I'm getting worse

[cjsmith]

I wrote about asking for wheelchair assistance in airports. I said it felt weird because I'd never done it before. I thought briefly of saying "Looking back over the last eighteen months, I probably should have." But I thought a little and I realize that's not necessarily true. Looking back over the last eighteen months, I've definitely had times when I've been better than I am today. When I went to Japan I walked a LOT. I could walk a lot. It hurt, of course; it hurt big bunches; I was never not in pain. But there's absolutely no way I could do that much walking today -- not multiple days in a row. I could, and did, back in January.

I'm getting worse. This is not good. This is very scary.

One other reason it felt weird is because I'm calling for wheelchair assistance for flying to and from a square dance convention. What's wrong with this picture? Heh! Of course, just because I'm going to the convention doesn't mean I'm able to dance much -- I'm not, not by a long shot -- and I'd like to conserve every shard of mobility for times when I *can't* get help. This, too, shows how I'm deteriorating. At other dances in the past I have only thought about whether I could take enough breaks. For this one I'm not even considering attempting to show up at every session. One session, with breaks between tips and maybe sitting some out, is my limit for a day. I don't even know if I can do that much two days in a row.

I envy people with broken legs because they heal. I envy people with conditions that are hideously uncomfortable but curable. I envy people with incurable things that don't affect fundamental stuff like standing up. I've long since quit envying healthy people. They're not even in my universe any more.

Comments

[quasigeostrophy.livejournal.com]

*hugs* I wish there was something I could say and/or do.

[cjsmith.livejournal.com]

*hugsback* Thanks. So do I ;-)

[melanie.livejournal.com]

it just isn't fair.

have they even definitively decided *what* the total problem is yet? or is it that they know the problem en toto, but the treatment options are nebulous gambles at best?

it really, really isn't fair.

[cjsmith.livejournal.com]

Nope, they don't know what the problem is. Certainly not the cause, and from what I can tell not the current situation either.

I think the person who has the best handle on it is probably my current physical therapist. He can't even try to figure out how it got this way but he can say what he thinks the pain is from (irritated nerve plus inflammation of joint). His theories seem to fit my symptoms pretty well, so I'm guessing he's the closest to being right.

[deedeebythebay.livejournal.com]

It just blows my mind away to think of this happening to you the way it has. I can't believe there is nothing they can do for you. I wish there was something useful I could say. And I know there isn't. All I can offer are hugs to be given in person some day.

[cjsmith.livejournal.com]

Thanks. *hugsback, also in person some day*. Bleah, grr, grump... I need to learn how to deal with this, somehow.

[wordweaverlynn.livejournal.com]

Damn, I am sorry.

It seems so unfair.

[cjsmith.livejournal.com]

Thanks. Yeah, it is unfair -- *shrug*. I have to learn to deal with that, and so far, I'm not dealing very well.

[datagoddess.livejournal.com]

I envy people with broken legs because they heal. I envy people with conditions that are hideously uncomfortable but curable. I envy people with incurable things that don't affect fundamental stuff like standing up.

I envy people who can breathe without wondering if what they're doing is going to cause an asthma attack. Remember my dilema a few months ago wondering if I should use the scooter carts in the grocery store, since the more I can use assistance the more I can do - conservation of energy.

IOW, I can relate. I think we should be issued new bodies at 35.

[cjsmith.livejournal.com]

I hear ya. Breathing is pretty darn fundamental. I remember that when I read Chris Reeves' autobiography, Still Me, he wrote about hearing of spinal injuries and he'd ask immediately what vertebra (what level). His first thought upon hearing the answer was often "Oh good, he can breathe."

[tsjafo.livejournal.com]

*hugs*

[cjsmith.livejournal.com]

Thanks!

[ohhjuliet.livejournal.com]

You're always in my thoughts. xoxo

[cjsmith.livejournal.com]

Thanks!

[ashiegrrrl.livejournal.com]

I envy people with broken legs because they heal. I envy people with conditions that are hideously uncomfortable but curable. I envy people with incurable things that don't affect fundamental stuff like standing up. I've long since quit envying healthy people. They're not even in my universe any more.

I know _EXACTLY_ how you feel. *hugs*

[cjsmith.livejournal.com]

*nod*. I am hoping you get answers soon!! *hugsback*

[lesliepear.livejournal.com]

(HUGS)

Being treated in a place with people much sicker than me makes me count my blessings also.

[cjsmith.livejournal.com]

Yeah, that makes lots of sense. When I go to the podiatrist I see people who are "sicker" than me but they are curable. Maybe I need a good dose of perspective in, say, an oncologist's office! That would knock me out of the poor-me for a bit, that's for sure.

[jtidwell.livejournal.com]

Wow. I feel really, really bad for you. Y'know, I was talking to one of my doctors a few days ago, and in the course of the conversation, he said for the first time, "This is no longer about curing it. This is about managing it."

Giving up like that just is not in my nature, but like you, I don't know what else to do because no one understands the underlying biological mechanisms. And what I've got (no details here) isn't nearly as bad as what you have -- I can still be active! I can only imagine what you're going through.

New bodies at 35. I liiiiike that idea. :-)

[cjsmith.livejournal.com]

"This is no longer about curing it. This is about managing it."

Oh wow. That's a dash of cold water, eh? I don't know what you're living with (and I understand if you don't feel like explaining) but whatEVER it is, knowing that it won't go away can't be an easy thing to accept.

I like the idea of new bodies at 35, too! That's just about exactly when I needed mine. Well, if you don't count needing one at twelve.

[msmichelle.livejournal.com]

CJ, I wish I could help. I wish medical technology could help...and hopefully it will someday soon.
What you may be currently lacking in physical foot related issues you definitely make up for in spades, intellectually & intuitively.
Big huge hugs to you!

[cjsmith.livejournal.com]

Thanks. Maybe some day doctors will figure this one out. I don't know. In the meantime I guess I have to figure out how best to live with it.

And thank you for the compliment! [embarrassed grin]

Hugs back.

[cyan-blue.livejournal.com]

Hugs, CJ...

[cjsmith.livejournal.com]

Thanks. I wish I were always cheery and positive... but that's not realistic. Today, I grump.

[ckd]

If it were only possible to average your pain out over all the people who would be willing to take some of it, I bet it'd be so faint that nobody'd even need an aspirin.

[cjsmith.livejournal.com]

Aw, thank you! :-) That's a nifty way to think of it.

I like your journal name. TMBG fan?

[hnybny.livejournal.com]

Unsolved painful chronic medical conditions...check. I will agree that most of the time it doesn't affect my mobility but admit I have been shuttled about an airpot in a wheelchair before.

I send numbness vibes [[[[[[[[numb]]]]]]]]

amazing what a few of those can do.

[cjsmith.livejournal.com]

Thanks! And some numbness vibes back atcha. No fun, I expect, having to be shuttled around in a wheelchair when you know that "except for just this one thing" you could walk.

I wonder if I would qualify for removal of all the sensory nerves in the forefoot. That might -- maybe -- solve the pain problem (while adding other issues of course).

[firecat]

As for wheelchairs to and from square dance conventions - it all has to do with spoons (I assume you're familiar with that currently popular metaphor).

In a science magazine recently I read an article touting the benefits of walking and the author snarked at people who rode an escalator to their gym instead of climbing the stairs to the gym or just going for a walk. I wanted to swat him, or at least give him the experience of what it's like to find walking uncomfortable and still want to exercise.

[cjsmith.livejournal.com]

Ayep, I'm conserving spoons.

the author snarked at people who...

Healthy people just have no clue. I can tell that it's going to be very difficult for me not to slide down into believing that healthy people are basically inferior...

[kineticphoenix.livejournal.com]

I remember talking with you about this at length last year. I'm so sorry that things are getting worse for you, and I wish there was something I could do.

You are in my thoughts.

[cjsmith.livejournal.com]

Thanks. I try to at least stay cheerful, but sometimes (like when writing this post) the grumpy gets its turn.

*****CONGRATULATIONS***** on your handfasting! 8-)

[kimatha.livejournal.com]

I can only just barely start to imagine how bad this must be for you, because of that period of chronic hip pain I had a couple of years ago, and also because of my current chronic TMJ pain. But I don't have to walk on my jaws.

It is just flabbergasting to me that the doctors have not yet been able to fix what's wrong with your feet.

[cjsmith.livejournal.com]

Yeah, I don't have to walk on my abdomen either, much as that pain has been troublesome for me in the past. (I'm enormously grateful it's mostly under control now.)

I didn't know you had TMJ pain. Owie. Is there any help for that? What can be done?

Me, I'm just wishing the doctors would get around to figuring out what's WRONG with my feet! Gah. I am an engineer, a find-the-problem type, a solve-the-puzzle person. The concept of just saying to someone "Take a bunch of Aleve" boggles me. Aren't they curious? Don't they itch to know?

[irascignavojo.livejournal.com]

You're in our thoughts - and, as promised in another post, now in my prayers.

Curable or bearable - at least one fo the two should be your lot.

As for inferiority of healthy people (what exactly is that) it probably exists, in my case at least. While I might not complain about some migraine or my petty allergies that are growing in number, I can not stand (and do not react well to) real pain. Kudos to you.

Hugs in person one day? Sure, whenever you want or can come.
Iras

[cjsmith.livejournal.com]

Thank you for your prayers.

I don't really believe in the inferiority of healthy people. That's my frustration talking. What I meant is that people who don't have a particular problem sometimes find it easy to be judgmental when they don't know what it's like to have the problem. But I don't think healthy people are any more or less judgmental than sick or disabled or pain-filled people. I need to remember that.

I have never had a migraine myself but the descriptions seem to me like they are very much "real pain"! I would be frightened of getting migraines.

Hugs back -- in person one day! :-)

[kateyule.livejournal.com]

Oh, I'm so glad you're coming to Convention. Let's hang out some and chat. I also plan to bring a card game or two. We infected the A&C weekend with Fluxx a few years back -- ok, that sounds much worse that it actually is -- and a grand time was had by many. (Not MY fault some of them kept playing until 4 a.m.!)

[cjsmith.livejournal.com]

Ooo, yay, you'll be at Convention too! 8-)

Fluxx is great fun! Do you own SPANC yet? I sooo want to play that one. Need to get my grubby paws on a copy.

Also want to play 1000 Blank White Cards with a willing group some time. Complete zaniness is right up my alley.

[rampling.livejournal.com]

More *hugs* for you from me. I'm glad you're posting about these things so you can get support from your LJ friends. And kudos to you for asking for the wheelchair assistance -- you oughtta feel proud that you're taking care of yourself, and saving what stamina you do have for the things that matter to you. Remember that for every person who might think you're wussy for asking for help, there's another person who would get on your case for not taking care of yourself and letting yourself get run down (and these are the ones who care about you the most!). And you can be the person who is proud of yourself, or the one who thinks you're wussy. I vote for proud. Actually I wanna put in several votes.... ;)

[cjsmith.livejournal.com]

And you can be the person who is proud of yourself, or the one who thinks you're wussy. I vote for proud. Actually I wanna put in several votes....

Aw, thanks! :-) Your comment gave me a big grin.