fibromyalgia – Promoting Passion

Creating Through Pain

brookeshaden — Mon, 21 May 2018 13:42:02 +0000

For whatever reason, I have always been hesitant to talk about pain. I live in pain, but I’m not bothered by that and I never felt the need to bother anyone else with it, either. I’ve always been of the mindset that if I take care of myself, and I see the best parts of life, then I can manage day to day. This method is working splendidly for me.

I have Fibromyalgia, which is categorized as wide spread pain. Not very specific. For me, it manifests in joint pain akin to arthritis, chronic fatigue, and extreme body sensitivity. This means hugs hurt me (sadly). It means that I feel a lot more pain when I am touched than the average person would.

That’s just an overview, not a pity party. I don’t mind having Fibromyalgia too much. Some days it’s tougher than others, but I have a really annoyingly positive attitude about it and I don’t dwell on it. I have it easier than a lot of people.

My friends are often annoyed with me because I won’t talk about it or say when I’m not feeling well. How I’ve personally lived my life is to keep my pains to myself and deal with it by myself. I’m not saying this method is healthy; it is just what I’ve done.

So, talking about it openly doesn’t feel great. But, I had a few emails from people recently asking if I would talk about it, so I have. And, I created two images that represent how pain feels to me.

Here is how I deal with my pain and continue to be regularly productive:

1. I always get 7-9 hours of sleep per night. I don’t have kids so that’s point one. But nonetheless, I prioritize sleep like no one’s business. I usually go to sleep between 9-10pm, and wake up between 5-6am.

2. I eat a whole foods, plant based diet largely without sugar. That works well for me personally: I am not attempting to give nutrition advise.
(Speaking of…I’m about to go slice a fresh loaf of this bread that I’ll smear with avocado. My favorite breakfast!)

3. I see beauty in pain. I really do. It inspires me and I create from it often. I let my poses, my emotions be dictated by what pain feels like to me.

4. I carry light-weight equipment. This has made a HUGE impact in my life. My gear that helps me travel light is: Sony a7rii (mirrorless, full frame camera), 3 Legged Thing tripod (carbon fiber, folds really small), and a Microsoft Surface Pro (laptop under 3lbs!). I use roller bags where possible because I also have nerve damage in my back.

5. I have a gratitude practice.

6. I build downtime into my day. I know that I have energy and feel best in the mornings. I do not, unless it is absolutely necessary, work past 7pm. I let myself relax from that time until I go to sleep.

7. I exercise, lightly. I do yoga everyday and hike 2-3 times a week.

8. A common effect of Fibromyalgia is bad memory. I have it in abundance. I keep to do lists and charts to keep myself organized. This helps to get me excited about finishing a goal as well as keeps my brain straight!

I know that there are people living in pain far, far worse than mine. And there are people who have never lived in pain. No matter your experience, I hope this sheds some insight into working through adversity.

At the end of the day, I have a passion that cannot be silenced. I try not to let time get in the way of pursuing that dream. What I mean by that is this: It might take me longer than I think it should to get some tasks finished. I might need to rest and take care of my body before I can move on and conquer. I’m learning to be okay with that. Passion and dreams do not have an expiration date. Take your abilities one step at a time.

I created these two images based on how I feel in pain.

One, a ripping apart of the body, an explosion within.

The other, a sinking, suffocating feeling as time passes you by.

Maybe one of these images resonate with you. Maybe you know the feeling.

Let me know below.
I’d love to open the conversation so that we all feel that we can share our pain.

Promoting Passion Week 61: Birthday Reflections

brookeshaden — Mon, 09 Mar 2015 15:17:28 +0000

Last week was my birthday. I love birthdays. It is a chance to celebrate someone when, so often, we fail to do so. To be honest my husband and I don’t celebrate birthdays much. We say that we celebrate each other all the time, so there is no real need. But nonetheless, I love birthdays because of how reflective they make us. We think about our lives in terms of years, and we often find a way to define a certain year of our lives. For example, when I think of being 21, I think of it as a huge, life-changing age. I got married, graduated from college, moved across the country, and discovered photography. Big year! When I think of 26, I think of how I bought my first home. When I think of 16, I think about meeting the love of my life.

But aside from reflecting on the things we’ve done, it is a chance to start anew. It is a chance to evaluate if you really are the person you want to be, or if you need to change something. For me, there is always something to change. The only question is what I am going to change. I spent the last year of my life changing course. I stopped doing a lot of the things I had done before – business and personal – and laid the foundation for a new life. This year, I am living it. Year 28 will be one of discovering my dreams. Dreaming bigger. Dreaming in my own way. Letting dreams define me.

I emailed someone the other day about a big project I’m working on. His response was “This is an absolutely crazy idea”. And that made my heart soar with joy. “Yes,” I thought, “that is the kind of life I want to live.”

Getting older means learning lessons. It means failing miserably. It means succeeding wildly. It means changing perspective on life. And this is what it has meant to me:

1. Failing is winning for those willing to try hard.

2. Life cannot be quantified in years. If I died right now, I will have lived the best life possible. This I can say with absolute confidence and love.

3. I would rather be crazy than boring. After all, I am the only one I can count on to entertain myself.

4. Not everything will work out, because if it did, we wouldn’t be able to see the gems through the dust.

5. There is never an excuse for boredom.

6. Being present in all that you do means you will never feel like life has passed you by.

7. Being genuine will get you farther than attempting to please people.

8. When you refuse to compromise your beliefs, you attract like-minded people into your life.

9. If you treat failure like an old friend, he will always be there to help you back up when he knocks you down.

10. Kindness should never be dependent on someone else’s actions.

11. Fears are friends wearing masks. Get close enough to see the face of fear.

12. Give your love without need for reciprocation. Receive love like you deserve it.

13. The words “best” and “worst” should never be used to describe someone. We will only look foolish when we are proved wrong.

14. Tell someone why you love them.

15. Live your life to make someone else’s life better.

16. Look forward to each day you grow older. The alternative is death.

17. If you build a community, take care of that community.

18. Dream as though it will happen.

What I have learned this past year can be summed up in these words: Love wholly. Give repeatedly. Create selfishly. Challenge yourself regularly. Live beautifully.

Goodnight, 27.

Good morning, 28.

—

If you would like to send along a birthday gift (trust me, this is not a crazy narcissist sentence…) you can donate to the Fibromyalgia awareness campaign I have running, create an image with a butterfly to raise awareness, or join me on May 9 for the Caterpillar Walk. Alternately, you can donate photo equipment for the photography school I am starting in India for survivors of human trafficking – The Light Space. Signing up for the new After Dark conference will help donate to the school. Or simply check out my Giving Back page for ways to get involved.

Promoting Passion Week 60: Fibromyalgia Awareness

brookeshaden — Mon, 23 Feb 2015 16:43:46 +0000

This is the year of giving back, or at least that’s what I’ve decided for myself. No official title, just an instinct that the more we give back, the more we get in return…and that is definitely true in this case, because today we’re talking about a disorder that I’ve carried with me for half of my life: Fibromyalgia. I was contacted a week ago by an amazing woman named Nancy who is helping to run the Caterpillar Walk in NYC coming up this May 9th. She asked if I would be a part of the walk in some way, either to spread awareness or help to sponsor, and I wanted to jump on board right away!

Given that the walk is called the Caterpillar Walk, and the symbol is the butterfly, I was instantly connected with that symbol and wanted to create art to raise awareness for Fibromyalgia. To be honest, I can’t believe I haven’t thought of it before! It might have been a subconscious act to not bring attention to my own weaknesses due to Fibromaylgia. After all, I don’t want to seem like I’m complaining. I have it much better than a lot of people. However, the time is right, I feel it in my heart.

So what I am asking is that we band together and create art based around the butterfly, either as symbol or a literal reference (Existing pictures are great too!). The butterfly is such a universally understood creature; we all start out as caterpillars and hope to grow into something beautiful and vibrant. In fact, this is the process we all undergo time and time again in our lives, no matter what the struggle or situation. So I feel it is a symbol that everyone can play with in their own way.

Create an image centered around butterflies, and post that picture as you would to your social media. And in that post, mention something about the Caterpillar Walk if you are so inclined, or simply put a link to some information about Fibromaylgia. The goal is to spread the word about a disorder that is very often invisible, since the symptoms do not manifest in any obvious way.

Post your images in the comments section here so that I can send them all in to the lovely people running the walk. And if you can join me in NYC on May 9th for the walk, I’ve got a group put together called Brooke Shaden’s Butterflies, so we can walk together! If you would like to donate to the cause, you can do so under my fundraiser.

Fibromyalgia is something I was diagnosed with when I was 14 years old. Before that I used to wear a knee brace to school, and I started realizing something was odd when I couldn’t remember which knee hurt the day before because my symptoms would shift, so I would switch knees for the brace every other day. Soon kids at school noticed too, and they would question if I was telling the truth about the pain or if I was just doing it for attention. The truth is, Fibromalgia is widespread pain, and every day it manifests a little bit differently.

I count my journey a lucky one. After all, I learned from my mom, who has Lupus, how to push through and conquer. Plus, so many have it so much worse than I do. So I am raising awareness for those who suffer in ways far worse than myself, that they might not feel so alone. And even more importantly, I’m willing to support any cause that reminds us of how little we can see of someone else until we really ask the right questions. We never know what someone else is going through, so let’s be kind and show just how great our capacity for love is.

Where: NYC, Hudson River Walk
When: May 9, 2015
Why: To raise awareness for Fibromyalgia and funds that go to National Fibromyalgia and Chronic Pain Association
How #1: Create an image with a butterfly and submit it in this blog post!
How #2: Donate to the cause under Brooke Shaden’s Butterflies!

To read more about Fibromyalgia (click to make bigger):

..And for more on the walk: