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!