you start to feel overwhelmed. Sometimes just getting it out of your head is really helpful.

Needing Help

Here’s where you start: figure out what you need. Sometimes this is hard. We just feel icky. Or panicked. Afraid. Overwhelmed. Take a few deep breaths and notice how you feel. Then see if you can find the answer. Maybe you need to write. Maybe you need to talk it out with a friend.

Sometimes the is obvious. You need milk. But you can get even more precise, like I need a gallon of either 1 or 2% milk by 10 am Thursday so I can take my pills.

Next, figure out if it is something you have the power to take care of yourself, or if help would be a good thing.

We might need help. Dammit.

What?! I’m independent! I take care of myself. I don’t want to be a burden to anyone else. They have their own things to deal with. They probably don’t want to help me anyway. What if they say no?

Be willing to ask for what you need. This is super hard for a lot of people, and it goes against the grain of our over culture. But it’s exactly what is necessary in community. And most of us say it’s what we want others to do. We want them to ask us. So if we’re the ones in need, our job is to ask them.

Community and Mutual Aid

Identify who you could ask for things. Some folks start here with the answer of “no one.” While I believe this answer can be true, I also believe that it is very rare that it is true. Think expansively. This is the time for the wild brainstorm. The list of everyone you know who isn’t a jerk. Even if it makes you uncomfortable. Once you have that list, you might want to start thinking about ways those different people could help. Over on my Chronically Ill Viral Preparedness page I link to a great little document called Podmapping for Mutual Aid by Rebel Sidney Black.

I have an incredible network of support, and I know I can just throw out something (I need someone to take a package to the post office for me by Friday) and someone will raise their hand. But I also know more specific things about some folks that can make it easier to target my requests to the right place. Like, several folks I know go to the grocery store 3-5 times a week. Those are the folks who can keep an eye out for the specific items I need that are getting hard to find. They might do better than my regular grocery shopper.

I also know who I can turn to for emotional support, and that I can ask for what I need there. I know who I can text and say, hey, I’m having a hard time. Do you have time to connect on the phone for 15 minutes and just listen?

A couple of years ago, a friend shared a poem with my that was written by Tad Hargrave. It really helped my shift my thinking:

how do you create community?

how do you create community?
i do not know
a hundred ways
a thousand ways
but
how do you kill community?
I can tell you one
sure to do the job.

be self-sufficient.

always have enough
always have it together
always be a giver
always have all the tools you need
never need to borrow a sewing needle
never need a cup of sugar
never tell anyone you’re breaking down
never need anyone

your pride
your insistence on competency
your unwillingness to be a burden
on us
when it is the proper time for you to collapse
may be the end of us all
knowing what time it truly is
or knowing how to know the time at all

you
needing our help
being unable to continue without it
you
not knowing
how to do everything
creates the occasion
for the village to reconstitute itself
and know itself again

Tad Hargrave

 

And let’s talk a minute about need. Need is not a magic threshold you have to hit before you’re so desperate that you have no choice but to ask. Try to set that bar closer to when you have a longing. A sense of something. A realization. When you start to worry just a little. This is not an exercise in stoicism. A major form of self-care is not practicing stoicism.

Helping Others

If you looked over that podmapping exercise, you would notice that it isn’t just about who can help you. It’s also who you can help and how. Do something for someone else. Are the stores out of toilet paper, but you maybe went a little overboard on preparing? See who you know why needs a few extra rolls. Are you coping by baking, and aren’t sick yourself? Offer some of those baked goods to a neighbor. Are you going to the store? See if someone needs one or two things you can pick up.

If people in your life have identified themselves to you as being high risk, or have needed to isolate or quarantine. ask what they need. Then listen.

Healthy folks aren’t the only ones who can be helpful. NO, if you’re very ill in bed on a ventilator, you have absolutely no place helping others. Your job is to just accept help as it is offered. But even those of us who are compromised are often able to help others in some way. I’m reliant on others to do my shopping and wash my dishes. But Just last night I was able to talk with two folks on the phone and hold space for their grief and fear about their elderly parents. I’m a great problems solver, and disseminater of information. I have a car I can lend out when a friend needs one. And I have a surprising number of cupcake tins. And a Bundt pan. Please don’t buy a Bundt pan. Borrow mine.

Self-care

I’m not talking about Instagram-influencer-capitalist self-care. I mean what keep you the most OK you can be. Eat good food if you are able. Drink water. Take a breath. Tune out of media and conversations that are unhelpful and fear mongering. Exercise in a way that is appropriate for your situation. Stretch. Read a book. Tune out for a while with TV or a movie. Get clean. Change your clothes. Ground into your body. Laugh. Play a game.Spend quality time with your pets.  Listen to music you love. Cry if you’re sad or scared.

This is also a good time to figure out what some self-soothing tools like like for you. We know that one of the best ways to get our nervous systems to calm down is to regulate with others. You might still have that option if you like with loved ones and no one in your household is ill. But, especially if you like alone, this is much harder. Give yourself a hug. Deep breaths. Find a mantra. Hug a pet. Hug a stuffed animal – even if you’re an adult! No one is watching.

This will get more real

Rinse, and repeat all things things as needed. We’re still at the beginning of this pandemic. Many of us will be, but not everyone is going to be OK. And remember, there are lots of effects playing out, like product shortages, threats to small businesses, impact on elections, etc. Lots of things will be hard.

When folks who are at high risk are afraid, they have good reason to be. Don’t rush to reassure or try to make it better. Don’t gloss over their feelings because of statistics, or because the idea makes you uncomfortable. Instead, try listening to their pain and fear if you have the bandwidth.  Just be with each other.

Take all the precautions you know by now are appropriate and necessary. Do everything you can to protect the vulnerable folks in your life. Wash those hands. Ask them what precautions will make them feels safe. Notify them if you come to find out you were exposed, or if you become ill.

Do not over buy things you don’t need that others do, unless you’re buying them specifically to make them accessible to folks who need them. Lots of folks use masks and alcohol wipes in their daily lives. Many of us have dietary restrictions at play when we are faced with empty grocery stores.

And the bottom line, is we just can’t control what happens. All we can do is get honest with ourselves and out loved ones, and figure out how we do the best we can to make it through together. It’s going to take all of our big hearts and deep breaths.

 

You might also be interested in:

For more thoughts on how we can support each other in hard times, check out some of my other blog posts:

Supporting Each Other: Part 1 – learn some tips on who you can dump on when someone’s going through a hard time.

Supporting Each Other: Part 2 – tips from Celeste Headlee on listening

Supporting Each Other: Part 3 – thoughts fro Heather Plett about how to hold space for each other

For resources on chronic illness living, and disease-specific information on MECFS, check out my Chronic Illness Resources page.

Reading List: January and February 2020

Photograph of the cover of "The Water Dancer" displayed on a tablet.
Photograph of the cover of “The Water Dancer” displayed on a tablet. The tablet sits on red sheets.

My brain has been pretty good so far this year, which is always just a roll of the dice. I’ve probably been able to read at some point every week. I always count my books in the year I finish them, which is a little bit of a cheat, since I read the bulk of my first book this year in December. But, at least I’m consistent.

I don’t make up rules about my reading; I’m grateful to be able to read anything, and what I can read changes based on my cognitive abilities. But I do try to be conscious of whose voices I read. Part of that is about making sure that I’m reading books by BIPOC (Black, Indigenous, People of Color) folks. If you’re a white person who reads, and you aren’t currently paying attention to this, I recommend you do an inventory and some noticing.

Here’s my list so far this year:

On The Come Up by Angie Thomas

I’ll admit, I didn’t love Angie Thomas’s second novel as much as her first. But it was still a good read.

Bri is a 16 year old Black young adult with big dreams of making it as a rapper and changing her future, and that of her family. She’s living in the shadow of her deceased father, who was a local rap legend. She idolizes him, yet also wants to stand on her own, and be seen as her own person. Her dreams are big, and the kind that others often brush off as impractical.

Her voice is her power, but it is also a thing that can get her into trouble. Being a talented Black woman being bussed to a predominantly white school creates a lot of opportunities for conflict and misunderstanding.

Her Aunt has her back, but makes a living as a drug dealer, and affiliates with a gang. Bri wants a world where her aunt has a different life.

Hey mother and brother and friends are there for her, but of course they each have their own agendas and opinions.

Bri isn’t going to let anyone hold her back.

4 out of 5 stars (4 / 5)

 

The Water Dancer by Ta-Nehisi Coates

I was excited to read this, and encouraged by a friend who raved about it. The first couple of chapters were hard for me, and might be harder for folks with more brain fog. But I’m so glad I stuck with it.

I would describe the book as an imagined story of slavery and the underground railroad. It is heavy and magical. Full of intrigue, spy craft, analysis of power and inequity. A deep dive into slavery, and to emerging magical abilities.

I’m not sure what else I can say, I think it’s better for the reader to see it unfold.

It’s definitely one I recommend, and my only 5 star rating so far this year.

5 out of 5 stars (5 / 5)

 

Notes to Self by Emilie Pine

I love memoirs. I don’t generally like collections of essays, just like I don’t like 22 minute television episodes. This was deeper than some, which I appreciate. But something about it didn’t quite capture me. I love that it dove into topics that are real, hard, and not often spoken about, like addiction, sexual assault, family trauma, infertility.

“Publishing these essays has not made me a different person. I still listen too frequently to my inner critic. I still get angry. I still get afraid. But in writing about all the things I felt I could not say, in breaking the unspoken rules of shame, I have changed how I tell my story. And in doing so, I have learned that breaking the silence is not about bravery. It is about what we choose to do with our vulnerability. Vulnerability is not one thing, healing is not one thing, authenticity is not one thing; they are individual, and they are complicated, and they are radical.”

But I tend to seek out those stories, and I guess I’ve liked how others tell them a bit better. I read it partly because of Glennon Doyle’s recommendation, but it was a little disappointing. If you haven’t read much in memoir form on those topics already, you might appreciate it more.

3 out of 5 stars (3 / 5)

 

So B. It by Sarah Weeks

“Another thing I found out right around that same time is that not knowing something doesn’t mean you’re stupid. All it means is that there’s still room left to wonder.” – Heidi

I like to read some young adult novels once in a while, as they can be easier on my brain. This was such an interesting ride! A young teen, Heidi, lives with her mentally disabled mother, and survives with the help of a kindly agoraphobic neighbor. Heidi has a lot of questions about her history, but her mother has an extremely limited vocabulary, and can’t answer any of them. A quest for those answers, to know who she is by where she came from, ensues.

4 out of 5 stars (4 / 5)

 

The Moment of Lift: How Empowering Women Changes the World by Melinda Gates

“If you want to lift up humanity, empower women. It is the most comprehensive, pervasive, high-leverage investment you can make in human beings.”

The Moment of Lift was a major player in my library roulette game over a period of six months. I put it on hold, got it, they took it back, I put it on hold, go ti, they took it back, repeat. Maybe six times. I am glad I stuck it out.  It is denser reading than some, so brain fog folks beware.

I do not know how to describe or summarize this book. Part of it is a memoir of Melinda’s life, including her childhood, time at Microsoft, and relationship with Bill.  Part of it is a story of how she, and Bill, have decided what is important to them. Part of it is a story of privilege and humility. And part is a story of the very real impacts of changing women’s access, education, resources and social standing changes the world.

Some of the anecdotes really stuck with me. I appreciated the ways in which Melinda learned that people know more about their place, their community, and what appropriate solutions are than she ever can as an outsider. I enjoyed the stories of when The Gates Foundation chose to allow scope creep in their funding, because they discovered the problem and solution were not what they thought.

My favorite story was at the end of the book, and since I don’t have it here to reference it, my telling will be questionable.  But the gist of the story was a series of learnings in attempting to work with female sex workers in India to reduce HIV transmission. One learning was that condoms weren’t the answer, but what was really needed was a community solution to violence. The women organized a system for a phone tree that could be triggered when a woman was dealing with violence. A group of women would immediately assemble to witness and provide public pressure, accountability, and probably shaming on the perpetrator. I’ve wondered how community solutions like that might work here in the US in our community for various issues.

“When women are trapped in abuse and isolated from other women, we can’t be a force against violence because we have no voice. But when women gather with one another, include one another, tell our stories to one another, share our grief with one another, we find our voice with one another. We create a new culture—not one that was imposed on us, but one we build with our own voices and values.”

4 out of 5 stars (4 / 5)

 

All in all, it’s been a good start to the year. And I’m already into another book that’s gotten rave reviews, with a few more in the queue.

Favorite Reads of 2019

Bitomoji image of Rebecca reading a book
Bitmoji image of Rebecca reading a book. The character has a relaxed red mohawk, black framed glasses, very pale white skin, and is wearing a black hoodie, gray shirt, and black pants. She’s holding a red book, leaning against two pillows.

I set an ambitious book goal for the year. I did not come even close to achieving it.

The most important thing to know about my reading experience, is that it based on a game I like to call “library roulette.”

Almost all the books I read these days are electronic, and almost all of them come from the library. I read on a Lenovo tablet using the Kindle app, and primarily use the Libby app for managing loans and holds.

I have two library cards. Most obviously, I have a card for my local Finger Lakes Library System. They have a modest selection of ebooks, allow 5 loans and holds total at a time, and allow loans of up to three weeks. As a New York State resident, I also qualify for a card from the New York Public Library.  They have a pretty robust selection of books, allow for a total of 15 holds and loans at a time, and allow loans of up to two weeks.

The way you get recent, popular books it to search and locate, then place a hold using the appropriate library card. Putting a popular book on hold might mean a wait period of six months or more.That book then shows up ready for download whenever it becomes available. It is then magically taken away as soon as the loan period expires. When other people are waiting, you cannot renew.

No matter what the estimate says when you place a hold on a book, they show up at the whims of the library gods. So, you might have no books. Then you might have 5. In fact, this just happened to me. And while typing this, I just received an alert that book #6 has just been borrowed. Which there is simply no physical way I will be able to read.

This is not the best system for someone with chronic illness who can’t always concentrate enough to read. And it largely removes the ability to choose what one is in the mood for.

That said, the fact that I read more than 20 books playing library roulette while chronically ill feels like a win. And I’m racing the clock to try to finish On the Come Up by Angie Thomas before the end of the year.

I read a bunch of books, and that’s a thing that many of my MECFS comrades cannot do. So, I’m grateful. 

Here’s my list of favorite books I read this year. There was more fiction in the mix than usual.

Fiction: 

  • City of Girls by Elizabeth Gilbert. This is the most fun read I’ve done in a couple of years. The characters are quirky and fabulous; woman who were charting their way and participating in unconventional relationships and creative outlets.
  • Homegoing by Yaa Gyasi. This novel was recommended by Rachel Cargle, as a way for white folks to understand the generational impact of slavery. It is one of the most compelling books I’ve ever read. Her writing is gorgeous. I wrote about it here.
  • A Woman is No Man by Etaf Rum. This was a very emotionally difficult read. If you can’t deal with women in pain, I don’t recommend. I wrote about it here.
  • If, Then by Kate Hope Day. A surreal read about possible paths.
  • Swing Time by Zadie Smith. This novel takes places in several locations, and explores a number of different aspects of privilege. 
  • Mr Penumbra’s 24 Hour Bookstore by Robin Sloan. Fun! Nerds! Books! Secret societies!
  • The Library Book by Susan Orlean. I wrote about it here. A strange story about a strange man, interwoven with a great exploration of libraries, and their roles and evolution.
  • The Library of Lost and Found by Phaedra Patrick. A fun and fluffy adventure about family secrets and baggage.
  • A Man Called Ove by Fredrik Backman. Yes. I was a little late to the party on this one. Thoroughly enjoyable.

Non fiction: 

Reading List: She Said

Cover of the book "She Said"
Image Description: Photograph of the cover of “She Said,” as displayed on my tablet. The tablet rests on a rich red comforter.

I love finding books that stay with me for a very long time. One of the best compliments I can give a book is to say it was horrible. By which I mean, the book revealed and chewed on something with such depth and thoughtfulness, that it brought the full horror of a situation fully to my consciousness in a way I can never turn away from again.

While I have read a number of very impactful books, the ones that rise to this level for me tend to come from investigative journalism.

There have been two books like that for me in the last couple of years. The first was “Doing Harm” by Maya Dusenbery. It’s an in-depth exploration of how the entire medical system had been failing and gaslighting women. From so-called hysteria, to using only male mouse cells in research labs, to not testing drugs on women, to how inherent bias results in women being under treated for pain.  As a woman who has had a very difficult time navigating the medical system, despite privilege, and has currently incurable illness that is wildly underfunded, the book hit a bit close to home.

The second, I just finished, “She Said” by Jodi Kantor and Megan Twohey.

Jodi and Megan are the journalists at the New York Times who published the Harvey Weinstein expose. This book tells the story of their investigative process, and of the way a man and his co-conspirators terrorized and harassed women for decades, and got away with it. 

It also grapples with the impact and outcomes from that article. It examines the journey of Christine Blasey Ford, as a test of whether cultural change is actually taking place now that women are feeling more emboldened to speak their truths. Are we different? Are these women different? How are our stories the same across many other cultural divides, McDonald’s worker and Hollywood star alike?

I am a strange combination of cynical and naive. Of course men in power can do horrible things and get away with it. But I had not grappled with how many people have to be actively facilitating that behavior for it to continue for decades with little consequence. This was the horrible.

So many women have signed away their voices in non disclosure agreements, being assaulted or harassed and never able to warn their coworkers, or tell their spouses, without potentially dire consequences. The amount of this was also horrible.

I have a bias in favor of journalists, and that was only reinforced. Jodi and Megan, and many others did thorough due diligence on this story, and gave incredible time and effort to get it right. There is simply nothing to dispute.

And for perhaps the first time, the epilogue gave me goosebumps. I’m not going to give that away. But the power and potential was potent.

I cannot recommend “She Said” enough. It’s horrible.

Movie Adventure

Photograph of the front window of Cinamapolis at night. Basic signs are visible, and you can see though to the lobby.

I went to the movies for the first time in about 16 months! My friend and I met up at @thecinemapolis to see Downton Abbey. Fun, fluffy, entertainment.

Last year I was lying in bed one day fantasizing about going out in the world on a bed carried by my friends. I had a revelation that the right wheelchair might work kind of like that. And last night I found myself lounging in my portable recliner, aka my wheelchair, at the movies.

There are some things that still aren’t streamlined well about using my chair. And those bits are still using more energy than I like. But I was able to recline my chair back, use my headrest, and put my feet up on the elevating leg rests for the duration of the film. I was able to keep my heart rate down almost the whole time. ❤️

I made progress on the logistics front. The poncho now has a home in the bag under my chair, as does the rain sleeve for the joystick. I carry a headlamp now, and it was right where I needed it for the roll back home in the dark.

What wasn’t great: The doors at the theater are very difficult to open while in a chair. I had help from my friend with the entry. But the door for the accessible restroom was very heavy and difficult. I broke part of my headrest backing into my chair space at the theatre, so I need to investigate that. I was worried about people walking into my extended legs in the dark in the theatre. Luckily, that didn’t happen. And luckily, by coincidence, I was wearing my Chucks, so the white toes helped. I think it would be good to have some glow in the dark tape or paint on the end. And it would be smart to have reflective tape on my chair. The most stressful thing was coming home and getting stuck, repeatedly, on a curb cut that I thought was safe. If I hadn’t managed it on that 7th try, I would have had to travel in the street. Which makes me nervous.

But overall rating of the evening, 7/10. Would do again.

Communicating About Chronic Illness

Photograph of a rotary telephone on a tree stump in the woods
Photograph of a beige rotary telephone on a tree stump in the woods. There is moss on some of the stump, and dead leaves on the ground.

I am a member of quite a number of Facebook support groups for my illnesses, particularly ME and POTS. One of the biggest themes I hear from others is a struggle to be heard, understood, believed. I don’t often have that problem, and I think there are a number of reasons for that. One is communication tactics and skills. I know that folks with chronic illness, ME in particular, often suffer from cognitive compromise. I’m doing better than many. But there may be nuggets in here for anyone to apply.

I suspect that others may complain about their symptoms and want sympathy or empathy, and understanding that many outsiders have difficulty with.  I certainly suffer in my everyday life, but it isn’t the focus of my communication with folks are are newer to my situation. Instead, I try to frame things in the most objective way I know how, with support from the emerging science on my illnesses.

Explaining complex diseases that are poorly understood is not something that comes naturally to me as an 11th grade science drop out. But I am good at synthesizing information and re-packaging it. So that’s what I endeavor to do, constantly evolving as my understanding changes, and as science makes new discoveries.

Here’s a theoretical conversational scenario if I’m explaining my health situation to a new-ish friend, or a family member who doesn’t know much about it.:

Myalgic Encephalamyelitis (ME) is sometimes called Chronic Fatigue Syndrome.  I think some doctors have used it as a garbage can diagnosis, when nothing else fits. But it is a distinct disease, with distinct diagnostic criteria. While science is still actively working to understand it, with research centers at places like Cornell University, Stanford University, Harvard, NOVA Southeastern, and the Bateman Horne Center, there are some things that appear to be true.

One, is that our energy production and usage systems are simply not working right. I don’t have the ability to generate energy normally, and I don’t have the ability to use or regenerate energy normally. Every activity I do requires more energy than it does a normal person. One way we understand this is that our bodies switch to using anaerobic energy at thresholds much lower than the normal population. You know how runners switch to using anaerobic energy for a sprint? My body does that from making toast. I had a test done that measure what my anaerobic threshold is from a perspective of heart rate in beats per minute, and it’s 86. For perspective, for an average woman my age, that number would be around 175. In order to prevent overusing energy I don’t have, I’m supposed to stay below that number (actually even lower) as much as possible. That’s why I wear a heart rate monitor all the time. Depending on your hearing, you might hear it in that background sometimes while we’re talking.

Any time I go over my anaerobic threshold for an extended period of time, or too often in the course of a day, I’m at risk of post-exertional malaise (PEM). It’s the distinctive hallmark symptom of ME. It causes me a lot of pain and even more exhaustion than I normally have. It can also make my health deteriorate over time.

There are a lot of other illnesses that often come hand in hand with ME, and I have several of them. One of them is POTS. It’s a disorder of the autonomic nervous system. Basically, my body can’t respond well to gravity. When normal people stand up, the nervous system pushes blood back up through the body – that’s how the brain gets oxygen. My body doesn’t do that correctly. So my heart races to try to help bring the blood back up. It happens every time I stand. I take several medications to try to keep my heart rate down. This is a very tricky complication to my heart rate monitoring and pacing. POTS also does other things to my body, like make it difficult for me to regulate my body temperature. In my case, I tend to be hot when others aren’t. Except for when I’m inappropriately cold. 😉

I also got another fun acronym, called MCAS, for Mast Cell Activation Syndrome. It’s like I’m having an inappropriate allergic response to things in my environment, like chemical scents, or foods I eat, particularly those with histamines in them. I get sinus problems, an elevated heart rate (notice a problem pattern), and IBS if I eat problem foods. Which is most foods I particularly like. So I eat carefully off a low-histamine food list, and I take medications and supplements to reduce the impact of triggers.

ME causes pain, overdoing it and getting PEM causes pain. And for more pain options, I also got Fibromyalgia! I take supplements and prescriptions to try to keep the various pain problems to a manageable level. Some are preventative, some are reactive.

In my experience, explaining the lay of the land to folks with that sort of a starting foundation goes pretty well. People might ask a variety of follow-up questions. I might describe my day-to-day life, share the impacts, tell folks I’m generally housebound, and spend most of my time in bed, use a power chair when I leave. But I’ve started by giving them the fundamentals of why.

Here’s a different kind of approach I might use when talking with a health care professional:

First, I always take a printed, annotated list of medications and supplements to any appointment, in addition to a 2 page handout from ME Action that nicely summarizes the disease. If I think I might need proof of ME for some reason, I take a copy of my 2-day CPET report that explains the testing I’ve had, how they determined my anaerobic threshold, my level of impairment. etc..

In an appointment, I usually have to check in with either a doctor or a nurse about their knowledge of POTS and their knowledge of ME. I usually do that by saying something like:

Are you familiar with POTS? It stands for Postural Orthostatic Tachycardia Syndrome. It’s a disorder of the autonomic nervous system, when my body doesn’t respond well to gravity when I’m upright. My heart races to try to pump blood up through my body, and I have a number of other autonomic irregularities that come with it, like problems with temperature regulation. I do NOT have low blood pressure. I take the following meds to try to keep my heart rate down. If anything, my blood pressure is slightly low. If you get a high reading while I’m here, it’s probably as a result of my Orthostatic Intolerance.

Are you familiar with the current research and understanding of Myalgic Encephalomyelitis? It used to be more commonly referred to as Chronic Fatigue Syndrome, but it is a specific diagnosis with a specific set of criteria. There are many problems with our energy systems, which researchers are currently working to understand. One way we understand this is that my body switches from using aerobic to anaerobic energy at an incredibly low threshold. I was tested to understand mine, and my AT is 86. I have that report with me if you’re interested in all the details. I’m wearing this heart rate monitor (you might hear it buzzing), to try to keep my activity under that threshold as much as possible. But that is very difficult.

I’m generally housebound, and spend most of my time in bed. I will exceed my limit making toast. I need daily help around the house to take care of basic tasks, and I currently need help bathing. It is very difficult for me to come to appointments like this, and my primary care doctor comes to my home. You’ll never get an accurate resting heart rate reading here, because I’m doing too much work to be here. My actual resting heart rate is in the high 50s to low 60s. You’re unlikely to get a number below 80 or 90 while I’m here, and it will take me several hours to recover back to my resting heart rate. Because I am over my AT for much of a couple of hours to be here, it could take me a week or two to recover from this appointment.

So that’s a glimpse into my ramblings; contextual and long has always been my style (including when I was a professional trainer).

If you’re interested in the ME Action handout or how I manage doctor’s appointments, browse over on my Chronic Illness pages.

Are there ways that you approach these conversations that you’ve found particularly helpful?

Staying Connected to the Outside World

Cascadilla Falls
Cascadilla Falls, From just above the stone bridge. A man sits on the wall of the bridge. His back is to me, and he’s playing a guitar.

Until I was too ill to go out much, I walked through my neighborhood every day. I walked to work from 2008-2016. I got a dog in 2014. I have a deep connection to this little part of the world. I met neighbors, made friends, and spent heaps of time at one of my favorite waterfalls; where I live, they’re part of the urban landscape.

My hand holding a box of freshly picked raspberries at Indian Creek farm.

I’ve been a hobby photographer for as long as I can remember, and have been taking pictures on my walks from the beginning. Even now, as I go outside to practice navigating in my wheelchair, I’m still stopping to take pictures. I have an immense collection of photos, and I have often used them to reference the timing of things, like when the magnolias bloom, and when the blueberries will be at the farmers market.

Brighly colored flowers in a tree lawn garden.

I miss being outside. And I miss being engaged with the world and the change of seasons this way. A few months ago I had an idea. I decided to make slideshows of photographs I’ve taken locally, a new slideshow for each month. And I use them as screensavers on my TV. It reminds me of what’s going on outside, and what I would see just a few years or blocks away if I stepped outside.

A white and black shorthair cat lying in a garden.

 

Wheelchair Investigations

Photo of Rebecca in her wheelchair by a creek
Photograph of Rebecca sitting in her wheelchair by Cascadilla Creek. She’s sitting in the shade, wearing big red sunglasses, a purple t-shirt, a cross-body bag, black pants, and her feet are in elevated leg lifts.

New wheels! I’m so excited to have gotten my first wheelchair! It took a lot of research, and I’m having a really mixed experience with it. Delight! Hope! Frustration!

Sometime in the fall, I started having periodic fantasies of going places being carried on a bed by my friends. I imagined going to events, having a picnic in the park. And it really came into focus for me that while my scooter was improving my quality of life it wasn’t enough. It wasn’t enough because some of my problems are postural. I *never* sit upright with my feet on the floor. So why would I expect that posture to work on a scooter? Despite having upgraded my scooter to one with a larger seat, it still isn’t big enough to sit cross-legged, nor is that really safe with the scooter design. I could get around with one foot down and one foot tucked under me, but that wasn’t much of a solution. So I simply wasn’t going out.

It finally occurred to me that the right wheelchair could solve my postural problems. After huge amounts of research, I eventually found *one* lightweight power wheelchair that folds and reclines.  The customer service seemed good. I asked them some questions. I talked to other ME wheelchair users on FB. I placed my order. I waited. I waited for the chair to arrive from China in a giant wood crate. For the battery and leg lifts to arrive from California. I am still waiting for my headrest, which was back ordered.

Photograph of Rebecca's wheelchair
Photograph of a new EZ Lite Cruiser wheelchair, with the back reclined and the leg lifts attached. The wheelchair is in Rebecca’s living room with hardwood floors, red walls, bright windows and a gray sectional.

A dear friend helped assemble some of the bits when it arrived. And of note, for those of you who struggle with friends and family being unhappy about a wheelchair coming into your life, mine are excited for me!  T was eager to come and investigate the new equipment. Partly because, engineer. Partly because, friend. Most things came together without too much wrangling.

We’re still having some challenges with the leg lifts. I had thought to buy a wheelchair leg pad, and it is giving me partial relief from what appears to be a design flaw.

Once put together, it needed to charge. Once charged, I gave it a quick back and forth in my apartment, just to make sure it was running. There is very little space in my apartment that is wide enough to accommodate a chair, and my primary goal is to use it outside. There is no ramp on my apartment, which is up about 6 stairs from the sidewalk, so I needed to wait until I had someone who could carry it down the stairs for me. How does this work in the long-term? The same way my scooter does: I keep them in my garage. Because of this, another feature I looked for in a chair is the ability to charge the battery independent of the chair.

I headed out on my inaugural spin, incorporating lessons learned from over a year on my scooter, namely, which sidewalks I have a chance of navigating successfully, given the general state of disrepair, problems with curb cuts, tree roots causing paving sections to push up. It was so much harder than I expected.

The wheelchair is rated to climb up to 1 1/2″. If you are an Ithaca local who walks anywhere on our sidewalks, I suspect you are already laughing. It is even worse than you think. I have cataloged a long list of inaccessible locations on my scooter. Now, uneven surfaces that my scooter can handle, the wheelchair cannot. Traverse large gravel on one side? No. Get through an uneven old curb cut? No.

Folks on FB warned me that this class of chairs (the “inexpensive” and portable ones – at $3000 out of pocket, mind you) drift on slanted surfaces. Let me tell you, that. changes. on. every. single. square. of. concrete. sidewalk.  So, uneven surfaces, bad curb cuts, and drift.

The wheelchair is of course operated by joystick, which my scooter is not. My scooter is much more mechanical and physical. The joystick is very sensitive. And must be used to adjust for everything mentioned above. I was swerving all over the place. It was exhausting.

Ironically, on that first trip out I was stopped by a woman and her mother. The woman is middle-age, like me, and lives with a number of disabling chronic illnesses. She was looking for small, liberal cities where she might like to live. They saw me in my chair and wanted my thoughts. Was I happy here? Yes. Because I have a life here. Did I recommend moving here? No. Was it easy to get around on wheels Ithaca in the winter with the snow? No. I just stay inside. Easy to get around in general? No. Easy to find safe, accessible, affordable housing without molds and allergens? Ha ha ha! No.

An ME comrade who is also a wheelchair user recommended practicing in indoor spaces like big box stores with wide aisles. So a friend an I went to the mall. We folded and unfolded the chair and got in in her Forester. I needed to go to Best Buy. Then I got to cruise the entire length of a dying mall. Navigate Old Navy. Try out an accessible fitting room. Go to Target. Navigate an accessible restroom stall and sinks. Try out reaching for a self-pay machine. Go back through the mall. It was also tiring. But easier.

I’ve gone out on a few other excursions since then. I’m still learning and experimenting.

My current analysis: The wheelchair is *so much* better for my body than my scooter; the postural differences are huge. And the ability to get around in my environment is worse.

My neighborhood and city is so inaccessible. I have almost injured myself or flipped the chair on several occasions. Let’s take Wednesday night as an example, I thought I’d sneak out to watch the fireworks. Here’s how it went: I 1) jacked the chair when the leg lifts jammed against the pavement in a curb cut, 2) got the chair stuck in a curb cut, 3) almost flipped the chair back past it’s anti-tip wheels ascending a curb cut, 4) jacked the front of the chair heading down another curb cut, 5) carefully, successfully navigated a curb cut where I’d gotten stuck previously, 6) almost flipped the chair back past it’s anti-tip wheels ascending a curb cut, 7) got the chair stuck in a corner of gravel in my driveway, needing to get out and push it.

In total, in the above journey, I TRAVELED LESS THAN 2 1/2 BLOCKS to a parking lot, and 2 1/2 blocks back. And I went no further because I jacked the chair in a messed up curb cut and didn’t have the energy to fight it anymore. Also, some of these moments are dangerous, and downright terrifying. I’ve been talking to a few other neighborhood locals, and we can only think of two other folks we every see out downtown in chairs, and they both have different kinds of chairs. I’d put a lot of money on the idea that wheelchair users exist, but they don’t bother to fight the inhospitable environment.

So, it’s a complicated experience so far. I’m not quite ready to try to go out with a friend on the sidewalk, because my steering isn’t quite there yet. But it’s getting close. Once i can do that, I think I can try walking my dog, which is one of the things I miss the very most about being housebound. She’s been pretty good with my scooter, so I’m hopeful this can work too. But i’m still going to be very limited in where I can go, until I can find safe ways to get there.