The condition of polyradiculitis is usually associated with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Guillain-Barré Syndrome (GBS). My symptoms are the same as found in CIDP and GBS, but I have neither of those diseases. I developed polyradiculitis in April, 2011, after taking oral terbinafine (brand name, Lamisil) for 5 weeks for toenail fungus. However, it wasn't diagnosed properly until May, 2013. In June, 2016, we discovered that an artificial hip implant, which I'd received in 2008, had been leaching cobalt and chromium into my body. Heavy metals can be a factor in nerve damage. Psychological trauma was also a factor in the onset in April, 2011.
I've written quite a bit about living the hell of polyradiculitis. And there have been years of hell. It was downright scary as my symptoms worsened and spread. They are no longer spreading, and I had some slow, incremental improvement after adding Charlotte's Web Hemp Extract in June, 2015, to my daily regimen. (But then plateaued. After that, we discovered the metal-leach.) I've had more improvement since getting the leaching implant removed and replaced in 2016. But even with improvement, I still receive lumbar steroid epidurals every 12 weeks and cervical spine steroid trigger-point injections every 12 weeks, flipflopping with the epidurals.
Through the years as symptoms progressively worsened, I was forced to back away from "normal" life. I now have new "normals."
One of those new normals is that, due to limited energy, I am seldom able to socialize, online or offline, accept with Hubby and sometimes our adult children. I have three long-distance friends with whom I visit regularly via telephone. (I had four but one died a couple months ago. I miss Linda.)
At times I've felt like a foreigner when I have been with people or even in conversations online or on the phone. The things most people do in every day life are no longer a routine part of my life. Shopping. Traveling. Cleaning house. Yard work. Cooking. Laundry. Going to work. Going to concerts or theater or out with people in a group. Spending hours or days visiting with family and friends. Overnight travel trips, even if just for a weekend. (Though I have taken a few trips, as long a Hubby is along. And I did take one solo overnight trip to the mountains last summer. That was a really big deal for me. I've not been able to do that since.)
There have been times I've felt deeply isolated. I've learned to manage those times, for the most part.
Isolation visits when I don't feel connected - when my fatigue and weakness are so overwhelming that simply waking up, standing, and making my way down the hall exhausts me.
Hours feel like days. Days feel like weeks. At those times, I tell myself, This is the pattern. It's your normal. Time will feel like its moving at a sloth's pace. That's a distortion. Look at the calendar and your notes to remind your self that the speed of time hasn't changed; your realty has. This reality will pass, and you will again feel connected.
Isolation visits most when I'm unable to ride my bike through the woods. As long as I can bicycle the woods - the place I feel most connected with life, where I feel a sense of purpose, where I feel confidence, where I feel an integral part of a "community," where I fit in - the feelings of isolation (along with feelings of worthlessness and pointlessness) do not exist or are, at least, minimized.
Used to be when I lived with almost constant widespread pain, cycling the woods relieved the pain, temporarily. My widespread pain symptoms (especially in my neck, jaws, and arms) have improved since my surgery in August, 2016 - a revision lateral hip replacement to replace the defective, leaching hip implant that I received in August, 2008.
My fatigue and weakness though, since surgery, are almost non-stop. It's not that their severity has worsened; rather, the fatigue and weakness are more frequent. Before surgery I'd get three to four sequential weeks of relief in response to my routine lumbar epidurals and neck injections. That is no longer the case. But still, cycling often provides temporary relief from my post-surgery fatigue and weakness. I don't know exactly how, other than perhaps the release of endorphins somehow help? I had wondered, due to the unrelenting fatigue since surgery, if I'd developed Chronic Fatigue Syndrome. But, I do not believe that's the case. CFS is often worsened by exercise. That said, cycling is the only exercise I can do that provides good, refreshing, energizing relief. Even stretches can leave me feeling tired or exhausted.
Is getting started on a cycling trip easy? No. It's hard work. But I know the feeling of freedom that awaits me once I get into the ride. That feeling is on a continuum, and there is no guarantee. But I can't recall a time I've been the worse for cycling, except the one time when I fell off my bike.
Unlike walking, when I cycle, I do not have to carry my body weight. My bicycle supports me. I do not have to lift my legs. They push the pedals round and round which acts as leverage to move me forward. I do not have to use my arms and hands for anything except support, steering, and changing my gears. Changing my large, crankset gears is the biggest challenge due to the thumb-strength required to push the lever into third, which I do with a grimace.
My bicycle, Olivia... she truly is my freedom.
Freedom because my body feels lighter on wheels - I do not have to work so hard in order to move.
Freedom from the concentration and calculations required to perform routine, daily self-care tasks - my mind has more margin.
Freedom from having to string together words in order to communicate - there is no need to explain anything to anyone.
In those moments --cycling the wind, immersed in communion with Nature-- words aren't necessary; sentences even less so. In those moments, the linear alphabet --strung into words, stretched into sentences-- feels a shallow, peripheral communication when compared with Her song...primordial, evolving, deep, rich, wise, solid, fluid...
Beyond words...
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| My bicycle, Olivia, rests along the New River Rail Trail in VA. |
2 comments:
((( <3 )))
Thanks Zoe... <3
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