Thursday, 22 February 2018

Other People's Stories About Living With Neuropathy Can Put Your Own Experiences Into Context

Today's post from (see link below) is a personal blog post from someone with a relatively rare form of neuropathy. Sometimes we need to read about someone else's experiences, in order to put our own into some sort of context because everything's relative right! I would bet that most nerve damaged people reading this post will be able to identify with this person's life in one way or another. Comparisons are a waste of time because everybody's neuropathy is unique to themselves but there are so many factors that are common to everyone, that learning about someone else's life with neuropathy can be extremely therapeutic. You realise that you're not alone in feeling the way you do and that can act as an anti-depressant any day of the week. That's why this post is worth a few minutes of your time, because parts of your own life are reflected in it.

Beyond words...

I live with polyradiculitis, a rare form of peripheral neuropathy where multiple nerve roots are swollen at the spinal cord. In my case, nerve roots are swollen in my lumbar and cervical neck regions. 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 polyradiculitus 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. Nerve damage symptoms began in my feet and legs and arms and hands and eventually spread to my back, neck, and jaws.

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 have had slow, incremental improvement since June, 2015, after adding Charlotte's Web Hemp Extract to my daily regimen.

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 back, neck, jaws, and arms) have improved since my surgery in August, 2016 - a revision lateral hip replacement to replace a defective hip implant that I received in August, 2008, that (we discovered in June, 2016) had been leeching cobalt and chromium into my body which can contribute to nerve damage.

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 four to five sequential weeks of relief in response to my routine lumbar epidurals and neck injections. That is no longer the case (with the fatigue and weakness).

Often, cycling provides temporary relief from my weakness and fatigue. I don't know exactly how, other than perhaps the release of endorphins somehow helps? 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 doesn't tire me. 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 peddles 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 primitive and archaic way to communicate.

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