It’s been one of those weeks.

One of those weeks when all I have wanted to do is shut myself up in my room and lose myself in books, movies, and God willing, some good sleep. It is my (and I am sure most of our) default position to “retreat” and isolate when I am feeling bad. And it is a desire I have given in to many times throughout my illness.

But I have noticed something.

I have noticed that by staying present and showing up for my life and my responsibilities, I am frequently rewarded with beautiful distractions from the symptoms that would otherwise consume me.

This has been an incredibly high pain week for me. In the past my pain would have been the reason for not moving, but I am in yoga school now, and I cannot make the decision to isolate myself without making the decision to miss the instruction I find so deeply rewarding.

Tuesday

So Tuesday morning I dragged my stiff, aching body to an 8AM yoga class. For ninety minutes I moved, stretched, and warmed my body from the inside out, and while still very much present, my pain became more tolerable.

But then the class work began, and for three hours we sat discussing the philosophy of yoga. Several times throughout the day, as my body got stiffer and stiffer, I told myself “Just go home.” But I stayed. I stayed because I knew my misery would not change if I were home alone with it, and I very much wanted to be present for the lessons of the day. So I stayed.

We ended the day with another 90 minute yoga session, and while still experiencing pain, I was better than I had been in the morning – and much better than if I had stayed home all day focusing on my pain.

Wednesday

Wednesday evening we had a support group meeting. I started our local group because I understand the need for community – the need to connect with others who understand how you are feeling. But I was miserable, and did not want to go. Yet at 6:30 I found myself there, surrounded by other members having an equally bad day (week, month). We ate and talked and had a really great time – the very best reward for making the effort and commitment  to show up.

Thursday

Thursday was much the same as Tuesday – yoga class all day. In my mind Wednesday evening I was preparing the email I was going to send to my instructor, explaining why I was not in class Thursday morning, and yet Thursday morning came, and there I found myself – stretching and moving with my fellow classmates.

After our morning practice, we sat in a circle and did what my teacher calls “checking in.” Each student takes a minute to share where they are and how they are feeling about their practice. I sat and listened as student after student shared what drives them and motivates them in their practice – what inspires them to keep showing up. Again, I was deeply humbled by the universal nature of suffering.

From divorce and custody issues, to the death of a parent, to abuse and addiction, to just generally being lost about the purpose of life –  there was a lot of pain being worked out and worked through in that room. After everyone had shared we sat silently, absorbing the beauty of the moment, and then my teacher asked, “How many of you feel better just by being here today?” Every hand in the room went up.

Community

On FibroHaven’s Facebook page I wrote this: There is nothing I can do alone that isn’t infinitely improved with the support of community. I founded FibroHaven on this belief: Community is everything. I directly attribute my growth and healing to the strength I gain by surrounding myself and connecting with those in the communities I have chosen to be a part of. Most people in my yoga community do not know I live with fibromyalgia. It is not important that they do know. I have my support group for that. What is important is that I have found (or created) communities that nourish and sustain me, and most importantly communities that inspire me to keep showing up.

What motivates and nourishes you?

What do you love? Where do you find community? It doesn’t have to be through yoga. And some people even shy away from support groups. But each of us has something that we love and that inspires us. Is it reading and discussing books? Check out your library for a local book club. Is it knitting? What a great way to spend some time, knitting and sharing patterns and design ideas with like-minded people. Do you love your church? Maybe there is a committee you can volunteer for. Or if you are interested in volunteer work, find a cause you are passionate about and volunteer for them.

There are days when yes, it is best to honor your body and rest. But I think we have all experienced the days when somehow we managed to show up to a scheduled event, and were rewarded for doing so with laughter and a lighter heart. You walk into a room and see a familiar smile, and your face feels lighter. You hear a familiar laugh and your heart warms. We need community, even if only for a much needed and welcomed distraction from the reality of living with chronic illness.

Friday

Today is Friday, and my pain is better. Showing up this week did not make me worse or increase my pain. Showing up this week nourished me, and encouraged me to keep showing up. That is what community does.

You know how it is in those moments when you get completely inspired – everything is brighter in that instant and you know your life is forever going to be changed for the good. Then you get home, and you set the books down. Life picks up exactly where it left off and you forget. You forget how inspired you were. You forget how to change, how to be better. Heck – you even forget to read the books. Yep, that is exactly what happened.

So I haven’t read his books yet, but I do get his monthly newsletter, and the title of this month’s article really spoke to me: Vulnerable Leadership.

That is exactly how I am feeling these days as the founder and leader of FibroHaven – vulnerable.

You see, my purpose is to share and encourage. I want to be a positive voice and a leader in living well with Fibromyalgia. But how can I do that when I have been feeling miserable since May? Since 1996 really! It is something I struggle with everyday. And it is the reason I am feeling vulnerable today.

I choose not to share the miserable stuff here. You know all too well about it. I would not be explaining or describing something you have not experienced many times yourself. But how do I balance the vulnerable me – the me that lives daily with the ever present and fluctuating symptoms of fibromyalgia – with the hopeful me – the one who embraces life as much as possible despite my constant fibromyalgia companion.

I don’t know. I do not have the answer. But in his article, Mike shared five key principles of vulnerable leadership, and that is where I am going to start.

1) Admit and own your mistakes

My mistakes are many! Daily even. Do you know I have been planning a relaunch of FibroHaven for months? It is still going to happen, and it is going to be really exciting when it does (great new features I know you are going to love), but as the creator, leader, and main cog of FibroHaven, I have dropped many balls.

Sure my health is partially to blame, but so is my procrastination, and my lack of follow through, and my frustrating tendency to sit back sometimes and let life come to me. It doesn’t, and it won’t. It is on me to make this happen. I chose FibroHaven. Nobody asked me to do this, but now that there is this wonderful community connected because of it, I need to follow through better – and I will.

2) Share your fear and insecurity

My fears are many too. Putting myself in the position to be a voice of positivity and change, I fear letting you all down by not changing quickly enough myself. I believe in a holistic approach to wellness, and I have been perusing that approach for a better part of a year, but I am nowhere near well. I fear this makes me a hypocrite and a fraud.

The thing that brings me back to share my philosophy is that I believe in my heart that I will get better. I will improve. I am on a wellness journey, not a crash course. And my hope is that by sharing it here with all of you, something I say may trigger a change in you. Something I experience may inspire you.

I have two purposes on this journey – get well, and encourage you to take your own wellness journey. But there are moments when I feel like “Who the hell am I to encourage someone else when I have so little to offer myself today.” I like it when those moments pass. And fortunately they always do.

3) Don’t take yourself too seriously

This one is pretty easy for me. My sense of humor is my lifeline, my core, my compass. Laughter really is the best medicine, and I am usually the first to laugh at myself. I can share funny and embarrassing things about myself here (and I have) because it is real, and that is life.

Remind me to tell you about the day I ended up ankle deep in wet cement because I thought the construction guys were coming on to me – not yelling to warn me about the wet sidewalk they had just laid. That ended well.

4) Share your own process, journey, and challenges

That is exactly what this blog is – my shared journey. Good to know I am doing this right!

5) Ask for and receive help from others

Oh this is a tough one for me. Now I will be the first to advise you to do this for yourself, but to put it in practice in my own life – that is so hard for me. Again, refer back to my often feeling like a hypocrite. It is for reasons like this.

Do as I say not as I do, right? Wrong! I really need to work on this for myself. There are so many areas where I could use help just with FibroHaven. Who knows, maybe if I were not so stubborn and short-sighted I could have launched the new site by now. I don’t know. All I know for sure is that I am flawed. I have a lot of work to do on myself. And sometimes this makes me reluctant to get on here and advise and encourage you.

But please know this, that everything I share on here, I share because I care. I know how dark this chronically ill life can seem at times. I know how isolating it can be. My hope is to shine a tiny little light, and maybe start a conversation or two.

One of my greatest moments came the other day when two people I met through FibroHaven became friends because of FibroHaven. One lives in California, the other in Virginia. Their paths may have never crossed were it not for FibroHaven. That is it. That is what it is all about for me. And that is what keeps me going on the days when I feel like no one should look to me for advice and support.

There is a reason for all of this. Maybe I am meant to fail and flounder. Maybe that makes me more real. I don’t know. But I do know that I love this community. It gives me courage and reinforces my hope.

And there it is. My vulnerable side…

The National Fibromyalgia Association is the leading non-profit organization dedicated to improving quality of life for people with Fibromyalgia. Their website has been a great resource for me as an FM patient, advocate, and support group leader. The NFA is focused on creating programs dedicated to spreading Fibromyalgia Awareness, like the Fibro Focus events that took place last year, which my support group was fortunate to participate in.

The NFA truly is the leading authority on Fibromyalgia, so when they asked me to help spread the word about the free online version of Fibromyalgia AWARE magazine, I was more than happy to help.

Fibromyalgia AWARE Magazine

Published by the National Fibromyalgia Association, Fibromyalgia AWARE is the first and only consumer magazine dedicated to the subject of fibromyalgia.

The comprehensive publication offers straightforward, insightful information and support. This reliable resource will help to improve the quality of life for people affected by fibromyalgia. The magazine includes:

• The latest news in research
• Helpful information on general health and well-being
• A balanced approach to treatment options
• Lifestyle and self-management techniques

As a non-profit organization, the NFA relies on purchases of the print version of the magazine to help them continue their mission. But now they are offering a free online version to reach and help as many people as possible.

Now we all have free access to the great stories and editorial produced in each quarterly issue. For example, here is a small sample of what you can find in the Winter 2009/10 issue of Fibromyalgia AWARE:

• Making the Invisible Visible: The Science Behind Fibromyalgia
• How to LIve a Balanced Life: Lessons from Practice of Tai Chi
• Your Best Night’s Sleep: Tips to Get the Rest You Need
• Making the Right Online Connections

There is even a special section dedicated to Disability – determining if it is right for you, dealing with the myths and landmines.

So there you have it. Quality information from a quality organization. Bravo to the NFA for creating this free online version and making this valuable information more accessible. I am happy to support their efforts and get the word out to all of you.

If you haven’t already, click on the link above to the Winter issue and get your free copy. Happy reading!

I am approaching the one year anniversary of my blog. I have grown a lot over the past 11 months. I have made many wonderful new contacts. I have learned to be more open and honest about my health – with myself, and with my family and friends. I understand more about the causes and contributing factors of Fibromyalgia. I could go on and on about my growth, but this post is not about me. This post is a celebration of you.

If you were to ask me the most important thing I am taking away from this past year, I would say YOU. From the members of my Meetup support group, to my blogging buddies, to my facebook friends and to my twitter team – everyday I am amazed by the quality people stricken with chronic illness – my chronic community.

You are not a passive bunch, you are passionate. Passionate to learn, and to share, and to heal. Passionate about your craft and your creativity. Passionate about your friends and family. Passionate about your causes and your concerns. And I want to honor your passion. Some of you may have read this list before, but I think it is worth sharing again. We can all use a reminder every once in a while about how valuable we are. And you are valuable – each and every one of you. Valuable, and so much more.

Who You Are

You are survivors.

You are scientists.

You are strong.

You are seekers.

You are smart.

You are sensitive.

You are stoic.

You are resilient.

You are resourceful.

You are artistic.

You are intuitive.

You are compassionate.

You are genuine.

You are proud.

You are beautiful.

You are passionate.

You are brave.

You are creative.

You are wise.

You are empaths.

You are private.

You are each different.

You are complicated.

You are connected.

You are givers.

You are a community.

You are family.

You are friends.

You love life and want to live it to the fullest.

You seek knowledge and understanding.

You appreciate empathy.

You have great senses of humor.

You have hope.

You are real.

You are much, much more than your illness.

Everyday you show me how valuable we all are. Everyday you impress me. Everyday you overwhelm me. And everyday you remind me that we are so much more than our illness. But just in case you do not always remember this yourself, look back over the list and take in all that you are. Pick out the ones that apply most to you, and really think about them. Focus on them for a few minutes. Say them over and over again in you mind. Be proud and say them out loud. Spend some time focusing on all that you are, not on all that you can no longer be. Your illness may be invisible, but you are not.

Today I want to share with you this very important video of a presentation Lynne gave in 2007 at a patients conference. It is important to note that she is speaking to patients here. This is not an intro to Fibromyalgia. She is speaking to her peers, to all of us.

The video is an hour in length, so keep that in mind when you prepare to view it, but please do watch it. It will give you comfort to know that the most recognizable Fibromyalgia leader understands and is actively working to better our lives and provide us hope for our future.

Here are some highlights Lynne covers in the presentation:

• We are all different
• You can get better
• There is no magic bullet
• What you are experiencing is real
• You can take back control of your life
• Listen to your intuition
• Give yourself permission to take care of you
• You are a person first, a patient second
• This is our journey

On this journey you are going to learn not only the things that are going to help make you feel better, but maybe even help make you a better person. I think I am much more compassionate. I think I am much more sensitive. I think I am much more aware. Lynne Matallana

videoplay?docid=6512742079926657347#

Are you able to work?

Did you have to change careers?

Do you work full-time or part-time?

Are you self-employed?

Do you work from home?

Are you on disability?

Can you work while on disability?

Topics for a very interesting conversation, right? (In fact the latest edition of Fibromyalgia Aware Magazine is focused on this topic. If you are not already subscribed, I highly recommend you do and start receiving this valuable resource.) But then you know what happens when you bring together thirteen passionate, enthusiastic and well-spoken women… I lost control of the meeting very early on, and had a great time letting the conversation go where it will. And I think the topic of work might have actually come up once or twice.

As usual, I was touched by many of the things shared, and impressed with the generosity and compassion of the group. There were sad moments and funny moments. Moments of anger and frustration, and moments of joy and hope. I took notes as I always do, and I thought I would share with you a few quotes from the day – starting with my favorite:

“You can’t be sad on rollerskates.”

“I’m rewriting my own life commandments.”

“My ego would love to do it, but I have to say no.”

“I do not fight my pain anymore. I breathe into it.”

“I am an athlete and competitor in my mind.”

I’m not sure if there is anything in my life I am more proud to contribute to than this group. I am usually left depleted after each meeting, but I happily give each ounce of my energy it takes. It fulfills a need in me for community and giving, and it hopefully fulfills a need for each member that makes the commitment to attend and participate – even on the days when their facilitator loses control!

It is remarkable to me the quality of people who develop Fibromyalgia and chronic illness. In fact I wrote a post on my Everyday Health blog with each person I know with FM in mind. I would love for you to read it. I think you may see yourself described there. Take a look and tell me what you think: Remember Who You Are

Yes, I can! I am honored to say, I have been asked by Everyday Health.com to become their new featured Fibromyalgia blogger. It has been in the works for sometime, and I have been quietly posting for a few weeks now, but I have held off announcing it until their new blog software and redesign goes live. Unfortunately there have been delays, and since the link to my blog will remain the same, I have decided to go ahead and share my happy news with all of you.

Fibromyalgia Health Haven is the name of my Everyday Health blog. I will be contributing an article once a week, most likely every Tuesday. The articles there will still have my personality, but will be slightly less conversational. Where this is my happy place, Everyday Health will be more like a place of business. A few of the posts there now are shared here, but starting this week forward, each post will be unique on Everyday Health. I will probably do as I am now and give you a little heads up and nudge to my posts there, or if you are a tech savvy reader you can add my new blog to your reader and be notified of my new posts that way.

I will also update you when the redesign is complete. They are working hard on building and developing a clearer Fibromyalgia community, with more information and resources. It is a great and growing site. And if you register with them you can start your own member blog if you are interested. I have said it many times before, writing is therapeutic, and I recommend it to everyone living with chronic illness. But if you are considering starting a blog through Everyday Health, I advise you wait until the new blog software is up and the redesign complete. Their current software is not very user friendly.

I am very happy and excited to have been asked by Everyday Health to be a featured blogger. They found me here on Fibromyalgia Haven, and felt I have a strong enough voice and write interestingly enough to be a featured part of their health community. Is there a greater compliment? I am honored, and look forward to contributing my patient perspective to the Fibromyalgia resources on Everyday Health. I hope you will visit me there like you do here. Thank you all for supporting my voice here, and contributing to this opportunity for growth. You inspire me!

P.S. Today’s EH post is on working with Fibromyalgia. I would love it if you would leave a comment over there with your thoughts on the subject. Thanks!

I listened to the song for the first time with tears in my eyes. It is a beautiful anthem of love – enduring love between spouses who live daily with the trials and uncertainty of chronic illness. Chronic illness is not just hard on the patient, it is hard on everyone who loves them and has to watch them suffer. This song made me want to shelter and protect my husband from all the heartache my illness has caused him. Just as Rob sings in Her Diamonds, if I feel bad my husband does too.

Not a day goes by that I don’t think about how blessed I am to have a husband who loves me, protects me, supports me, honors me, and still thinks I am fabulous even on the days when washing my hair would be as difficult as climbing Mt. Everest. But when he is hurting, do I always remember to do the same for him? Probably not.

Her Diamonds touched my heart and gave me perspective. I just had to share it with you all. This post is in honor of my husband and all that he gives of himself. He deserves so much more than this dedication. He is my rockstar!

Lyrics to Her Diamonds

Oh what the hell she says
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doin’
Like I don’t know now

By the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind
I can just imagine
And I don’t know what I’m supposed to do
But if she feels bad then I do too
So I let her be

And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down

She sits down and stares into the distance
And it takes all night
And I know I could break her concentration
But it don’t feel right

By the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there’s something less about her
And I don’t know what I’m supposed to do
So I sit down and I cry too
And don’t let her see

And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down

She shuts out the night
Tries to close her eyes
If she can find daylight
She’ll be all right
She’ll be all right
Just not tonight

And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down

Thank you Michelle at Life in the Autoimmune Lane for sharing this song first on your blog and introducing me to the anthem of my marriage!

You were just an infant the day I had my accident that eventually developed into Fibromyalgia. What is one of your earliest memories of having an aunt with Fibromyalgia?

I remember that you were not always able to pick me up so much or do things together like I did with other people in the family, also I remember when we would go to places like amusement parks or Tustin Tiller Days you didn’t always go on the rides with me and C.J. (C.J. is her older brother/my nephew)

Your mom has always been very caring and compassionate about my health issues. Do you remember any advice or information she gave you about Fibromyalgia?

Yes, she always would tell me, and still does, “your auntie isn’t having such a good day so don’t be too hyper or be too much of a bug.”  and that always made me know that you were not feeling too well and I understood that it was your Fibromyalgia.

Even when I am not feeling well, we always manage to have a lot of fun together. What is one of your favorite memories of a time we spent together when I was not feeling well.

My favorite day together over all, and you were not feeling well was when we went to the beach and fed the squirrels and then went to Cabo Grill and met Bam Margera and Tony Hawk.

That was a good day! The very next day we went to the beach again and got caught in a rip-tide. It was very scary for both of us, but I hated not being strong enough to rescue you. Thank goodness we were both safe. You spent a lot of time with me last summer. How did it affect you when I was not feeling well?

I always knew when you weren’t feeling well, it would upset me sometime because I knew that we weren’t going to be spending so much time together or we wouldn’t do much or go places and it was summer so I wanted to but I always understood that when you don’t feel well that you say no to something like the beach and I would know that means no.

So on the days when I was not up for going to the beach and we stayed home we still managed to spend quality time together. What would you say is your favorite way to spend time with me when I am having a “bad” day?

I like it when we just sit around and watch tv but my FAVORITE thing is poker=] (I taught Dani to play poker several years ago, and she is a shark! If you sit down to play with her, expect to lose all your money.)

If you could use just one word to describe Fibromyalgia what would it be?

hmmmm…. painful

What advice would you give to a friend or classmate with a loved one with Fibromyalgia?

I would first of all tell them that I have an auntie with Fibromyalgia and I would tell them its a disease that controls your body and sometimes takes time out of your life because you are so sore from doing something the day before and I would tell them that whoever it is that has Fibromalgia wouldn’t be able to do the things they used to be able to do and I would explain to them some examples that happened between us and the family concerning your condition.

Do you think we would be closer or that I could love you any more if I had never been diagnosed with Fibromyalgia?

NO!!! I could never ask for anymore of your love because I know that you love me a lot and we are already so close I don’t think we could get any closer to each other. I love you so much and you are my favorite auntie and the best auntie a niece could EVER have and just the time I spend with you and the love we share is enough for me=]

How much of your participation in this interview had to do with the $20 I promised you?

Hahahaha well you just told me right now so I was just doing this because you asked me to and because I think it was awesome to do something like this. I don’t need money to tell you how I feel about you and your condition and I love you so much you don’t need to give me money this was something for fun.

You are a wise and loving niece Dani. I am a lucky and proud Auntie!

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In my previous posts I listed the main social networking sites (part 1) and group forums (part 2) available if you are looking to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if you are living with Fibromyalgia or most any chronic illness. For this post I am going to focus on general resources available, like blogs and websites. Again, this is just a partial list of what is out there, so feel free to leave recommendations in the comments if you know of a forum or support group I did not cover.

Blogs

If you are reading this post then you are clearly already a reader of blogs and quite possibly have several you read and may even maintain one of your own. Blogs are a great way to share information and ideas. Fibromyalgia Haven has become my favorite place to go everyday. I have the chance to express myself here like I can nowhere else. My mental and emotional outlook is vastly improved since I began writing here, and I am constantly researching for new things to write about and share so my knowledge and understanding of Fibromyalgia has increased tremendously. I am proud to call myself a blogger!

I could not begin to list the multitude of Fibromyalgia blogs out there. I think I find a new one each day. But I will list several great sites which contain blog directories and make it easier for you to search a specific blog category. Here are links to the ones I am most familiar with followed by a description taken from their own site:

Alltop – Alltop is an “online magazine rack” of popular topics. We update the stories every hour. Pick a topic by searching, news category, or name, and we’ll deliver it to you 24 x 7. All the topics, all the time.  (P.S. – Have you noticed my Alltop “best of the best” badge I proudly display on my sidebar? Cool, huh!)

Blog Catalog – BlogCatalog is more than just a social community for bloggers; we are one of the largest blog directories on the internet. Whether you are looking to search blogs, connect with bloggers, learn more about blogging, or promote your own blog, BlogCatalog is for you.

BlogHer – The community for women who blog.

Bloglines – We track your favorite news, blogs, weather, and classifieds so that you don’t have to.

Delicious – The tastiest bookmarks on the web.

Digg – Digg is a place for people to discover and share content from anywhere on the web.

Google Blog Search – (Google needs no description.)

Networked Blogs – Blogs are social networks. Are you networked yet?

WordPress Blogs – Just Another WordPress Weblog

Yahoo 360 – A place that’s all about you to share with friends and family.

General Resources for Education and Information

Many of these sites have monthly newsletters you can sign up to have their top news e-mailed directly to you. It is a great way to stay on top of current events and news in the ever-changing Fibromyalgia community. 

National Fibromyalgia Association -The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.

Fibromyalgia Network – We’ll keep you current on fibromyalgia treatments, coping tips, and research to enrich your life.

Fibro Center – A community of education, support, and understanding for people with Fibromyalgia. (I hesitated to list this site as it is sponsored by Pfizer, but if even one person finds it useful then it is worth putting my personal bias against Lyrica aside.)

Fibro and Fatigue Centers – Whether you have been diagnosed or misdiagnosed, whether you have been searching for years to get your life back to “normal” or you are just starting to feel it slip away – there is help and hope!

Fibro 360 – A community of Hope and Understanding for People suffering from Fibromyalgia

FibroTalk – Online Community Support

We Are Fibro – The Social Support Network for those Living with Fibromyalgia

Please feel free to add your blog or favorite site in the comments.

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