FibroHaven on Facebook
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.
Wow, you went deep! That validated a lot of what I have come to understand about you and how you chose to deal with fibro. Thank you…
I’d have to say that giving up my retail management job of 18 years was hard for me too, but it wasn’t the only thing that defined me. A lot of things define me, like being a mother, a writer, a wife, a friend, a daughter, and the list goes on.
It took a little while for me to remember that because the job was so much a part of my daily life that it consumed my thoughts of who I was. We tend to think that if we do something too much, that it becomes an obsession, and yet, if we are overachievers at work, we don’t seem to think we are obsessed.
Thank you! I really could relate to somuch of what you wrote!!! Keep up the great work, you’re an inspiration!
I really loved you’re answer regarding your marriage. It gives me hope, me and my bf of 2.5 years are really going through a tough time dealing with our relationship and the addition of Fibro. So thanks for the little glimpse of hope =)
Jenn
Thanks so much for sharing. I certainly relate. I too was a type A and like you I had to give up working away from home. The income loss has been a huge adjustment. Luckily my marriage has also thrived and my relationships with my friends have grown even closer. I have developed many ways to cope and alternative and complementary medicine is that path I have taken. Best wishes to you in all you do.
Thanks for sharing Dannette, you voiced some concerns I had not given much thought to, like a marriage surviving a chronic illness. Several times I have wished that I had taken the time to add detail to my responses like you did, but then I think,”Naw, it’s too late.” I’m glad you took the time.
I agree with all of it! Except…that I take more than I pill and have not gotten to that excercise part yet. Oh, and my meditation is more like daydreaming.
Thank you for sharing! It is very inspiring to hear how you are dealing with your fibro.
I agree with Trisha, you always inspire me! I love being a part of FibroHaven on facebook.
Thanks everyone for taking the time to read this and for leaving a comment. I appreciate each of you. I should add that as #31:
Q: What do you appreciate about your life now, that you would not have experienced were it not for your illness?
A: All the wonderful people I have connected with through my blog and our great online community. Thanks for sharing and connecting with me!