Monday, 26 January 2015

I Smell Bad

This disease is filled with frustration, lots and lots of it. The frustration comes in small bits and in big chunks, wrapped around incidents that seem like nothing when taken on their own as well as incidents that are massive and impactful no matter what context you use. Mostly it's upsetting; sometimes, plenty of times, it has the potential to make me downright angry were it not for a willful desire on my part to keep anger to a minimum. And then there are the times when I just want to cry.

This morning is a great example of the kinds of large and small limitations and changes that one could easily dismiss, and then find that they cannot be ignored. The shower is a great place to start. This will likely be the last week of my life where I can take a shower unaided, where I will get myself onto the shower bench, wobble my way through washing myself, and transfer back to my wheelchair. That, in and of itself, is upsetting; to realize that another change in how I live is on the way and that there is bugger all I can do about it. It's just another thing I will be ultimately forced to accept.

Then there are the smaller things, the less visible things. For example, when you spend your whole life sitting in a wheelchair, the skin in your perineal areas never gets to "air out". Since you are not standing, since there is no movement within that realm, there is a perpetual bit of dampness, a combination of sweat, urine and the remnants of the last shower that just did not get dried off. Given that perpetual bit of dampness, that area of my body smells. No matter what I do, no matter how much I scrub, no matter what scents or fragrances I use, nothing will ever make my perineum smell like a spring daisy, or anything else other than slightly dank and dirty.

I know this is true. I just got out of the shower. After an extensive period of scrubbing, washing, soaping, rinsing and rewashing, after drying repeatedly, there is just the lightest fragrance of crotch rot. I hate this; I cleaned it, I know I cleaned it, I know how to clean it. But there it is.

That smell is because my legs are forever pressing inwards, the dead muscles like flanks of meat pushing sideways under the weight of my body. That constant closure to the any air motion means I never really get dry down there. I think I am going to start taking some time after every shower to just lay in bed, spread-eagle, so I can dry off. Except that I cannot spread-eagle my legs. The muscles don't work. And that leads to the next frustration, the next aggravation, the next anger.


  1. Can the people who are ALS clever meaning your medical associates give you any hints as to how you can help yourself get clean . Or on the other hand can you get help to shower.

    love you

  2. We all stink--I think that's why dogs like us!

  3. There are underwear on the market with high content of "wicking"to pull the moisture away from the body as much as possible. Also,if you look on wheelchair adaptable clothing sites, this isd addressed. Please, dont laugh( too much), but staff at Pearson Hosp used a blow dryer on warm setting on a quadriplegic friend of mine to dry area, and relax sluggish sphincter muscles. Good luck!