Friday, June 24, 2011

Breath, Wheel, Fight, Dance

Sudden prolonged weakness. Too weak to move, hard to breath. Linda and a care worker use the sheet to roll me in bed. I lose almost two hours. Linda tells me I had problems breathing, stopped breathing. She breathes for me, holds me.
I was going to go wheeling that day. I twitch my head to get the worker closer. "Tomorrow" I promise her, "I'll wheel tomorrow."

It might take 2-3 hours to dress and be ready but I will wheel. I am going to be in a 5K within a month, then a 10K, the women’s cancer 5K and Terry Fox 10K.

This week I found a new foundation: the seven people doctors in who study autonomic failure diseases have created this foundation together. They are just now starting on a drug trial, a drug and control group (group that gets no meds) for finding a drug that helps. I think about the Hospital which specialized in Parkinson’s and MSA-p, and how the director told me I needed an autonomic specialist

“Where? Is there one here?” I asked and she promised to look. But she never found one.

Three years later and there is the start of one. The doctors are looking to base themselves in one or two locations. I want to live long enough to know that there will be something other than pain relief and gatorade for the next person who gets this.
“It is a cruel, cruel disease.” Linda said to me today. It is, cruel on both of us. It will be studied at last, medicine at last, not while I live, but soon maybe.

They found three patches of Fentanynl on me, left from previous days. Oops! The patches burn into my skin, so I have to use aloe afterward. You can see the burn on my neck in the previous post. Linda added the adhesive cover patches to the wish list.

We use covers on the Fentanyl patchs because I don’t lie in bed like others, like they expect me to. I move, and wheel, and exercise. One day I’m going clubbing.

“I want to video my workout next time.” I say, “I don’t think they would believe it. I’ve haven’t had a care worker yet who can keep up with my exercise. Not even the first 20 minutes.”

“I don’t think the readers know what you do to survive.” Linda says. “I couldn’t do it.”

I use my hand to rub between my nose. “If you want it bad enough…”
I am rarely at the computer now, either far too ill, or if not, I am up and 'doing.' When I am here, I get my fix of good films and plan my next moves. Also I watch this, so that I remember to keep fighting, and dancing.

Here is my remedy! So while I go dance with the Enemy, you keep on moving, ‘kay? And turn up the volume! ("...everybody seems to have given up hope of trying. I haven't. It isn't easy and it isn't supposed to be” – Terry Fox at 3,113 km)


Neil said...

you go, Beth. Far too many of us spent too much time at the keyboard. You take as much time as you to need to exercise; I couldn't do the boxing stuff you've shown us, and I'm sure I don't have the arms to wheel a 5 or 10K.

I'd rather red of you dancing with Linda, but dance with the enemy if it can keep you moving.

Love and zen hugs,

Lene Andersen said...

Every time you go wheeling, you take us with you. You're right - keep moving, whenever you can.

Dance with the enemy. And lead.

Aviatrix said...

That's a really great post, balancing so many aspects of you and your story. You know we're all rooting for you.

Raccoon said...

You are right. Most of us don't know. And no matter how you describe things, we just can't comprehend. One of the exercises that I do looks really easy. Rolling over. A two-year-old can do it.

It's one of my most difficult exercises. It is NOT as easy as it looks!

That's a great song. I really need to put together a playlist...

Kate J said...

Glad to hear you're going to be wheelin again. Sometimes when you don't post, I hope you're out doing something enjoyable... then it turns out you were in bed, in pain. Glad to hear that isn't always the case... I'll keep thinking of you wheeling! Go Beth!!!
Love & peace

SharonMV said...

Fly, Beth. Do your war dance with the enemy.

I'm so glad that doctors are going to be researching & fighting autonomic failure.

I'm still trying, still working. I won't give up.

Love you,

Baba Yaga said...

No, we don't know. The glimpses you give us are fairly stunning, even so. What that says for the reality...

Good to hear of the foundation, of actual research going on. But bittersweet, that it comes along now.

Elizabeth McClung said...

Raccoon, Baba Yaga: No, I think when I say that readers don't understand that I am a bad writer. If I could write well, then people would - but probably I haven't because it would take longer than a page or two and in the end, so what, right?

By, so what, I mean that I do this for me, so that I may benefit from it. But also part of it is that those who are disabled, or impaired are seen as weak, when right now, I feel like I did during the training for nationals. Only the successes I have aren't seen in public. I have seen Raccoon's sessions on his blog and have seen the result of his truck strength and hand strength - rolling over is hard indeed.

Raccoon (inspires) er...motivates me to do more truck vertical exercise every day, so that I will not have a pot, and I will be strong (when I am not very very weak).

Dawn Allenbach said...

Always moving, I am. Hell I almost managed to overheat myself at a church picnic today. I'm sitting in the AC now, kinda tired. But there's that book to read, and blogs to read, and people to email.

I learned how to keep moving from the best, you know.

Raccoon said...

Yeah, we have a mutual motivation club going on.

The music is by "Little Boots," and is called "Remedy."

Neil said...

*IF* you could write well???

Elizabeth N.F.D.Y. McCLung, you are a better writer now, with less brainpower, no memory, and poor hand coordination, than all the motivational speakers I've ever seen. And you're better than most fiction writers I've read, too.

My dear young lady, it's not that you cannot write clearly; but what you show us, what you write, what you have to experience daily, is so far beyond our own experience and comprehension that we simply cannot properly imagine what you live through each day.

I have heard that the difference between writing fiction and nonfiction is that fiction has to be believable. Your writing is perfectly clear, sweetie; it's your life that is unbelievable. Except I do - I HAVE to - believe you.

Now, you write when you want to, or when you can, and exercise the way you must, and keep showing us what you're up to when you're ready to. Go dance with the enemy, with Linda, and spar with the medical profession.

Hey, there's an idea: take some of those idiot "professionals" you have to deal with to your next boxing night, and spar with them for a while. Maybe then they'd take you seriously.

Lene's right, and far more succinct than I: you take us with you. It's a hell of a ride, but I'm sticking with you.

Love and zen hugs,

SharonMV said...

Me too, what Neil said!


PS You motivate me to be more. Your writing made me write again (something I hadn't done for years), because I wanted to talk to you. I've said many times that your words have power - they have artistry and skill too.

Elizabeth McClung said...

Thanks, I will keep writing then. And try to do it with precision and dedication.