A life of intention and joy

I've been doing some thinking today.

Clearly. (Today is a prolific post day, it seems.)

Today was a tough fibro day, especially pain and mobility-wise. It got me to thinking about my long-term strategies for living with my new reality. I had spent the last few weeks being miserable with my new meds, yet hoping that they would magically cancel out the fibro symptoms. Alas, I have come across statistics in several places that indicate the meds will only help about 50% of fibro peeps with about a 40% diminishing of symptoms.

Basically? It's here to stay. Like my food allergies. Like my hypothyroid. Like my trashed adrenals.

This is my new life. Welcome to it.

But I've also been thinking... I don't want it to be a dismal thing.

I mean, sure... I could focus on the pain, on the limitations, on what's been taken away from me... and I may, from time to time. I won't lie. Sometimes I want to just sit down and cry.


I have a friend who is going through cancer treatments. It started off as breast cancer, metastasized to her liver and brain, and recently showed up on her brain again. She has become The Chemo Princess, and wears a tiara and carries a magic wand with her to every treatment and doctor's appointment. She lets her personality and her joy for life just shine through, and she totally rocks that cancer. (If that makes sense.)

And someone posted this video on her wall, which I watched and came away totally inspired. Like, seriously... it speaks to me in a very deep way. This is my "Fight!" theme song for when I am tempted to curl up in a ball and whimper my way into the night.

I don't have cancer. My illnesses are chronic, but they are not life threatening.

But still, it got me thinking... about how I, too, want to live my life with the joy that I see in those ladies who are fighting for their lives.

In a way, I am fighting for my life, too. Not in the sense that I will die, but in the sense that my dreams, my every day life, my previous way of living... it's all at risk. It's all up in the air.

Will I continue to pursue my dreams, or will I run up against a brick wall and think, "I can't"?

Seriously... I've been wondering lately if I can do this massage thing. It would be so easy to think, "I can't", and give up. But no, I know that I can!

Granted, I have to make adjustments. That's a given. There are things that will be new, scary, uncertain... and there will be things that will be infinitely more difficult than they once were. There are also things that will get easier with time and practice.

But, I mean... I want to live my life with joy and intention. Rather than let this stymie me and stunt me, leaving me a crippled shadow of what I might have been, I want this to be a wake up call to be intentional, to be grateful, and to take advantage of every "good" moment that I have. I want it to teach me to rely on others when I have to, and to be relied on in turn in whatever ways I can.

I know I'll have bad days. Like today. Limping through Wal-mart at half the speed of everyone else... I didn't feel much like smiling. But there were things that did bring a smile to my face. Joy doesn't translate into bliss, I know that. I won't always be in a happy mood. I know that. But I can live a life of joy.

I want to be an inspiration like those ladies are. I want people to spend time around me and come away thinking, "Yeah! I can do _____! It's totally possible! Man, I love life! It's hard sometimes, but I sure do love life." 'Cause that's what I think when I see those ladies and interact with my friend.

I wish I could adequately describe how it feels to have optimism take root inside after feeling little but shock, denial, and disappointment about my new diagnosis until now.

I can still live a good life. It is going to look different than anything I'd ever planned for myself, but I can still live a good life.

I don't believe that God planned this for me. "Plan" denotes that he would intentionally inflict me with these diseases, and I just can't believe that. Allow? Clearly. Prevent? Obviously not. But plan? Don't think so. I would say, rather, that this is being woven into the tapestry of my life. And I can accept that.

I'm planning to buy a rolling, folding walker for my trip back home this Christmas. It'll help me with all the walking I have to do (after hours of sitting--ouch!), and I can use it to help carry my backpack, maybe even as a place to rest if I get one with a seat. I'm going to run the idea past C after Nerd Night wraps up, but I think it would be helpful, even for days like today. I tried using the shopping cart as a walker of sorts, but the metal and plastic digs into my hands/arms and hurts just as badly as walking, maybe more. He didn't like the idea of my borrowing one of the electric scooters they provide, but he can't put his finger on a reason why. He just didn't want to be seen with someone in one of those. (Ouch, a little...) I hope he'll be okay with a walker.

So. Changes. I need to take care of myself better. I need to start eating proper meals, nausea or not. I need to get mild exercise, pain and fatigue or not. I'm trying to branch out and find a support network on the internet of other "fibromites".

I am challenged. I am encouraged. And I am hopeful.

'Cause, I mean... what doesn't kill you makes you stronger! :)

Note: Despite the optimistic overtones of this post, I did shed some tears while having the "I think I need to buy a walker" conversation with C. He casually said, "Well, if you think you need it, go for it." I don't know what I was expecting, but somehow that brought up second-guessing thoughts. "Do I really need it? I mean, can't I just suck it up, and... No! You need to take care of yourself!" 

I believe I'm making the right choice, though it's hard. I did cry, mostly because I never thought that I'd be in a place where I'd even consider buying a walker, much less at 24. I feel a little like a faker, like I couldn't possibly really need something like that because only people who actually have it badly need stuff like that, and it could always be worse, so I will never qualify.

Okay, seriously? I would have been happy to have a walker today. I would have. And yes, that makes me sad. I suppose I'm just grieving... grieving for the life that might have been and has been-- the healthy (hah!), active girl who goes backpacking with her friends... vs. the girl who now needs a walker. I'm afraid to be an embarrassment to C, and even more afraid of being a burden.

I know it's not for every day. But it's still a shock. Sobering. This is real. This is here. This medicine has not cured you. This is a part of your life.

I know not every day will be like today, but it can feel that way when you're hurting. But I know it won't be.

So I'm going to buy that walker, I'm going to wrap it up in neon duct tape (so it will look cool, of course! 'Cause really? If I'm gonna do this, I'm gonna do it right!), and I'm going to smile. I'm going to be grateful for a fiance that stands by me through good days and bad, and who is willing to buy his woman a walker if she needs it... even if she is only 24.

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