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.

 

 

Bed-tethered Life Hacks: Bedside Supplies

Photo of Rebecca's bedside setup
Photograph of Rebecca’s bedside setup . The colors are warm, in red, pink and orange. There are some pops of turquoise. Two carts and a school desk are visible, as is the side of the bed. All the contents are described in detail in the post.

I spend about 90-95% of my time in bed. I’m able to get up to use the bathroom, grab something from the kitchen, get a book from the living room, but I don’t move around much more than that. And my goal is to do everything I can to minimize how much I move. That’s because my energy production and recovery system is severely malfunctioning from ME/CFS, and the goal is to do as little as possible to maintain, and in some cases regain, function. Over the last six months, I’ve been slowly iterating the design of the space I spend the most time in so that it can support me in the best ways I know how. I used to love those “what’s in your bag” posts. So I thought I’d do a long “what’s next to my bed” post.

To start with, there’s my bed itself. I have an amazing mattress, and this year I’ve added two wedge pillows. My back went out again in November, and they’ve made a big difference in supporting me and minimizing some of my pain. There are a variety of pillows with different characteristics, including a meditation cushion and a yoga bolster. I rotate a sheet on top of any blankets on my bed so that I have an easy way to keep things clean with a dog and a cat. It’s easy to pull a sheet off the bed for the wash, and replace it with another. I can do this myself if I need to, where I can not change my sheets or do my laundry myself. Right next to my bed is a poof that my dog uses to springboard herself up into bed with me, or sometimes she uses it as a dog bed.

NIghtstand. It’s an old metal cart on wheels I found for free on the side of the road. It is exactly the right dimension to fit in the small space I have next to my bed. Directly underneath it is the power strip that most of my electronics are plugged into. On the bottom shelf, my trash can.

On the middle shelf a beautiful wooden box that holds my face-care products. Exfoliating face wipes can take the place of actual washing. Moisturizers and a face brush.  I sometimes wear simple makeup – brows, mascara, lipstick (these can greatly increase one’s video-call confidence, and sometimes they’re just fun!). They’re all in the box too. And next to it is a two-sided makeup mirror with a battery powered light ring.

The top of my cart holds my sunrise-simulator alarm clock. While I rarely use an alarm these days, it is also a dimmable light. Wireless charger for my phone. An old letter sorter that belonged to my mom is one of my favorite organizers. It holds my paper planner, note paper, pens, pencils, scissors, remotes, and my tablet. There’s a long charging cable wrapped around the corner support on the cart. It charges my tablet, and every night it charges my Fitness tracker.

On top of my cart is a three-tiered wire rack. It’s designed to be mounted on a wall, and I believe I originally used it to hold hats and gloves and scarves inside my kitchen door. But the bottom is flat and sturdy, so it can stand. The bottom tier has things like moisturizer, nail file, sleep mask, microfiber cloth for my glasses. The middle tier has tissues, hand and body wipes, dry shampoo, a hair brush, tape roller, floss picks. The top tier has two of my four daily pill-strips, and other medications and supplements I’m likely to need with some frequency.

An old school desk is to the right of my bed. Inside it are my journals/notebooks and my laptops. They are easy to reach and easy to charge here. There’s a pencil case with markers and highlighters and such. I don’t use the desk as a desk, but I often use it to hold the tray that comes back and forth between my room and the kitchen twice a day with my food. Under the desk is a basket that holds some books and miscellaneous papers. Somewhere down there on the floor are my flip-flops.

Next to that is a rolling IKEA cart. The wheels are super smooth, so it is very easy to move this. The top tier holds my water bottles, my other two pill strips, a ceramic tumbler, a dish for my pills, electrolyte powder. The middle tier I’m using for some additional supplements that I need to dissolve in liquid, and also snacks – currently pistachios, corn Chex and potato chips. The bottom tier is a mishmash of stuff, but is often holding accumulating recycling.

It’s all an experiment, and I iterate constantly. In fact, I’ll have a new bed soon. It will take up a bit less space than the one I have now, at 6-8″ shorter. And it will make my air conditioner setup much less cumbersome.

 

Quality of Life

Photo of Rebecca and Marigold relaxing on the porch
Photograph taken from Rebecca’s vantage point on the couch on her front porch. Her feet are propped on a table, and iced coffee from Gimme! and a ceramic tumbler on the table. Marigold dog is standing further out, looking off the porch across the street. There are lush green ferns on the porch, and leafed out trees past the porch. A hanging basket of yellow and peach flowers hangs in the upper left corner.

Here’s the thing about having a really disabling chronic illness. It’s unpredictable. And very difficult to plan for the future. While I have several conditions, the one with the most dramatic impact on my life is ME/CFS. I could improve. I could worsen. There’s no way to predict. It’s not well-understood as a disease process, but there is fast-paced emerging research. Which means there could be treatment in a few years. But there’s no way to know.

For most of us, the unknown is pretty uncomfortable. I had a long-standing habit of thinking I could control things. (Ha!) But one of the things I came to understand (in part through my dear friend and amazing life coach Jaya), is that denial of reality is not helpful for me. And that’s what’s often going on for me when I’m in a cycle of attempts to control and frustrations of it not working. It’s what I now personally call “beating my head against reality.”

Luckily, I have a meditation practice, and that has helped bring me to a place of a decent amount of acceptance of my current physical reality. Once I’m willing to see my current reality and accept that it is true, quality of life can become a priority. Not trying to get better (that would of course be awesome). Not waiting to see what might happen down the road (although I track my symptoms carefully and monitor research advances regularly). But how can things be the best they can be, now.

Quality of life may mean different things to each of us. Some things it has meant for me: Symptom relief. Finding a good aide. Asking for help. Investing in a new tablet so I can read free books from the library without having to exchange physical objects in a place. Asking friends to rearrange my furniture so that it works better now that I spend 95% of my time in bed. Learning to rest more often. Staying connected with friends and loved ones.

The needs and answers keep evolving, and I’m finding it works well to approach much of it as an evolving experiment.

I became bed-tethered about nine months ago. At the time, my home did not change. It’s just that now I was in the same room all the time. But over time I started noticing, hey I’m in bed everyday. I haven’t been out to the couch in several weeks. And realized that the laptop I was using to watch TV was becoming sort of inconvenient. And I had a spare monitor lying around. So it came into my room and I brought the Fire TV stick in from the living room. And now I could watch shows without dealing with balancing and positioning and overheating concerns. And then I realized I’d been in my room for many months. Why am I keeping the TV with the better picture and the volume remote in the living room when I never go in there? So the TV came into my room and the monitor went out.

Something similar has been happening with my nightstand. I realized slowly that the more that I could keep next to me, the less time I could spend standing up (which is actually bad for me). But there isn’t a lot of space next to my bed. About 14 inches. But oh, I have this rack in the basement. And if someone brought that up, I could add it on top and have three bins. Oh, if I re-purpose my mom’s old letter holder I could have a place to keep my tablet and my planner and the remotes and some pens. Oh, I’m doing something really awkward to manage my laptops and keep them in reach. Let’s try something differently awkward that might solve other needs that I’m noticing.

I’ve got a couple of new and big experiments in the lab right now, and I’m looking forward to sharing how they’re going once there’s some more data. Have you run any interesting experiments, or found ways to improve your quality of life?

 

Disability and Assistive Devices

Image of Rebecca on her mobility scooter at Cascadilla FallsWe are not shown many examples of disability in the media, and the ones that we are shown are often portrayed as tragic, or in the realm of inspiration porn. People seem to have an idea of disability as being black or white or in extremes. Like, someone is totally blind or totally deaf or their legs don’t move. But disability is so much more vast than that!

I hear the current stats are that 1 in 5 Americans is disabled in some way. For many, that means chronic illness. Chronic illness can have all sorts of impacts on how people move through the world. Maybe they have to take medication. Maybe they have to carefully monitor their diet. Maybe they need regular treatment at a medical facility. Maybe they can’t stand up as much of others because their heart rate or blood pressure doesn’t respond well. Maybe they have to carry emergency medication or a way to communicate with strangers to help keep them safe. Maybe using an assistive device makes something in their life easier, or possible.

I have spent years now listening to the stories of strangers on the internet as they recount countless times that they have been hassled by strangers for using disabled parking spaces that they are fully entitled to (your doctor has to fill out forms to certify your disability for the DMV), harassed for using a power cart in a store and being young, being gasped at when standing up from a wheelchair to reach something.

Lately, I’m hearing another story as well, the one where someone’s loved one thinks they shouldn’t get a device that would improve their quality of life, wanting them to suffer through even if it means living a smaller life. Sometimes it’s a lack of understanding of their illness, sometimes an externalization of something the loved one wishes was not true. Sometimes even medical professionals act like it would be a failure or a character flaw, or they think the the patient is resigning themselves, not trying hard enough to get better, or will somehow make themselves more ill. None of this helps the disabled person who is just trying to improve their quality of life.

Visible assistive devices are difficult for many users to choose to use. They have internalized these messages, many of which are born of deep entrenchment in the medical model of disability. Many of us are introverts who don’t want the attention that it brings. And none of us want to be in a position to have to explain or justify themselves, and certainly not about the intricacies and challenges of moving through the world in our bodies.

The first time I went out in public with a cane was terrifying for me. I was so worried about how to navigate my professional life. My brain fog and cognitive problems were beginning to set in in a way that terrified me when it came to my job. I was an analyst at the time, and my job required me to engage in complex thinking and clear explanations of complicated data and processes. And I needed a cane because the neurological problems were also affecting my balance and gait, making me tired, and giving me pre-syncope. It must have been sometime around 2005 or 2006, and I had yet to be diagnosed with POTS or ME/CFS. I didn’t understand what was happening, and I was desperately trying to find answers. And I was afraid that I would lose my job if I was found out.

I’m also a private person (says the woman writing a blog post about her illness). I’m happy to use my life as an educational or supportive story for others, but only on my own terms and on my own time. I worked in a place that was theoretically very supportive of staff when things were going on in their lives, and where relationships were highly valued. But that doesn’t always translate to good boundaries or thoughtful interactions.

The days before that first day at work I practiced possible lines with my partner. Things I could say to theoretical questions I got asked. It helped me feel more secure, and gave me a little bit more confidence to do this hard and scary thing.

I will never forget a conversation I had with a colleague at the elevator. I was holding a laptop and files in one hand, racing to get to my next meeting. I was using my cane in the other hand to balance. We were both waiting. He looked me up and down and said, “What did you do to yourself?”

I’m sure to many people, this sounds like a perfectly reasonable question. But do you hear the blame in it? Not only have I been put in a situation where I’m being asked to explain myself and my body, I’m being told that it was my fault, that I’d done something to cause it. And the assumption was that I had an injury.

I don’t remember what I said. But I remember the feeling of it. And it felt awful. And it felt awful at a time that I was running to a meeting in which I had a significant role. A time that I was trying to prepare for in my head. But a well-meaning colleague had derailed me.

I don’t hold this encounter against the man. But it is a small example of the attention that anyone could have to manage anytime they go out in public with an assistive device. Since that time I have used a cane, a cane with a seat, a rollator, carried a camp stool to use as a footrest. When I was working, I had multiple ergonomic assessments to help support my illnesses, and had a special office chair, two ottomans in my office, and a wooden crate for a footrest that lived in a storage closet outside the conference rooms. I could occasionally be found lying on the floor of my office, maybe with my feet up the wall when I really needed my blood to go back up to my head. It was awkward, but it got easier. And I became incredibly clear that it was just what I needed to do to take care of me. I know some people talked about it behind my back. And I know a couple of colleagues though I was somehow faking my illness. But I was clear about me.

At some point I mustered the courage to use a mobility scooter at Target and at the grocery store. It was the only way I could still do my own shopping. I couldn’t stand very long without feeling faint, no matter how much water I drank and what medication I was on. I didn’t know at the time that ME caused people to draw on energy reserves that weren’t being replenished, and that sensitivity to sound, light, scents and chemicals was just a normal set of symptoms. But I knew that sitting down was the only way I could choose my own ingredients for the week’s menu.

Those scooters are hard to drive! And they make noise when you back up. And the aisles are narrow. And people leave their carts in inconvenient places. And they don’t move their bodies out of the way. And seasonal end cap and free-standing displays are practically an invitation to get knocked over when trying to turn 180 degrees from one aisle to another. Also, stores are full of people. And some of those people stare. And some of those people are people that you know, and maybe not the ones you wanted to run into. But it made something possible that I couldn’t really muster otherwise.

A little over a year ago I purchased a mobility scooter. I was trying find a way to get out of the house, and maybe walk my dog once in a while. And I knew I could no longer walk any distance. I was still letting my dog out to pee in the backyard in the evening, but friends had taken over the daily walks. Oh my gosh it was hard to go out around the neighborhood the first time! I live in the same neighborhood in which I worked. I could easily run into 350 former colleagues, or friends or neighbors. There I was, thinking about my lines all over again.

I was also dealing with something more complicated – operating a machine in a moderately hostile physical environment. I was learning the controls, experimenting with speed, surveying every uneven sidewalk, identifying every tree root, and discovering where there were no curb cuts. While wondering who I might run into, what they might say, what I might say back. It was daunting.

But it was also easier. I knew my scooter represented freedom. I knew it meant that I could go out with my dog, that I could see my favorite waterfall, that I could visit a friend on their porch.  In fact, one day last summer I took my dog to a waterfall, said hi to a friend on his porch on the way back, and got to stay for an impromptu cookout. Without that scooter, I would have been home alone and isolated.

Disabled means lot of different things. Assistive devices are freedom and participation. We are not entitled to other people’s stories.

 

 

 

Signal Boost: What to Do When You’re Bored With Your Routines

Blame hedonic adaptation: the tendency for us to get used to things over time.

Source: What to Do When You’re Bored With Your Routines

One of the things that gnaws at me a little is how much my life has drifted into routine as my illness has become more severe and I spend more time at home. I’ve never liked most routines. Systems, yes. Predictability and sameness, no. To the point where I’ve spent most of my life rearranging the furniture every six months.

I just made a furniture change last week, and I have some ideas for more changes that are bigger. I get fresh flowers maybe once a month or so, and that mixes things up in my sightlines. I’m thinking more about how to mix up my regular activities in the course of the day so I feel less bored.

Are there things you do to mix it up when you get bored?