Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Learning to Lean-How Adaptive Aids Improved My Life
I used to look at adaptive equipment and see it as a flashing neon sign, complete with an arrow pointing at the user (me), “This person is weak” the sign flashed, “can’t do normal things” it sometimes proclaimed. I avoided using tools made to help ease the stress of daily life. After all, those arthritis aids were for people who couldn’t and I could (kinda, with a lot of struggle, okay and maybe occasional tears) but I wasn’t so bad off that I really needed assistive devices, or so I thought. I thought I was fighting to remain independent. It turns out I was just fighting the use of tools that would make tasks simpler for me. Yep, that’s me alright, stubbornly chopping down the trees with a hatchet because I can’t have people seeing me use a chainsaw. The irony? Before diagnosis, I would not hesitate to pick up a tool to make a job simpler. In fact, my creative use of tools was always one of the things I was most proud of, Yankee ingenuity is in my blood. So why the tool avoidance after diagnosis? It turns out, I was more afraid of appearances and the labels they bring than I am stubbornly independent. (Even I was surprised by that one!)
The result of my stubborn tool avoidance? Struggle, giving up, and more tears than this stoic Maine girl is used to shedding. After a few weepy pity parties over the things I couldn’t manage and a complete breakdown involving a water bottle which may still to this day live under the bush I hucked it at, I began to realize I did have a choice. To struggle or to get help. Finally starting to come to terms with the limitations RA had been putting on my body, I began to consider how I could work around them. That acceptance, that RA was hampering my ability to do, was essential. It turns out it is essential to every part of the RA journey, but that is a much longer story. My first assistive device purchase? A bottle opener, if you have ever lost your shit over an inability to get a drink of water, you know why that was my first toe dip into the world of arthritis tools.
Cut to a few years later and my house is loaded with handy little things that make my life less of a struggle. Bottle openers, dressing sticks, shoehorns, various electric kitchen gadgets, scissors and a whole slew of other helpful aids now live in my home making it safer and more accessible for me, and surprise, giving me more independence. Most of those tools were picked up willingly, some even came with some excitement as I knew they would make me more able. In the fight against disabling disease, that is priceless. Giving myself permission to make that fight easier, shifted things in a small but crucial way.
That is not to say it just shifted all at once and I was able to seamlessly accept all sorts of helpful tools. Quite the opposite. Each set of tools purchased followed an acceptance of their necessity, my need to do. This meant accepting the need for help over and over. If you have followed me long, you may know my stubborn independent nature made that tougher than it probably needed to be. It certainly did when it was time to pick up a cane and eventually a walker.
Some lessons only sink in if we repeat them over and over, accepting help is one of mine. Coming to terms with the fact that my legs were no longer interested in their supportive role, and unable to submit to a life on the couch, eventually led me to accept the need for a cane to help me hobble along. As something I would need outside of the house, making my struggle visible to the outside world, that was not such a simple tool to pick up. In fact, it took extreme need and a moment of desperation for that to happen for the first time. It took a loved one landing in the ICU in critical condition when I had been barely able to walk for a week for me to chose to pick up the cane my doctors had suggested I might find helpful. In the battle between able to get to his side and unable to be there, there was no contest, I had to figure it out, so we stopped and got my first cane on the way.
Since that desperate day, I have made a pact with myself, never let it get that hard before accepting help. Whether that be the assistance of a loved one, or some handy gadget or piece of adaptive equipment, taking help when it is needed, opens life with a disease that often shuts doors to us. It gives us freedom and independence, and perhaps most importantly, it saves our energy for the things we wish to do. Living in a body that can turn the simplest tasks into a struggle, that is a priceless resource.
What handy tools for life with RA can you not do without? Keep an eye out for our upcoming guide, Handy Arthritis Tools That Reduce The Struggle.
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