Denial 101: I don't need a cane! What am I, crippled?

No_more_pain;224918 said:
Some of the talk of scooters in another thread got me thinking about something I'd been wrestling with this year. And yes, I know I use the word "wrestling" in this context a lot. Think of it as the opposite of physical comedy! My brain wrestles so much, I think it may go pro some time. Take on Hulk Hogan in a Royal Rumble, maybe. Earn a giant, gaudy metal championship belt that I can wrap around my head...


Mobility. In more recent years, my fundamental mobility seems to have been challenged more than usual. A lot more joint and muscle pain overall, and especially in the mornings. Or after sitting--which is often. Pain in the arms, pain in the back, pain the neck (har!), pain in the hands... those are all one thing. But escalating pain in the legs and feet... ugh. Now it's messing with my basic ambulatory functions!

And yet, my only response to any of that was mostly to up the frequency of pain meds. Hope that taking extra timing stretching before getting out of bed might help take the edge off. These sorts of things. The idea of using a cane flitted through my head from time to time, as I noticed that sometimes the pain was such that it could be unbalancing--which isn't so great, in most circumstances (unless I was going to moonlight as a birthday clown that specialized in pratfalls)--but I never acted on it.

It wasn't until my mother brought back, from her mother's house, a cane that belonged to my grandfather that it clicked. The idea settled in. I tried it out a bit, and it did help. Not a magic fix, but an improvement. It required some extra thinking, as if learning to manipulate another, unfeeling appendage. Immediately my mind buzzed with a swarm of thoughts... I need to find a cane that says Me. I need to figure out how to incorporate this into my day to day, without leaving it somewhere absentmindedly. I need to make sure I'm using it correctly so I don't give myself more pain in all the wrong places. I need to make sure I don't use when I don't need to--don't want to become prematurely dependent on it! Develop new habits! A whole new world!

Then another thought crept into my head... "This makes me feel old." I already wrestle (!!) with that feeling for other reasons. Adding a cane to the picture just made it a hundred times worse. "What's next, a walker? A wheelchair? Maybe a power scooter with a horn? Perhaps I could have the lower half of my body surgically replaced with a motorized set of Wheely Feet (patent pending)..."

Whoa, whoa... hold on a moment... I'm getting ahead of myself. A cane isn't too bad, right? You can get all kinds of canes... some with fancy designs. Some with swords hidden in them (I could be the first CFS Ninja!) ... there are options! Maybe racing stripes?

Confident that I was onto something, and merely overreacting, I convinced myself that with a cane, I would look like this (click for bigger version; yes, that's House, M.D.):

Now we're talkin'! That's not bad at all, right? All I need to do is learn to say stuff like "It's never lupus." or "Amyloidosis." and I'm golden.

Buuuut... not so fast...

I caught myself in a mirror, leaning awkwardly on the cane...

Yeeeeeah, never mind.

The cane now rests on the bannister, looking important and well-placed. And there it will stay.

For a while, anyway. I hear the clown business is picking back up.


I seem to remember House looking awkward a few times also! Me, I just look awkward on my own. :) I did just get one of those folding 3-legged stools that also functions as a cane. In my case, I think the ability to set while I'm away from home will mean a lot more. I might actually be able to go in a store again.
A long while back, I found a "Teenager CFS Blog" in which the young man explained several devices he has learned to use to help him "accommodate" his misery. His one suggestion of learning to lean on this device, truly intrigued me at the time?

Following my struggles to work and manage to breathe because I worked in a high-stepping profession, I eventually did just what you did. I found out that the cane had a multipurpose. On the one hand, it did get in my way & I did slow down my pace. I could go further to be independent, albeit slower. But, what I have also found is that as good/bad as that slender beast is for me; it also had an affect on those around me! And then, it was extremely beneficial & the inconvenience then had some value!

It works the same way as a person who suffers from emotional trauma (somewhat like domestic violence or neglect). If one has a broken arm, people empathize, ask if they can help, or step around so the person with the obvious indicators (a cast on a limb, crutches, et al), they say "Oh my, what happened to you"? If one is invisible because of their illness/injury, people scorn, disgrace, even ridicule the one who suffers in silence. So, I experimented with the cane, and found that my "inDISAvisibility" helped me so I either was left alone and did not have to explain to someone who really don't care, or I received compassion, support and more patience from them.

On occasion, I also am able to explain the nature of my illness in a brief, descriptor when "What is ME?" is asked? I simply respond, "muscle pain, brain & spinal cord inflammation". 1 cane, 7 words! Now I have their attention! I guess if we start getting in people's way, we become visible!

I often hear, "when did you start needing a cane?" to which I reply: "when the doctors can't figure out what is wrong and don't take the time to find out how to treat this!" Or, "sometimes I use if for support, and sometimes I just use it to slow me down"! Left unsaid is -- so I can have half-a-life out of bed!

I think that young man knew something, way ahead of his time? The more people we educate, the sooner, we we will be recognized. The cane is a double-edged sword for me. I wish I could find that young man's blog again, because he had some great suggestions on how to modify his ease of life. He had some good equipment for being able to use his computer in a special stand while resting? I keep looking for any energy conservation tools I can get my hands on. But the cane, scooters, and anything else that makes your life easier, is far more important than the image that you look fine to them, when you are at a miserable phase.

Let's face it Dr. House did not have to "DO" much, he only needed people to know he was good at his craft, what it took for him to get there is even more impressive. I don't always take the cane, only when I need support, or I need to slow down to be able to do more for me! And, I did find a cane that matches my personality, so much so, that people will ask me where I got it, because they would like to get one? Image'n that!

My thanks to that smart, young man who shared how he lives with his ME!
I tend to carry an umbrella when leaving the house. I can walk fairly well but being in stores, standing, bending and regaining upright posture is tough. I get headrushes and weakness (sometimes around the house too, but it's easier to go into a 'lean' on something in the house). The umbrella helps for something to lean my weight on while I regain orthostasis (if that's a real word). It sort of runs counter to the 'making your illness visible' theory, more like camouflage. I like Molly's strategy as well. Having a cane could help people to recognize that you have a 'real' disability. In my case it would be a bit strange looking, as I would use the cane to stagger up and lean on for a moment, then go walking off looking fine, but darn it, standing in one place is hard! Luckily there is usually a chance of rain here so an umbrella never goes amiss :)

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