First let me start by saying I am thrilled to be working again. Thrilled that my body is cooperating for the most part. Thrilled to be out in the world, making connections, networking, and feeling like a productive person again. Is it horrible that my self worth is so closely tied to my ability to make a paycheck?

All my work on FibroHaven was satisfying emotionally and spiritually, but never financially. I LIKE MONEY! I like the freedom it brings. I like contributing to my household again. I like seeing a light at the end of our Debt Highway.

That being said, I have missed FibroHaven – missed my blog and facebook community, missed tweeting with the FM community on Twitter, missed the local members of my support group and our therapeutic meetings. It has all been neglected.

I think we all clearly understand about how hard it is to find balance living daily with chronic illness. It is always a matter of “If I do this, I know I will not be able to do that.” Prioritizing, making sacrifices, coming to terms with limitations, and on and on. Living well becomes a matter of balancing options and making smart choices.

I can tell you the smart choices I have been making for the better part of a year are really paying off now. I completely contribute my ability to work to the elimination of gluten from my diet and to my practicing yoga. My body has responded and rewards me every day. Even on bad days, I recover more quickly and have new tools – breathing exercises, stretching, etc. – to help me through.

But my heart is still in FibroHaven. So now it is up to me to find the balance. I know I can. I know I will.

And breathe…

We all know that. So if change is constant, the only variable then is in our ability to adapt.

I was watching the Amazing Race Sunday night. It really is an interesting study on human nature and the ability to adapt to constant change – to the unknown. It is remarkable how certain temperaments rise to the top as they excel at adapting to unknown situations, while others battle themselves and their own teammates while flailing wildly at the unknown.

The ever important clue box is a great example of what I mean. Teams are given a general direction and told “that is where you will find your next clue.” So each team approaches the area not sure exactly where they must go.

Some teams calmly read their directions for more clues and talk it through, looking around together until they spot the box.

Other teams divide up to cover more ground, keeping each other updated and staying connected with their voices.

Then there are the teams that run around wildly yelling at each other, oblivious to the details of their surroundings. These are the teams that usually run past the box three or four times before spotting it. They are frantic and manic. They are out of breath, angry with each other, and completely out of tune with their environment.

For years my husband and I have joked we would make a great team on the Amazing Race. If I had to judge, I would say we would be most like the first team type – sticking together to take in our surroundings and find the clues. In fact, I am certain that is the kind of team we would be.

Change is not coming. Change is here.

Last Thursday my husband called me in the middle of his work day, except it was no longer a work day for him. After surviving many rounds of layoffs, this time he was the one terminated. He was calm when he relayed this life altering news to me. “Oh no, oh no, oh no, oh no,” was the only thing I could say. But he calmed me down and told me the one thing I believe to be universally true, “We are going to be okay.”

As soon as I slowed down long enough to recognize his calmness and listen to the truth in his words, I knew it was true. We are going to be okay.

Where we have been.

After the accident in late 2006, I tried to get back to working full-time, but my body could not handle the stress of it. My symptoms continued to worsen to the point that we both realized what I needed most was time. After much consideration, and resolving ourselves to the financial adjustments we would need to make, I quit working and have been focusing on my health and wellbeing ever since.

FibroHaven is the product of my time away from working, and I am so proud of what I have created – my blog, my support group, and my facebook community. It is through all of the FibroHaven components that I have learned so much more about who I am, why I have Fibromyalgia, and what I can do to improve my quality of life. I have a new spiritual awareness attained through the many mind-body practices I have introduced to my life, like yoga and meditation.

Each step of my journey away from work and with FibroHaven, whether I was struggling or succeeding, my husband was right there with me – taking it all in, and trying to interpret what it all means.

The time away from the stress of working has been a true gift to me. It has not been easy on our lifestyle. We gave up a lot of the comfort and luxuries that comes with two incomes. I am not healed, I am not cured, but I am better. Well enough that I know it is time for me to contribute again.

Strangely enough, something happened this week to reinforce that it is time for me to change my focus. Everyday I spend a lot of time on FibroHaven’s facebook page. It was a great complement to my blog, and a quick way to share timely, relevant links and Fibromyalgia resources. I was very happy with the work I had been doing.

Monday morning I shared my most recent blog post there, and then went off to my noon yoga class. When I came home and sat down at my computer I headed straight for facebook, but my page was gone:

The page you requested was not found.

It was like a shot to my gut – another loss. All that work gone. Disappeared! Sickening.

Today, I am kind of over it. Sad, yes. Disappointed, sure. But I recognize how much time and effort I spent on it and I realize that my time and effort are best suited elsewhere now.

You see I am part of a team, and my team has had a set back. But we are not out of the race. No way!

Where we are going.

We are not out of the race, because together we have calmly taken in our surroundings and recognized what we need to do to move on. My husband is a talented man. He will find work again. But in the meantime, I need to come off sabbatical and contribute. This means less time to spend on FibroHaven.

Not to worry. My blog is here to stay. I will just have less time for all the ancillary projects – like the now gone facebook page, and like my local support group. I am cutting meetings from two a month down to one, and I will be asking for someone to step up and assist me in running the group. There were also several other things I have been working on that will either not happen, or will have to wait.

Yesterday was our 6 year wedding anniversary. We spent the day focused and excited about our future. Change is here and we are ready to adapt – calmly, and together. I can’t wait to see where the next clue takes us.

Last month I started a FibroHaven page on facebook. I have been promoting it quietly with a link on my sidebar, and with little fanfare we are already up to over 200 participants. It is meant to be a compliment to my blog and a quick way for me to share current articles and information. You do not need sign up on facebook to participate. Just click on this link to FibroHaven on facebook and join in on the conversation. If you are signed up on facebook, click on the “become a fan” button and the daily posts will feed automatically to your home page. I hope you enjoy this new format of FibroHaven. I know I am!

Today’s FibroHaven facebook post is shared from Lisa at invisibleillnessweek.com. In preparation of Invisible Illness Week, Sept 14-18, she has created a fun exercise to share 30 things about ourselves. If you have a blog of your own you may want to participate by sharing your answers there, but if you do not have a blog, you can share you answers in a discussion at FibroHaven on facebook. Lisa has created a great way to express ourselves to each other. Maybe this will be the tool you need to explain your experience and struggles with chronic illness to your loves ones. It is worth the try!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia

2. I was diagnosed with it in the year: 1997

3. But I had symptoms since: 1996

4. The biggest adjustment I’ve had to make is: Losing my ability to be a full-time, productive worker. So much of my self-worth was invested in my career and it has been hard to redefine myself and understand my new purpose.

5. Most people assume: That my symptoms are mild. Because I am so  active in growing FibroHaven’s support community, I often hear remarks like “I wish I had your energy.” or “I wish I could do as much as you are able to.” I am excellent at hiding my misery. My husband sees it, and tells me I should not sugar coat how I am feeling. I talk lightly of my symptoms because it helps me and my mindset not to dwell. It is really for selfish reasons that I do not share the depths of my symptoms.

6. The hardest part about mornings are: Pain, stiffness, fatigue, dizziness – and my poor expectant puppies who are always so joyful in the morning, and confused by my sluggishness.

7. My favorite medical TV show is: I guess it would have to be ER since I watched it from its inception to its end.

8. A gadget I couldn’t live without is: My toes! Maybe not quite a gadget, but I can pick up almost anything with my toes. They constantly save me from the pain of bending over.

9. The hardest part about nights are: Looking back on the things I had planned to accomplish that day, but did not get done.

10. Each day I take 1 or none pills & 3 vitamins.

11. Regarding alternative treatments I: Am a huge proponent in yoga and meditation, but would love to be able to try more like acupuncture, massage, & biofeedback. It is so cost prohibited (see number 4). I am always looking for new cheap/free alternative treatments and find many by joining groups on Meetup. Some charge small fees, but many do not.  I have even found free yoga classes at local libraries and free meditation at a local center.

12. If I had to choose between an invisible illness or visible I would choose: Had to chose – I would chose the invisible illness I currently have as I have 13 years of experience in dealing with it. I would never choose to start over with a new illness.

13. Regarding working and career: I miss being the sassy, successful sales rep I once was. I miss connecting with people on that level. But I love the direction of my new career as a freelance writer. I can work from home, and around my symptoms, but it is not yet as financially rewarding as my previous career. I miss the freedom money brings. I miss dressing up to meet a new client. I miss feeling really good at something.

14. People would be surprised to know: That I am not as in control as I appear. I am full of pride and bravado. It makes me feel less vulnerable.

15. The hardest thing to accept about my new reality has been: Letting go of my old reality, and all the control I had. Type A, control freak faced with a debilitating illness… It may take me 13 more years to accept my new reality. Except I am convinced in 13 more years “debilitating illness” will not be a part of my vocabulary!

16. Something I never thought I could do with my illness that I did was: Support and encourage others. In the depths of my despair, when I was looking for guidance, I never thought I could become a voice for others. But I have, and it has helped me more than I would ever have thought possible. Thank you for letting me be a voice for all of us.

17. The commercials about my illness: Make me cringe! Take a pill, and then life will be all sunshine and rainbows. BARF!

18. Something I really miss doing since I was diagnosed is: Dancing… Moving my body in a carefree and painless way. I would sometimes go out with my friends and dance for 6 hours straight. I would just feel the music and let it move my body. I can’t believe that this body was once able to move like that. But it was, and I miss it.

19. It was really hard to have to give up: Should I talk about my sales career again, or would that be redundant? It was very, very, very hard for me to give that up. Almost like starting your own business, turning it into a great success, and then just handing it off to someone else to reap the benefits. Even worse, that someone lost all my best accounts and ruined my territory. Such a shame!

20. A new hobby I have taken up since my diagnosis is: I was going to say my blog, but that is my passion, not my hobby. Then the answer must be poker! My husband and I began playing in a regular Friday night came several years ago. I seldom missed a week, even if I was not feeling well, because poker is sometimes the only thing that can distract me from my pain. There is a level of focus and concentration that is needed to play well that takes me right out of my pain and fatigue. And I do play well. Poker is fun!

21. If I could have one day of feeling normal again I would: Take my hubby and my dogs and backpack around  Catalina Island. Something we did back in my health days (minus the dogs – no dogs allowed – but this is a fantasy, right). It is like having your own private island with isolated beaches to explore. I miss the feeling of strapping all that I need onto my back and heading out for the day. Freedom! A day of freedom from this body would be priceless!

22. My illness has taught me: That I am not invincible. That I am not in control. That my pain is there for a reason. Still working on figuring out the reason.

23. Want to know a secret? One thing people say that gets under my skin is: “It could be worse.” They are right, but pointing out that it could be worse, does nothing to actually make it better.

24. But I love it when people: Treat me like they always have – like I am still an intelligent, funny, viable person – like I still matter.

25. My favorite motto, scripture, quote that gets me through tough times is: “It could be worse.” Okay, no –  just kidding! That is what I meant by still being funny. We have to have a sense of humor, right?

I don’t think I have a saying that gets me through tough times, but I do love and believe in the saying “The harder I work that luckier I get.” There is going to come a day when my symptoms will be in control, and I know I will be considered lucky, but I can assure you luck doesn’t just happen. It is going to take a lot of hard work for me to get that lucky.

26. When someone is diagnosed I’d like to tell them: There is hope. You are not alone. You are not crazy. What you are experiencing is real.

27. Something that has surprised me about living with an illness is: That my marriage has thrived along the way. Somehow we have managed to grow together instead of apart. You probably think I am one of the lucky ones – and I am! – but again, luck is not random. I am lucky and our marriage is strong because we have worked hard at it, and we are still a work in progress. I am still learning to communicate and to trust and to let go.

28. The nicest thing someone did for me when I wasn’t feeling well was: Accepted me and my limitations, and did not judge or try to fix things. They were just there for me while letting me be.

29. I’m involved with Invisible Illness Week because: Because it is important. Because Fibromyalgia is invisible, and like so many other chronic illnesses it is misunderstood. And because it is up to us to help people understand. We cannot just sit back and will them to understand. We have to open the doors of communication and use productive means to enlighten everyone to our invisible illnesses. Not everyone will get it, but with each that does we are that much improved.

30. The fact that you read this list makes me feel: Like you care. This is so much longer than I anticipated it would be. I had a lot to say, and everything I said was pure and honest. It felt really great to do this exercise, and I appreciate you for taking the time to read it.

This article is free to reprint on your blog, ezine, web site, etc. Just leave everything “as is” including the resource box at the bottom. Thank you!

If chronic illness or pain is a part of your life, the odds are that at one point you have been requested by a physician to keep a log about your activities and pain levels, especially what led up to your pain being most intense. He may have suggested that you write down specific activities, your diet and exercise behaviors, and even your patterns of sleep.

If you have attempted to take this on and do it thoroughly, you know that it can be an overwhelming feeling to keep track of all of your activities and still maintain a sense of normal life. He can be extremely helpful, however, to you and your medical team, to have a written record of your activities, diet, etc. to help discover what is it is causing you the greatest pain. Was that extreme flare caused by a minor food allergy, the weather conditions, or that you were up all night with friends?

It is somewhat ironic that while we may find it a burdensome task to record what we are eating, who we are with, how much we slept, and how we are feeling, millions of people are doing this daily on Twitter. They write what they ate for lunch, if they have a migraine, and if they are up at 2 a.m. working. . . and they call it fun!

If you have a chronic illness, Twitter can be an amazing tool to use as a pain diary. This social networking tool has been successfully used to help people maintain logs on their diet, exercise, and even the commitment to stop smoking. Why should we not use it to keep accurate records of our chronic illness and pain levels?

Here are 5 steps to put this into place:

[1] Create an account at Twitter just for your chronic pain logs. If you already have a Twitter account, make a new one, and let it remain private. If you look under “settings” you will see the option to make your account private, meaning that you will have to approve any followers before anyone can see your Twitter account. Since this is private medical information, we recommend not approving anyone. If you are already Twittering this can seem a bit strange because you typically want to increase the number of followers.

[2] You are now ready to start writing your posts. You cannot write more than 140 characters, however, this keeps it a simple task and not too overwhelming. Feel free to use it in any way necessary, for example, submitting more than one post to describe a special circumstance. You can send posts from your cell phone, not just from the computer, so set up this option in your account to make the most of it.

[3] If you don’t know where to start, begin by posting about any major events or behaviors that are not part of your typical day, and how your body responded to them. For example, if you awake feeling horrible, ask yourself has the weather change significantly? Twitter the weather. Are you taking the same amount of medication as you typically do? Were you active or solitary yesterday? Post whatever information may be valuable to you and your medical team at any right in your treatment.

[4] Before you go to a doctor’s appointment, log on to your Twitter account and print out the posts if your doctor would like acopy. Highlight any major changes in your patterns of pain.

[5] If you already use twitter for personal or business reasons, consider using a service that will post to more than one account at a time so that you are regular tweets that share where you are and what you are doing can also post to your twitter chronic pain log without any additional effort.

The market for Twitter applications will continue to grow and there is no doubt that’s those considering medical Web 2.0 tools will come up with some fancy (and complicated) ways to record your pain levels. But for now you can have a thorough log of your chronic illness and pain levels in just minutes at no cost. You can’t beat that!

Lisa Copen is the founder of Invisible Illness Awareness Week held annually in Sept and featuring a free 5-day virtual conference w/ 20 seminars w/ 20 speakers. Follow II Week on Twitter for prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!

Social Networking Sites

Twitter – The day I wrote Conversation on Isolation I hopped onto twitter and posted the following comment: “Twitter is a great way to combat the isolation of Fibromyalgia and chronic illness. Bravo to everyone who makes the choice to reach out.” Of the 258 comments I have written on twitter, this one received the most responses and re-tweets (reposting of my comment by fellow tweeters to help spread the message). Twitter is a great way to connect with other people living with Fibromyalgia and chronic illness. Last week I left a brief tweet that I was not feeling well enough to participate on twitter, and I received many well wishes and encouraging responses. It moved me deeply. I highly recommend giving twitter a try. Here are a few tips.

1. When you create your profile keep in mind the kind of people you want to connect with. If you have Fibromyalgia, are a passionate reader, love to knit, and are living a gluten free lifestyle, include all of that in your profile and it will help others with similar interests find you.

2. Upload a photo into your profile. It doesn’t have to be a photo of you. It can be a photo of an eggplant if you want. Go crazy. Be original. People are more likely to follow you if you have an image in your profile, and once you get active and start tweeting they will immediately identify you by your photo.

3. Make your tweets meaningful to your intentions. If you sign up and start tweeting about the tacos you made for dinner, that may not interest any of your followers, but if you include info on a great gluten free taco seasoning you used, then you are sharing meaningful and interesting information that will likely start a conversation.

4. Search other tweeters to follow with similar interests by using twitter search and keywords – ex: Fibromyalgia, #Fibromyalgia. The hashtag (#) placed before a word helps to organize the published updates which in turn helps with your search.

5. Join a Twibe. For every area of interest, there is a twitter group to join, and if not – start your own! I belong to twibes for Fibromyalgia, gluten free, bloggers, and writers. It is another great way to find people to follow and start making connections.

6. There are many, many twitter applications out there to help you. I have no specific recommendations, but if you decide to join twitter just do a quick google search to help find them. How is that for vaguely helpful!

7. Follow Fibrohaven on Twitter! Come on now. You know I am a lot of fun and I sometimes even have something useful to say!

Facebook – Most of us know facebook is a great way to reconnect with old friends, and to stay in touch with family members, but there are also many groups and causes on facebook to join.

I belong to Fibromyalgia Awareness. It is a global group with 12,877 members and over a thousand discussion topics. You can always find a conversation going on and I have met several women who I now call friends from this group. If Fibromyalgia Awareness is not a good fit for you, there are several other groups you can join like I Will Not Let Fibromyalgia Run My Life, or Fibromyalgia Sucks. 

There are also several blogs you can follow on facebook including Fibromyalgia Haven.  Each blog has its own page and message board so you can dialog with the blog’s author and other followers. It is a great way to create small intimate communities.

And if you just want to get away from Fibromyalgia for awhile and connect with people that love In-N-Out burger as much as you, there is a group for that too! In addition to Fibromyalgia Aware, I belong to a writers group and a group for fans of my favorite author (T.C. Boyle) just to name a few. Facebook is worth joining just to explore all of the possibilities. 

Meetup – Meetup is a great resource to find events and groups in your own community. Their motto is Do something • Learn something • Share something • Change something. Everyday someone is creating a new group on topics from Fibromyalgia and CFS, to book clubs and clubs for beagle owners, groups for personal growth and the law of attraction. You name it, there is probably a group for it.

Meetup is the site I use to organize my support group. For a small annual fee we have a wonderfully organized website with a message board and calendar to list our events. So even members who are never physically at a meeting can contribute and participate. I am also regularly being contacted by other meetup organizers and members looking to participate in a meeting or sponsor an event. Meetup is an excellent resource. Currently there are 78 Fibromyalgia meetup groups worldwide – 57 Chronic Fatigue, 75 Chronic Pain & 52 Chronic Illness. Maybe there is a group close to you!

Myspace – I am not active on myspace, but I did a simple search that came back with nearly 10,000 pages related to Fibromyalgia.

So you see, there are a lot of options just within these four examples. The best way to research them is to go ahead and create a personal profile so you have access. There is no risk or cost to you, and if it turns out not to be the environment for you, you can easily delete your profile. If social networking is not for you, maybe an online forum will be. Check back tomorrow for my post on the multitude of forums out there.

19/30

Procrastination is a behavior which is characterized by deferment of actions or tasks to a later time. Psychologists often cite procrastination as a mechanism for coping with the anxiety associated with starting or completing any task or decision. Psychology researchers also have three criteria they use to categorize procrastination. For a behavior to be classified as procrastination, it must be counterproductive, needless, and delaying.

[youtube=http://www.youtube.com/watch?v=4P785j15Tzk]

Counterproductive, needless and delaying ways I spent my time today – instead of getting my “stuff done.”

1. Spent two hours on Twitter reading any semi-interesting article someone tweeted about. Did you know it is National Prayer Day?

2. Posted two such articles on my facebook page. Worlds oldest dog turns 21 today. He is a senior wiener!

3. Checked e-mail.

4. Decided my hair was bugging me so went into the bathroom to put it in a ponytail. How did my bathroom sink get so unorganized?

5. Straighten bathroom.

6. Checked e-mail. Oooo good deal on T.V.’s at Costco.

7. Kicked the ball around the house a bit with Finley. Noticed he sheds a lot when playing ball. 

8. Vacuumed.

9. Really! No one has e-mailed me in the last 15 minutes?

10. Changed the tags for Fibromyalgia Haven blog description on facebook. No longer a blog about “Fibromyalgia,” “inspiration,” and “writing.” Now a blog about “Fibromyalgia,” “chronic illness,” and “personal essay.” That’s better!

11. Took my hair out of ponytail.

12. Checked e-mail.

13. Pondered my new tags. Not sure if all really represent my blog. Maybe use tags like “musings,” or “thought provoking” or “needs therapy.”

14. Googled the word “procrastination.” Found the awesomely funny video above. Discovered there are 23 videos on You Tube by the same person….

15. Watched videos on You Tube.

6/30