Yeah, I know What a terrible thing to read about it. It's not happy, upbeat, or positive. So why write about it? Because I want other people to know that someone else really gets it. If we can't beat the pain, at least we can know we aren't alone.
Here we go. First, let's get the clinical information.
What is neuropathy?
Neuropathy is damage or dysfunction of one or more nerves that typically results in numbness, tingling, muscle weakness and pain in the affected area. Neuropathies frequently start in your hands and feet, but other parts of your body can be affected too.
Is neuropathy curable?
In some cases, correcting the underlying condition that caused neuropathy can allow nerves to recover or regenerate. For instance, not all cases of chemotherapy-induced neuropathy are permanent. Some types of neuropathy, such as diabetic neuropathy, are irreversible, and the goal of treatment is to relieve symptoms and prevent further damage.
What does neuropathic pain feel like?
It frequently involves burning or tingling sensations, but it can also have shooting, stabbing, electric-shock-like, or numbing qualities. It can be spontaneous or brought on by a stimulus that wouldn’t normally trigger pain signals (allodynia). Your reaction to a stimulus could feel more intense than normal (hyperalgesia) or unusual (paresthesia).
I wrote about it in my blog about my diabetes, and all of that same pain (and more) still continues. I cannot sit with my feet still for more than a few minutes at a time. If I do, the pain intensifies to the point I need to apply one of several pain blocker lotions or gels. I am constantly flexing my toes and my ankles, trying to keep my feet in motion to minimize the pain. And usually, I am unsuccessful in doing that.
And that brings us to the real point of this blog post.
The physical pain is only one part of the problem. The other part is experiencing it without making it the focus of every conversation and get-together with friends.
Since my diagnosis, I have mostly been at home. I work remotely, I have a home gym, and Ric has retired, so we generally pass the time right here together. He also knows how much pain I am in, and he is always trying to find ways to make me feel a little better. He's my husband and he meant every word of the "in sickness and in health" vow that we made to each other.
But when I'm with my friends, I realize that I am now extremely self-conscious about it. It's not that my friends are anything less than supportive. It's me in my own head, worried that I am making every moment about me and the pain I am in.
Here's an example. This past weekend, I was with friends up in
Mammoth Lakes. While sitting around talking, I could feel the pain starting. My friend asked, "
how are your feet?" Obviously, from the expressions on my face and the non-stop wriggling around, she knew I was hurting. I admitted I was, but immediately worried that I was becoming the-guy-who-won't-shut-up-about-it.
Again, this is me. My friends have expressed true concern for me and I am grateful for that. But my insecurity is running rampant. If this is truly non-reversible, and I'll experience some degree of this pain for the rest of my life, I worry that I won't be able to be out and about with other people and hide what is happening. And that means well-meaning friends will be in their own tough spot. Do they ask about the obvious pain I am in or do they ignore it, already knowing exactly what is happening and that neither of us can really do anything about it?
You know, I have always thought of myself as empathic and understanding of those in chronic pain. Now I worry that I really didn't get how intrusive and impactful it is to everyday living. And maybe I came off as indifferent and uncaring to friends who were experiencing their own chronic pain and illnesses. I didn't really understand until now the dark places it can take you. But in a weak moment brought on by a lack of sleep and feeling powerless over your own body, the promise of no more pain at any cost looms large. And that scares the fuck out of me right now, because I now understand the appeal that choice can have.
I don't know what else to say about this right now, besides a reassuring promise that I know I will get through all of this somehow. I'm not the kind who gives up. I'll keep focusing on the good things in my life, continue to work with my doctor to reduce the pain, and try and try to not get caught in a doom spiral.
What's my doom spiral? It's me thinking that my friends are annoyed hearing about my pain, so I stop spending time with them which makes me feel less connected and more isolated and more fearful that my friends don't want to be around me so I isolate even more and the cycle goes round and round.
Writing this post and sharing it is a first step in reaching out, setting anchors, and trusting in the people who care about me. I can't hide this pain, and honestly, there's no reason I should. Instead, I've written this long, rambling blog that probably only makes sense to me. And that's okay, too. At least this truth is out there.
And finally, for no reason other than my own vanity, is a selfie I took yesterday. Because the pain I am experiencing isn't enough to dull my own light.
