People often ask me what it’s like to live with peripheral neuropathy. The best way to explain I think, is to describe the difference between a good day and a bad day.
Yesterday was a very good day!
I had relatively little pain. I still had low energy and some fatigue but even that was nowhere near its usual level of oppressiveness. I was able to get out of bed and walk without difficulty, immediately. I haven’t felt anything near normal in years so this was a win indeed. My muscles didn’t feel weak. In fact I was able to walk all over Berkeley on a date at a brisk pace without really noticing any pain, no impairment, no limp. When I sat down for a while, at a restaurant, I was able to get up and walk without stiffness or difficulty whereas, usually my muscles contract and I find myself moving like a senior citizen with severe arthritis. No mobility problems or severe pain to try to mask! It was wonderful.
In contrast, today has been the pits. I’m exhausted. I started the day with a severe spoon deficiency! I feel fragmented as if I am missing pixels. Information trying to connect via sending and receiving ends is spotty at best. My eyes don’t want to focus. I seem to be made up of lots and lots of little bits of pain. It’s like the nerve endings have all become a ragged fringe and can’t connect to anything.
It’s not just the body, it’s the brain. I have difficulty concentrating on any one thing for more than a few seconds. I can’t sit still. I can’t read with any comprehension. A few paragraphs slide past and I realize I have no idea what I just read. Writing coherently is just as difficult. I start to follow a thought and just as it starts to get interesting, it fades like a ghost.
Some of these traits are very much like ones I that manifest when my P.T.S.D is severe. In the aftermath of the attack I survived about 5 years ago I couldn’t read much of anything because my ability to concentrate had been ripped away from me. I was unable to follow through on simple tasks. Even managing a phone conversation was extremely difficult. I couldn’t sit. I couldn’t stand. I couldn’t sleep. I would start something, drop it, start something else, drop it, become so filled with anxiety that I was pacing and fidgeting constantly. The P.T.S.D. is largely, a psychological situation. The brain is screaming danger and it tells your body to react in kind.
In comparison, the symptoms of peripheral neuropathy are mostly caused by the brain sending the weird pain signals, but the physical manifestation is very real. It’s a bit like having a panic attack without the panic. The body going, “OMG! OMG!” without any anxiety being present. The biggest issue is the pain, or sometimes lack thereof.
The brain sends strange signals, “Ahem. Lorelei you have just stepped on shards of glass. By the way Lorelei, there is a nail sticking out of your left hand. Oh hey, did you know your leg is on fire? Oh, did you think you were actually gripping that pencil or holding that coffee cup? Ha ha! You thought you were lifting your foot UP, but I made you trip. That’s so hilarious!! And while you were sleeping, I considered breaking your kneecaps but I settled for breaking every bone in your right foot instead. Enjoy!”
Then there are the days my limbs “fall asleep” but not the normal way like when you lean on something too long. No, I lie on my right side and my left side falls asleep! Sometimes there is a complete absence of sensation. Not long ago I sliced my leg open on what I do not know and did not feel it. I looked down at my leg and saw gaping flesh scabbing over and dried blood that had dripped down my leg unnoticed. It is, I will admit, never boring.
Doctors tell me this is probably hereditary. Treatment options are limited. There is no cure.
I treasure the good days like unicorn sightings.They are glorious mythical creatures accompanied by the “delightful” realization that a good day, is likely going to always be the exception and not only will this get more challenging, it will eventually kill me.
But there are unicorns! I have seen them!