This article is utilitarian. It provides descriptive terms for people with similar experiences to use in communicating with their doctors, payors, and loved ones.
It discusses the impact of an ordinary household task, and explains why doing such an ordinary thing could, in fact, be unthinkably difficult for people with certain neurological issues, even though their arms appear to function reasonably well.
It aims to mitigate some of the effects of the invisibleness of pain- and sensory-related disability.
Washing dishes is a problem. It’s never been fun, but it has been satisfying, because, talk about instant gratification: you do something and things are immediately better! I liked that!
Hoping for more autonomy, I recently got a great pair of washing-up gloves. Here’s what I’ve learned.
The problems with washing dishes are:
– The way water over the hands, which are rich in nerves, intensifies sensation and creates constant tactile input that multiplies every other sensation. I think it also has an effect on electrical conductivity in my hands and, as we know, the electrical conductivity in my hands is a complete mess anyway. This is where my CRPS started.
– Hot and cold temperature variation. This activates the C-fibres in my hands and forearms, the nerves that transmit hot and cold and itch and pain. My body has trouble distinguishing between those sensations. So as the water changes temperature – down to fractions of a degree, which most people would not even be aware of – my nerves and the blood vessel activity that the nerves can command are all just having a little meltdown.
– Because of histamine issues and allergies , most of my dishes are glass or metal. Both of those substances have a strong impact on my tactile sensation. (They’re hard to touch and uncomfortable to use, but I have to use them.) I think this has something to do with how extravagantly they conduct temp and, in the case of metal, electricity. Both of which translate to discomfort and pain and impair my ability to control the motion of my hands. This muscular impairment is a characteristic of long-standing CRPS.
So, between having to juggle all that sensation, all that pain, all that vascular/tactile disruption, and the loss of muscle control that comes with it, washing dishes is a real problem for me (cf. taking a shower. Another post for another day.)
Think about dropping glass and fumbling knives, and you’ll see what this means in practical terms.
My cat has learned how to respond when I break glass. She comes to the edge of the splatter zone and meeps to check in on me, then sits out of the way but in sight, supervising the entire process from picking up big pieces to sweeping the rest and finally getting up the tiny shards with large damp rags. Only then does she enter the zone and check my work! She doesn’t let me forget how important it is to clean it up properly, and comforts me considerably during the subsequent recovery time.
I got some dishwashing gloves, hoping they would help. What I’ve found is:
– They eliminate the water contact – until my hands start to sweat. Since they are necessarily an artificial substance, this happens pretty quickly because that’s how my skin responds to manufactured surfaces. The term for this is “sudomotor reflex.”
– They reduce the temperature variations, but not as much as you’d think. I’m astonished, myself, to find just how sensitive these hands are to tiny temperature changes. This relates to “thermoregulation” and “thermosensation” problems in CRPS.
– They do help somewhat with dexterity because they’re nice and grippy. However, they don’t fit well because they’re a generic size. With the quick sweating and the temperature changes, the dexterity problem really isn’t resolved.
– I don’t have to come into direct contact with the glass or metal, and that does mitigate some of these issues. It’s just that they’re not the only issues.
The peculiar nature of peripheral neuropathy with CRPS makes this pretty much unwinnable.
If anyone can think of a way to rinse and load a dishwasher and then remove the dishes when they’re clean and dry but still solves the problems of water, dexterity, glass and metal … I would be happy to hear it.
I’m posting this not to whine, but because it can be so very hard to articulate these profoundly abnormal sensory experiences, and I know I’m not the only one to have them. As always, please feel free to link and copy, and I’d prefer it if you point to this webpage if you put this in print or online. Thank you so much! In the end, if you need to use it, then just use it. Spoonies unite.
Speaking of spoonies uniting…
The fact that this post got written without me going into a complete fugue state and wandering into traffic, or somewhere equally unlikely, is thanks to Elle and the Auto Gnome, who kindly took dictation — and kept me from wandering off in an effort to avoid thinking about this any longer than necessary! It’s a ghastly situation and my usual coping method is to articulate a ghastly situation once, and then focus on workarounds, spending as little further attention as possible on the ghastly thing itself.
She pointed out that being able to articulate these problems is darned rare, so I took the hint and we did this together.
May it be helpful to others in similar straits!