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

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.