Accommodations in my personal life: making the world more accessible.

Let's talk about accommodations. We'll go over what they are briefly and I'll tell you my story. Yours will be different, but hopefully mine will help.

We hear the term "accommodations" in the context of disabilities at the workplace. These are adjustments that your workplace makes so you can work in an environment that allows you to perform your duties. They can be generic: wheelchair access to all spaces that employees are allowed in. Or, personalized: an employee is allowed to work remotely from home, in view of their limitations.

It's a subject my therapist and I have mulled over together on and off over the years. What can I do to make life more accessible to me given my limitations? I'm a working professional, so workplace accommodations obviously come to mind; but, I've discovered that in my particular case, establishing adjustments that are more personal have been extremely helpful. Below are some of the big ones:

Disabled Placard and License Plate

I have a disabled placard for one car and a license plate for the other. I know these are hard to get in most places, but I had my rheumatologist help me with the forms and it was smooth sailing from there. When I got it, I was desperate: I have fibromyalgia and it was covid-times. The stress threw me into a flare that left me crying at my desk just from a quarter mile walk from the parking garage. I'd have to stop to cry every so often all through my work day. It sounds stupid in hindsight, but I needed convincing that being in so much pain that I was crying, was not normal.

I learnt that the only way I could park in garage attached to my building was to get a disabled card. Reluctantly I asked my rheumatologist, who didn't blink twice before filling out the paperwork. My husband thought it made complete sense. Only I thought I was stealing a spot from someone who needed it more. For a long time, I refused to use the handicap spots unless I was having a particularly hard day. My therapist had to walk me slowly through all the reasons I was entitled to it.

I use my accommodation unabashedly now. I can walk in heels. I can carry my child. But the amount of sheer will, mental and physical energy it takes me to carry my belongings from a parked car to my destination is enough that parking closer makes a world of a different. I'm not winded from the journey any longer. This accommodation fell in my lap, but I had to learn to be kind enough to myself to use it.

Haircut

One of the symptoms of fibromyalgia is allodynia: stimuli that are not painful are misinterpreted by the nervous system as painful. In my case, the sensation of pressure, gentle touch, or anything brushing against my skin get muddled up and confused for pain.

An often under-diagnosed cause of this is small fiber neuropathy. It is under-diagnosed because diagnosis involves performing skin biopsies which can be expensive, and the result has no effect on the treatment. So really, there isn't much benefit to getting one if you already have fibromyalgia. I had the test done because I needed something tangible that said this is what's wrong with you. Briefly, small fiber neuropathy is damage to nerve endings that transmit pain signals from your skin to your spine. Imagine trying to listen to music using an AUX cable that is not making the right connections. It transmits noise, reacts to signals that are not music and you end up with a weird composition of crackles, white noise and some bits of melody. That's what I have in my body: noise coming in through my skin. "Pain" is a way to describe it to others, but really it feels like no other sensation. It simply feels noxious: like I need it to stop. Just the same as I would react to pain. So "pain" works.

What does this have to do with a haircut? My scalp can feel my hair moving, and the weight of my hair pulling down on it. And hair toughing my face and my neck. It's too much. It's too noisy. All of my skin is so noisy that I can't engage with the world while it's being so loud. So, the hair had to go. Luckily, I like my hair short anyway. So I get to wear a haircut that I feel more like myself in. It counts as an accommodation because it required some major changes and expenses. I have to get my hair cut every two or three months, and previously I would simply have let my hair grow out and told myself to suck it up. Not any more! And so, this makes #2 on my list of adjustments I've been kind enough to allow myself. No more hair pulling down on my scalp, or brushing against my skin, yuck! And it saves me a crap ton of time in the mornings.

Ear plugs

Any friends out there with sensory overstimulation? Lots of chronic conditions come with sensory processing issues including but not limited to fibro, and chronic migraines. My therapist recommended loop ear plugs. There probably are others like it on the market but these are what I use. They're essentially earplugs that you use to block out background noises (to varying degrees depending on what you purchase), while also being able to hear and engage in conversations.

I have the Loop Engage earplugs (the clear set) and the Loop Switch 2 (the emerald green ones). I thought I lost the first pair and bought the second in a migraine-riddled moment of desperation, only to find the lost ones a few weeks later. They take a while to get used to. Some people never get used to them. Just like most earplugs, you hear your self louder. But they do a great job in lowering the volume of background noise. This allows me to be around the children at the end of the day when they're still miraculously full of energy — this makes a great purchase for any parent.

The Loop Switch is more comfortable for some reason? And I love that it has a knob you can turn to adjust how quiet you want the outside world to get. I spent a whole day outdoors with about 5 kids yesterday, and a lunch at a loud restaurant with my Loop Switches in and survived it despite having a migraine.

Migraine/FL-41 glasses

I look like a dork wearing sunglasses in office but.. erm... I think my colleagues know I'm weird so it flies.

People with chronic migraines oftentimes also suffer from photophobia, or sensitivity to lights. Bright lights, or any light really, can be extremely uncomfortable. In the early 1990s, certain blue/green wavelengths of light emitted by fluorescent lights were found to be causing headaches. FL-41 glasses were made to filter these wavelengths out, while allowing the rest through. Specifically, they filter out wavelengths in the cyan range (480nm) and are rose tinted. The exact frequencies that are not allowed through the lens depends on who made the lenses. Axon Optics, for instance, makes their Avulux lenses that block out very specifically 480nm (cyan) and 590nm (amber) while allowing green light through. I got my indoor wear glasses from Zenni Optics. They're very lightly rose tinted. And, from Braddell Optics on Amazon, I have two pairs of glasses: one a darker rose-tint the indoor one that I use the most because they're useful indoors or outdoors; and the second one very dark and brown for outdoor use.

Pacing:

Pacing, in the context of chronic illnesses, is a self-moderated form of managing your energy levels throughout your day so you have the energy to do what you want to do. There are ways to practice this and be able to do it on your own. I tried it with using journals to keep track of what makes me feel more or less tired but it got too complicated and I couldn't keep up so I'm paying for a service instead. First of, I'm amazed, and grateful that there is a service like this aimed at people with chronic conditions. I use the Visible app with their wearable tracker.

This is not a sponsored call-out. The app, I believe can be used as a stand-alone health tracker. And I like it because I fill it in once in the morning and once at the end of the day, and can keep track of my migraines, what sort of pain I experienced, etc.

The tracker is an armband/wristband (I wear it on my upper arm) that tracks my heart rate and tells me how much energy I've spent so far on any given day. I can set a budget for how much energy I feel comfortable spending on a daily basis and it has a pacer on it that tells me how quickly I am allowed to spend my energy if I want to stay within that budget. Like marathons have pacers whose sole job it is to let the other runners know that at that if they run faster than the pacer they'll probably not make it to the finish because they'll run out of energy before they get there.

The higher my heart rate the more energy I'm spending. And surprisingly, it works. If I'm feeling off, my app will tell me I'm exerting and should probably rest, or that I'm ahead of my pacer. I can also tag what activities I was doing during a certain period of time so I can see what activities take up the most energy: like showering, or socializing, or driving.

To wrap up...

my internal world is noisy. And I do what I can to quiet it down so I can focus and engage on what's outside, where all the people and things I interact with live. Unfortunately, the outside world is noisy too. If reasonable accommodations can be made required by law in the workplace, it's the very least I could do for myself so I can enjoy a better quality of life.