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…

As each meeting does, last night validated all of the work I put into organizing the group, because each meeting and each interaction rewards me, supports me, and encourages me. I feel blessed and honored to be a part of the group, and proud that I played a part in bringing us all together. After each meeting, members are asked to rate the meeting and leave a comment about their experience. I would like to share with you a comment left by a new member attending her first meeting.

Dannette called the group “a bunch of scientists” once and that’s a pretty apt description. Very rarely have I ever run into people who were so interested in learning without having a (well at least I didn’t sense one…) hidden agenda. The people were kind and generous with both listening and talking and the interaction is a lot of fun. It is very obvious to me that Dannette nurtures this group and puts a lot of careful thought into how to best meet the needs of the members. The people who have joined the support group but have not yet attended a function are really missing out. This truly is a support group.

 

Can I tell you how happy this comment made me. Of course I appreciated what she wrote about me personally, but it was her overall impression of the group that pleased me the most. She sees the group as I do – kind and generous people who respect and support each other, and who are actively interested in improving their lives. We are a realistic bunch and recognize that there are so many layers to Fibromyalgia, and each book we share, topic we discuss and positive results we report is just a part of a piece of this million piece puzzle. But together we are a much greater force than each of us is alone.

A group like this does not just happen. First it takes someone to decide to make it happen. And that someone needs to be commited – despite their own health issues – to nurture the group and put “a lot of careful thought into how to best meet the needs of the members.” But that is only the beginning. Then people need to join the group. And then the people who join need to trust their instincts and honor their need for support by participating. And when all those pieces come together, a night like last night happens – a night of sharing and caring and community.

I can’t tell you how much I wish I could create a group just like this for each and everyone of you. Everyday in comments on my blog, on Twitter, in message boards, I see the need for more connection, more support and more interaction for people suffering with Fibromyalgia and other invisible illnesses. My heart literally aches with the need to help. I feel like it is my purpose, and nights like last night reinforce my commitment.

So what am I going to do about it? I have been brewing a plan for awhile now. It is a slow brew due to the faulty filter and machine I call my brain, but it is brewing non-the-less. My blog Fibromyalgia Haven is just the beginning of my passion to create a Fibromyalgia community for everyone, like the small FM community I am lucky enough to have created here locally. I am lucky to have this group, but the key is, I created my own luck.

“Diligence is the mother of good luck.” – Benjamin Franklin

“Luck is what happens when preparation meets opportunity.” – Seneca

“I’m a great believer in luck, and I find the harder I work, the more I have of it.” – Thomas Jefferson

And that is the truth about luck. The harder I work, the luckier I get. I am here in this place, poised to heal and to help others heal, because I have worked for it. I am going to continue to work at it. It is the commitment I make to myself and to anyone who wants to join me on my journey. You are all invited, but it is up to me to make sure the journey reaches everyone, even those of you so far off the beaten path that you are certain no one will ever find you or care that you are there. I care! And as my wise friend Hillary reminds me often – you are loved, and you are not alone.

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.

Procrastination Tales Of Mere Existence

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

So I finally signed up on Twitter. I think initially I was hesitant to add one more thing to my already busy schedule, but after less than 24 hours on Twitter and 4 updates, it is much more fun than anything else. All of this social networking – Facebook, Twitter etc. is developing a lot of narcissistic personalities don’t you think? It is all about me, my thoughts, and what I am up to at any given moment. Yeah! It’s all about me!

No really, Twitter is a great way to learn what is happening in the Fibromyalgia community – what people are talking about, interested in etc. I have already found several new blogs and resources and look forward to learning how to use Twitter to improve my blog.

So if you want to know what is going on with me and my never ending research into Fibromyalgia – even more than I already reveal on my blog, you can follow me on Twitter here: Fibrohaven.

Once I figure out how to add my twitter updates to my sidebar you will be able to see them there. I am so not savvy when it comes to technology!

72 hour update – Twitter is still fun but in a frantic, “oh my gosh, I don’t think I can keep up” sort of way!