I used to walk over a mile to get to work.
I was 23. It was my first “real” job as a designer. It was at a downtown design agency, equipped with a swanky office, ghdh, and a Starbucks across the street. Although my measley entry-level salary could afford the bourgeois macchiato that I gripped in my hand every morning, I couldn’t afford the daily parking fees that came with working downtown. So, I parked in a free lot across the river, and I walked. Every weekday, for over 2 years.
But these days, I can barely make it across the grocery store.
I first noticed something was wrong when I was having a hard time moving around at LARP. Despite my weight I was a highly active person, and could keep up with even the most athletic folks on the battlefield. After a while, though, swinging my foam swords became more challenging, and eventually I decided to sit out during combat.
When I told my doctor, she just told me I was chronically dehydrated, and gave me some electrolyte supplements. For a while, I believed her. I took a break from LARP to pursue other goals, like moving across state lines, and visiting more of my “online” friends in person. It was during a Disney trip with my “Twitch fam” in 2018, though, that I realized that something was very, very off. After walking around the parks all day, my body began to shut down. I was weak, shaking, and in so much pain I was in tears. I became frustrated because I assumed I was just out of shape, but when the pain was still present the next day, I knew I needed to see a doctor.
In 2019, I was officially diagnosed with fibromyalgia. It’s not an easy diagnosis to achieve. The gauntlet of doctors, blood work, x-rays, and exams I had to go through over the course of a few years was exhausting, and when my rheumatologist finally dropped the F-bomb on me, I cried in relief. At last, we knew what was wrong with me. At last, I could get treatment!
What is Fibromyalgia?
Fibromyalgia is a debilitating pain disorder accompanied by chronic fatigue, sleep, memory and mood issues. Fibro patients have what’s considered “abnormal pain perception processing,” i.e. our brains and nervous systems don’t process pain signals in the same way that non-fibro brains do. The symptoms can be mild to severe, depending on the day. While some days are good, others can be extremely disabling.
Fibro affects almost every aspect of my life. While a short walk may be effortless for some, for me it can feel like a marathon. I can’t get across the grocery store without my knees buckling and pain flaring throughout my entire body. I can’t count the amount of times I have had to cancel plans last-minute because I’ve been sabotaged by exhaustion. It is highly frustrating not having control over what happens with your body, but over the years I’ve learned to let go and let myself rest when I need to.
Using Mobility Aids to Get Around
I am a stubborn person. Or at least I was, until fibro took over my life. I was really resistant to using a mobility aid because I didn’t feel “disabled enough,” whatever that means. But the day I dropped my stubbornness and started using a cane was absolutely life-changing.
Using a cane granted me so much mobility that I didn’t have before. It helped me manage my pain levels and gave me something to lean against when my legs felt like limp noodles. My internal ableist thoughts made me feel really self-conscious about it at first, but now I am a proud cane user. I even upgraded to a rollator (rolling walker with a seat attached), which gave me the freedom to walk even more. And on really long mobile days (like museums, or theme parks), I use a rentable scooter, or ask a friend to push me in a wheelchair.
Fibro makes me feel like I am trapped in a cage, but the mobility aids help me break free. Unfortunately, the aids I need are not always readily available. Renting an electric wheelchair is often a near-impossible nightmare (usually because they are unavailable). Asking friends to push me in a chair is really inconvenient. And while I am appreciative of the help I’ve received so far, one thing that would really help me become truly independent is a fully foldable electric wheelchair.
Introducing the Electra 7 HD Wheelchair
This chair came highly recommended to me by a friend who also struggles with fibromyalgia, and when I read the reviews, I fell in love. It has everything I need – a lightweight foldable frame, long-lasting rechargable batteries, rough terrain tires, and most importantly: the ability to fit in the trunk of my car. It’s even TSA (plane travel) compliant, so I can ride it through the airport to my gate, then fold it up and have it checked in like baggage.
So what’s the catch? Sounds like the perfect fit, right?
Well, it’s pretty expensive. $3,200 USD expensive.
I spent a couple years debating on whether or not I wanted to make this purchase. I considered taking out a loan, or seeing if I could get it financed. I didn’t want to put myself into debt, but I also craved freedom. The first time I used an electric chair at a theme park, I almost cried. Not having to depend on others to get around was so liberating, it was like a weight had been lifted off my chest. I researched rental options for vacation and events (like conventions), but I ran into two challenges: 1) the chairs I need are often unavailable, and 2) rental fees can be really, really expensive. Since a chair would be a long-term need for me, I decided investing in one was probably more financially responsible. I just had to figure out how to get the cash.
So, that’s why I have a $3,200 donation goal on my Twitch. While I am doing freelance design work to supplement this cost, any donations I receive will go straight into my wheelchair fund. Purchasing this chair is going to be life-changing for me on a level that some people may not understand, but that’s okay. At the end of the day, I know what’s best for me. And right now, that’s saving up money for an Electra.
Getting this chair will grant me the opporunity to travel again. I want to go back to conventions, meet people in person, go on vacations, take cruises, and maybe even visit new countries. These are things that I cannot currently do without a massive amount of assistance, so if you have ever donated to my chair fund, thank you. Truly, from the bottom of my heart, thank you.