Adaptation with disabilities

This week’s post will focus on Adaptation.

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Adaptation: defined as the action or process of adapting or being adapted.

Okay… so what does that mean for us spoonies?

Some examples, like a paralyzed person needing a wheelchair to improve their quality of life or a type 2 diabetic changing their diet and working insulin injections into their daily routine, are clear and direct. But not all spoonies have well-known, tried-and-true adaptation techniques at their disposal.

Fibromyalgia, for example, still isn’t acknowledged by some physicians and skeptics, and far too many uninformed people out there claim to have the “cure.” This leads us sufferers buried under countless treatment possibilities and more frustrated than we were before looking up treatment options.

On the flip-side, FND and some other diagnosises with –my latest 2 diagnosis–is a rare . Not only is there no cure, treatment still isn’t universally agreed upon beyond “managing pain". The pain specialist said therapy can provide great relief with or without additional options and opinions online are all over the place. So how do I and others with rare illnesses, find an effective way to “adapt” ourselves to better lives with our symptoms?

After a decade of research and a slew of personal treatment hits-and-misses, these are my 5 Top Tips for Adapting to Life as a Spoonie:

Trial and Error: As much as you don’t want to hear it, there are some things in life we can only figure out by making mistakes. Soaking my feet in ice during a migraine (something that works for many migraineurs) shot my pain level up another 2 points. However, other tips, like heat on my neck/shoulders and a cool cloth on my forehead, HAVE helped me a few times. (You can find more migraine remedies here).

Join Groups, Online Communities, and follow similar people on Social Media: I’ve learned as much from other spoonies as I have from doctor’s and books.and I can honestly say, hearing some of their stories and following their journeys, has offered hope and inspiration in a way most books fail to do.

Read, Read, Read!: Odds are, a magic cure hasn’t been found for your condition(s) since you last checked with your doctor, but reading and doing our own research enables us to stay informed. And let’s be honest…a lot of doctor’s don’t stay as up-to-date on research as they should, nor do they know their patients well enough to keep them up to speed. YOU are your own best advocate (even on your sh!tt!est days).

Put Adaptive Tools and DME to use: If I sit longer than an hour, I know after years of trial and error, that I must ice the first 20 minutes, use a lumbar pillow, and do gentle stretches every now and then if I ever expect to move again. Grabber tools, shower chairs, sock aids, compression gloves, canes, back braces, and more, can be bought on Amazon, most local drug stores, Walmart, and are often approved by medical insurance as Durable Medical Equipment.

Easy, Inexpensive Modifications: Glare from my computer screen, sunlight, and fluorescents send my migraines into another dimension of skull-thrashing agony. Adding an anti-glare screen protector, wearing anti-glare glasses indoors, and dark, migraine-friendly sunglasses outdoors, has greatly improved my quality of life.

Please remember, if you can’t afford the tools you need to better your life, look for a local lending organization. In Arizona, the Southwest Lending Closet and the Society of St. Vincent de Paul lend equipment, and Goodwill is often a low-cost option as well.

*Affiliate Disclosure* Above links are included for reader convenience. Clicking on one of the Affiliate links won’t cost you anything extra. I only link products I, or a trusted fellow spoonie, have personally used and found helpful.

https://katiefnd.wixsite.com/katfndjourney/post/pain-days