Thank you

[cjsmith]

Thank you all for your thoughtful and supportive comments on my "gimp social life" post. Folks made many good points.

- Yes, a scooter would help an awful lot for outings involving movem um, "outings" do tend to involve movement, don't they? I plan to get one as soon as I decide which one is lightest/smallest/easiest-to-transport/reliable/cheap and as soon as I'm pretty sure I'm never going to get better (they're pricey, so I don't want to buy it just to have it for a year). Soon. I'll probably buckle down and get to it soon. I've test-driven several models now.

- Yes, which activities people are doing makes a *big* difference. Anything with the words "explore" or "see" should be planned much more carefully than events with words such as "crafts" or "pot luck". :)

As some of you probably guessed, my main frustration is with myself. If asked to label myself two years and change ago, I would have said: "runner, hiker, camper, backpacker, square dancer, square dance caller, pilot, computer programmer, owned by cats". Scanning down that list will give some idea of how big a shift this is for me. It will take time before I'm comfy in my new life. My thanks for all the words of support.

Comments

[perfect-autumn.livejournal.com]

I somehow missed this conversation. Of course, this week being spent in te Pit of Pain (tm) I'm sure you'll forgive me.

First, can we talk about the scooters? We're seriously considering one for me for trips, days of shopping, traveling, etc. What have you tried, where did you try them?

The activities.... ah yes. Amazing how some things that used to be so simple and fun are now hard and painful. It's suckitude.

Adjustment takes time - and I've found it's pretty constant, for me at least. Good luck, and I'm so happy for you that you have this great support network.

1. scooters

[cjsmith.livejournal.com]

I went to a medical supply place in Louisville, Kentucky, because I know where one is there. (When I'm home I'm too busy for stuff like taking care of myself. Sad, isn't it?) We were there for Christmas so we stopped in.

I looked at several models sitting out on the floor and I immediately decided I wanted one that was small and lightweight and portable. I need to put it in a 1989 Toyota Corolla, and I'm not building one of those power chair hoist things onto the back of my little tiny car. Some scooters are freakin' enormous, the size of golf carts, and I'm thinking they should be street legal. Plus I weigh 125. I don't NEED support for 300 pounds of body -- not when I'm going to have to pick the scooter up by myself.

That narrowed it down to about three things: the Featherlite, the Go Go, and something else like the Go Go. I will have to check out more stores to see other models before I make a final decision. Here's what I found about these.

The Featherlite (or Featherlite Deluxe, I'm never quite sure of the differences any more) was the largest of the three. It is very comfortable to ride, and it comes with a basket that can hold an extra battery or some personal effects under your seat. Major advantages: you can fold it up and walk it like a piece of rolling luggage, AND if you like you can disassemble it into pieces and pop it in your trunk. Major disadvantages: price, reliability. My friend has one and hers has turned out to be flaky as hell.

The next model I tried, whose name I sadly cannot remember, was lighter and smaller overall than the Featherlite but difficult for me or the salesman to disassemble. They hadn't had that model long; it's new. Perhaps he'll get better at it over time, and if I had come in six months in the future, I'd have learned all the tricks to make it easier. It looked very like the Go Go, so the helpful guy steered me to that one next.

The Go Go can't be walked like a rolling suitcase, but it can be disassembled into three big chunks, and it would handily fit in the trunk of a car. I could disassemble it; with your achy hands, you should check one out in person, as there's a latch to pop that might be a little hard to do. I could also lift each of the components. It too is very comfortable for me to ride. Its arms can be removed, which I'd do. There's no real storage space, so I'd probably go with a backpack-ish bag across the seat back. I don't know how a second battery could be carried for increased range. Advantage: price, size. I don't know anything about its reliability.

Another thing to check out in person is the hand controls. My friend with RA chose the Featherlite Deluxe because (I forget which other model) would hurt her hands. In the store I kept repeating how very lucky I was that above the ankles I'm okay. Small or finicky hand controls are okay for me. Tight connection pins are okay for me. Picking up heavy things, of course, requires feet, but I can do it for short bits of time.

There must be a web site out there somewhere with people's experiences of various scooters. A sort of Consumer Reports for scooters. I'd love to see such a thing!

Re: 1. scooters

[perfect-autumn.livejournal.com]

I'll look around.

I've been shopping around for sexy orthotics too.... the joy of disability.

Maybe I'll make my CJ take me to the store today - check out models and pricing. Thanks, and I'll let you know if I find anything.

Re: 1. scooters

[cjsmith.livejournal.com]

Oo, would you? Thanks! We can compare notes!

OK, I will stop being Posty McPostalot and get my butt in to work. :-)

Re: 1. scooters

[perfect-autumn.livejournal.com]

We're going in an hour. I'll report back. There's a special Scooter store nearby!! weee!

Re: 1. scooters

[cjsmith.livejournal.com]

So what didja see? Huh? Huh?

Re: 1. scooters

[perfect-autumn.livejournal.com]

Nothing. None of the medical supply stores had them, and the Scooter Warehouse was closed.

*pout*

Re: 1. scooters

[cjsmith.livejournal.com]

Waaaah! :(

Re: 1. scooters

[moriamerri.livejournal.com]

I didn't look very far, but on the surface this looks pretty good: http://visforvoltage.com/forums/
At least from the forum headings, it claims to cover a huge, huge range--- golf carts, scooters, motorized bikes, power chairs, and all kinds of things that I wouldn't even know what the distinctions mean...... "electric quads" -- oh it does go on.

This one I think is NOT about "your kind" of scooters (not that I have any freakin' idea) -- but you could ask them where to find discussion of the types of scooters you are looking at:
http://autos.groups.yahoo.com/group/TwistnGoScoot/

Now, what about Consumer Reports? I easily found stuff from them on scooters, but, again "wrong" kind -- these are the stand and kick with a foot on the ground typd.

This one is not exactly consumer opinions
http://arthritis.about.com/od/assistivedevicesgadgets/tp/scooters.htm?terms=scooters
still, it looks like it is in the right ballpark, and I have sometimes found the links from ABOUT articles helpful. This article is pegged under "assistive devices", so I think it is at least barking up the right tree. The links at the bottom part of the page look pretty interesting to me, but your mileage may vary (e.g. you have read a lot on related topics and I have not -- and I don't know if some of the topics are too far afield "how to protect your joints")

okay, well, that was a very quick look, so I'm not claiming these are the bestest.....

2. other stuff

[cjsmith.livejournal.com]

Pit of Pain

Ugh. Yes. I so understand! :-(

activities

It sure does suck. I honestly don't know how people manage without becoming bitter and angry. I'm fighting that, I'm fighting it HARD, and I'm deeply afraid that I'm losing. I don't want to be a bitter person... but I see other people doing stuff I used to love to do, I see my friends heal from injuries over and over and over, and it's hard. How do people DO it? How do YOU do it?

Re: 2. other stuff

[moriamerri.livejournal.com]

It sure does suck. I honestly don't know how people manage without becoming bitter and angry.

I thought about these sorts of things a LOT when I was temporarily disabled. Mostly I thought about how freaking HARD it all was and that 6 weeks (or 8 or whatever it was spozed to take) seemed like SUCH an endless timespan. One DAY was an endless timespan. And I thought LOTS AND LOTS about what it would have been like if it was permanent, or unknown. (Mine was very clearly expected to heal in a known time.)

Oh, and now it occurs to me to send you the following text, which sorta touches on this aspect of thinking about things:
This is from the class description for a writing class called "The Ultimate Taboo —Writing about Illness, Pain, and Death" http://www.writingsalons.com/classes/?cat=12

"People think sex is the hardest thing to write about—but if you look around, there are thousands of books about sex. What isn’t written about nearly as much is the body’s experience of illness or dying. “During my mother’s ten year struggle with cancer, I searched for literature that told the truth about suffering but found very little of interest,” says instructor Robin Romm. “It’s not that people don’t write about illness or dying—it’s that there’s not enough honesty and detail in the writing. There’s a way that writers skim the surface, leaving out what’s difficult and true. "

Now it occurs to me that you are a writer, so that may also be an angle from which the above is interesting.

Re: 2. other stuff

[perfect-autumn.livejournal.com]

You're right. There is nothing harder then writing about those things. I do it daily on my real blog, and I find that it's hard for others to read as well. People so often don't know what to say back, can only begin to grasp what it is.

But it's soooo good for the soul. So very good for it.

Re: 2. other stuff

[moriamerri.livejournal.com]

Hello perfect_autumn, I'm VERY sorry it has taken me DAYS to reply to this. As is often the case, it is NOT (just) neglect -- it is because I wanted to go read your blog first, and then there was MORE to think about, and so on. In a way, it seems the opposite of "neglect" but the effect is "neglect". Anyway, sorry about the delay.

You're right. There is nothing harder then writing about those things. Actually I didn't say that, I was quoting someone else who said that (a class description, written by someone who isn't me). But I probably largely agree..... I'd be reluctant to say hardEST -- too many unknowns there for me.

I do it daily on my real blog, and I find that it's hard for others to read as well. People so often don't know what to say back, can only begin to grasp what it is.

Yeah, people sorta don't know what to say about this kinda stuff. Um, socially, that is. But if you can get past the social context part, people have LOTS and LOTS to say. Or that's how I think it works, anyway. I'm not sure if this is just the stuff I read or generally true -- but it looks to me like LJ generally has a lot more "social context" -- as in, it is about people who know each other chatting about daily life type situations -- and blogger tends to be SOMEWHAT (not entirely, but SOMEWHAT) more prone to topic-oriented stuff, where people who do NOT know each other at all are likely to be regular readers.

Finally, are you aware that fibro is thought to be strongly associated with mercury poisoning by many folks? No, I didn't say CAUSED, and I'm not trying to start a fight, I just thought I'd mention it, in case you haven't heard that AND are interested. Feel free to ask me if you want more info (moriam at earthlink.net -- I don't recall if that is available here or not, I'm not REALLY an LJ user, as you can probably tell....)

best regards,
Moria

Re: 2. other stuff

[perfect-autumn.livejournal.com]

How do I do it?

Well, I give in occasionally. I find that helps. Yesterday, I laid out on the bed and beat the shit out of all the pillows, threw stuffed animals and slippers at the wall, while crying and screaming "THIS IS FUCKING UNFAIR!!!" tears streaming down my face.

The keys are, for me at least:

1. Find the tools that allow you to lead your life as close to the way you want.

Searching for the scooter is a great help for that. And remember that b/c of your limitations you get to use cool toys 'normal' people don't. You have to try to see the positive of that. You get a scooter! How friggin' cool. I get awesome canes - healthy people don't. ha!

2. Perspective, perspective, perspective

I remember that I can walk today. A year ago, I couldn't. The days someone can simply hug me, I remember that some days, they can't. It could be worse. I could always be worse. Some days it is - most days it's not.

3. Friends and support

You HAVE got to have someone you can bitch too. Someone who will listen to you cry, whimper, scream, moan and bitch - and know you'll be ok tomorrow. And won't patronize or whatever. You need two friends for this. One who will say "Yes, that SUCKS!" with you and bitch with you. And another who will ask you all the questions about how to make it better, what's the next step, is there something your missing.

Don't feel bad bitching to someone who's worse off then you if they're comfortable with it. A lot of my friends come to me to complain, rant, etc. I am cool with that b/c I know it sucks. Pain is pain is pain - no matter whether it's my kind or yours. It may be the worst you've ever felt. That's all that matters.

4. Don't forget to make the world you live in pretty.

I pick awesome canes. I will chose a scooter in a cool color. I spend lots of extra spending cash to buy sexy shoes (the black leather boots I'm eyeing? $200 on sale). I deserve to be pretty and special and important still - no matter my illness. And so do you.

I spent $60 on a pair of super soft cargo's from Express this week. I can wear them out in public. I've worn them EVERY day this week wince I bought them - I took them off to wash them yesterday. I will buy another pair next pay check - in khaki. Being comfy and gorgeous is worth it.

5. Don't forget to grieve.

A part of you has died. A part of you that you will never get back in all likelihood. Accepting and grieving that loss is important. It prevents bitterness and anger controlling you. It also helps you accept your new life and limitations. You are still you, just a different you. Not a worse you, not a useless you, not a helpless you - just a different you.

6. Chose

Attitude IS important.

I wake each morning. The sun rises each day. I am alive. I can still breath. I am thankful for that. I often tell myself that, and others. A common conversation is:

Them: How are you today?
Me: The sun's shining, and I'm breathing. It's a good day.

I know my life could suck. I could give up. I could give in. I could lose everything of who I am to the despair that my illness can bring to me.

I say, "Fuck you" with much defiance and chose to live, and if I'm going to live - I'm sure going to live well. What's the point otherwise?

Re: 2. other stuff

[sunnydale47.livejournal.com]

I have fibromyalgia and two forms of arthritis, and I was going to tell CJ many of the same things you just did. I have told her many of these things before. But you expressed it all so wisely and so eloquently in this comment that I can't add a thing.

So I'll just say to CJ: "what perfect_autumn said." All of it.

Re: 2. other stuff

[perfect-autumn.livejournal.com]

Yup. Fibro and Connective Tissue disease here. Fun fun stuff.

You're Icon is a quote I have on my main blog. :)

Thank you.

3. support

[cjsmith.livejournal.com]

I'm incredibly grateful for it. People are being really nice, and it means a lot to me.

I suspect it helps that this problem is (at two years and a bit) still fairly new. I haven't worn people out with my complaining. That will happen, for some. I also haven't leaned on people too much yet. That may happen, for a kindhearted soul or two, before I learn when to back off. Goodness knows that in the past I've had one or two people lean on me so much for so long that I've had to distance myself. I hate it, but it happens. There will also come a time when the majority of people I know have never known me without my gimpiness, and they'll presume I adjusted long ago.

Fortunately, the biggest outpouring of support happens to time well with my overwhelming need for it: the adjustment period! It does make a huge difference in my outlook. Feeling gimpy is bad enough without feeling abandoned.

Re: 3. support

[airporter.livejournal.com]

I doubt you'll ever wear people out with complaining, but should it happen with a soul or two, remember that they have a responsibility to you as well, to tell you where there limits are, when they need a break, when you can help them and how.

It makes friendships stronger.