Been thinking about penning more about polyradiculitis. To maybe give it a face.
I could be that face. My arms could be that face. My hands and fingers and legs and feet and back could be that face.
I've lived with Polly since late April 2011. Through the years the condition has worsened. Both Hubby and I believe, feel, almost-know that without the (approximately 38) steroid lumbar epidurals and (over 50 rounds) of steroid spinal cervical trigger point injections, I probably would have been bedbound. Other modalities helped too, and still help.
Polyradiculitis is a very rare condition. I've only met one other person who has it. I met her in the neurologist's waiting room. She had it in her neck, on one side. She had great difficulty lifting that arm, which I totally relate too.
My condition is in my cervical (neck) area and lumbar, on both sides. As Hubby states, "It is a wicked disease."
Because I landed in the hospital on 4/28/22 with two good-sized blood clots (one in each lung), I had to go on blood thinners. And I had to give up epidurals; epidurals are too risky while on blood thinners. I went off the blood thinners in December 2022. Thus now, I could go back on the epidurals, but...
1) I don't want high-dose steroids anymore with all their side effects.
2) I developed another wicked condition...insomnia.
I've read that we humans come into this life with certain genetic vulnerabilities for certain illnesses. But those illnesses may never manifest, or if they do, it is due to certain factors in one's environment that turns on the switch. For example, allergies. A person may go through their childhood without allergies, but then circumstances overload the system and BOOM, allergies. This happened with me in my first chronic illness life; I developed asthma at age 22. And I can pinpoint one of the factors that caused the asthma and hives and other symptoms to manifest.
On the genetic side, I have at least two female relatives with insomnia that follows a similar pattern as mine. It's reasonable that my insomnia switched on due to the pulmonary embolisms and their stressors, not to mention the load of long-term polyradiculitis. The insomnia started after the April 2022 pulmonary embolisms.
The type of insomnia I and my two relatives have isn't due to racing thoughts (not that we don't have those from time to time); we simply don't fall under. Mine got bad. I would maybe get 3 consecutive hours on a good night; some nights, no sleep. I trained myself to lie in bed with my eyes closed and simply rest; I often used guided meditations through the night. (Thank you Insight Timer.) After over a year, we finally found a combination of pharmaceuticals and herbs that helps. I sometimes now get 6 consecutive hours of sleep.
Unfortunately, one of the pharmaceuticals has caused me more pain. But I'd rather live with more pain than with sleep deprivation. Sleep deprivation is horrid. Scary. Maddening. Fortunately, I have been able to lower the dosage of that one medicine, so the pain isn't as bad as it was on the higher dose.
Steroids can make insomnia worse. So, I gave up injections and just take a daily low dose of prednisone. I doubt I can ever get off steroids; it'd probably be too hard on my adrenals. I've been on prednisone daily since July, 2011.
Okay Carol, you're starting to go all over the place here.
One of the points I want to make is regarding loneliness. I realize these days that loneliness is considered an epidemic; at least that's what I've read. Personally, I think part of that has to do with social media and its misuse.
But loneliness is also typical when one lives with a chronic illness or disability that severely limits their energy to socialize or do other things that 'should' be easy to do.
That's me. I seldom have the energy to socialize. For the past year-plus, I've been basically homebound except for medical appointments of which I have 2 to 3 per week. If I feel up to it, I will visit a local park for a stroll after an appointment. I use trekking poles or my rolling walker to help me along. Thankfully I can still drive, though it's a feat to get in and out of the vehicle. I realize I am fortunate that I can drive and that I'm not in a wheelchair.
And yes, I hurt. All the time. Even in my sleep. My arms and hands are the worst. One morning in the last month as I was going through the morning ritual of getting my arms to work, the thought hit me, China doll arms. That's what my arms feel like. China doll arms.
Movement takes a lot of effort. I have pain, weakness, and fatigue in all my limbs. I have troubled knees. I have kyphoscoliosis. [I've had scoliosis all my life, but it was never an issue until around 2018. I shrank three inches in four years (probably brought on by hormonal changes that accompany high dose steroids) which brought on the kyphosis. I went from 5'2" to 4'11." In 2018 I purchased an inversion table which I use almost daily. I've been holding at 4'11" since then.] I recently developed TMJ after (again) using my teeth as tools because my hands aren't strong enough to do certain tasks, like opening a baggie. My bite is slowly returning to normal.
Dressing, undressing, and bathing are some of my hardest tasks. So, unless I get really dirty, I only bathe once a week. (I must have a hearty microbiome. Haha.) It's that hard. I cannot shower; sitting on a shower chair or standing are hard on my back. Plus, my arm use is limited. Thus, a bath is easiest, but still hard. (I have really good handrails. Thank you, Norm.)
I spend a lot of time alone, but I no longer have the depth of loneliness that I once had. In fact, I seldom get lonely anymore. Part of that is probably due to a deeper acceptance, acceptance of my condition(s) and my full-time job as a caregiver to myself. I divide up my self-care tasks through the week, but still have a difficult time getting them all done. I'm working on it....
I realized some years back that part of my loneliness with my condition is its rarity. People don't know what it is, understandably. People know Parkinson's, MS, cancer, ALS, shingles, and other diseases. Sometimes I think I need to give Polly a face.
Every other month I receive a free neurological magazine Brain & Life. (It's the kind where you turn the pages with your fingers. Can you hear the crinkle?) In the most recent issue one of the features is with comedian Richard Lewis who has Parkinson's. I don't have Parkinson's, but some of my symptoms are similar.
"You know there are days when just showering and putting on pants and a shirt is a victory." ~Richard Lewis
Amen, Richard...
Your statement applies to me every day...
Thus, every day I score a victory...
Don't we all?
****
