Sunday, September 13, 2009

30 Things About My Invisible Illness You May Not Know

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: Jan 2008

3. But I had symptoms since: Aug 2006

4. The biggest adjustment I’ve had to make is: Doing less, learning flexibility, not lifting/moving things, and having to cancel on friends/family in ways I never thought I'd have to.

5. Most people assume: I'm exaggerating, am just a wimp, and/or can't possibly be in that much misery. The thing is, I'm often way worse than I even let on. More often than not, I hide it completely outside the home.

6. The hardest part about mornings are: Waking up and pushing my way out of bed through the stiffness.

7. My favorite medical TV show is: None. Out of regular, current TV shows, Smallville, Heroes, Chuck, and NCIS are my favs.

8. A gadget I couldn’t live without is: My heating pad and new wrap-around-the-neck-microwaveable-made-of-rice-thingy. Furniture I couldn't live without is my recliner. *Edited to add: The headset for my home phone. I can't talk on the phone anymore at length unless I have the headset on.*

9. The hardest part about nights are: Lying awake, staring at the wall, pleading for an ounce of sleep.

10. Each day I take 6-20 pills & vitamins. (No comments, please) - The vitamins depend on what treatment I'm on at the time.

11. Regarding alternative treatments I: look forward with hopeful anticipation. I know that alternative treatments can work with the right specialists, regimes, hard work, and determination. Too bad the only good chiropractor/acupuncturist I have found is 30-40 minutes out of my way (one way). With an already bad commute, that makes it virtually unbearable and very, very stressful and exhausting. So what can do me some good, ultimately does a lot of harm too. Right now though, I am concentrating on some other things and hope to get back to alternative treatments maybe sometime next year.

12. If I had to choose between an invisible illness or visible I would choose: visible, I'm guessing. When I have something visible like the flu, I get more attention/help. People don't know/understand what they can't see and therefore often forget you have it, thereby treating you normally and not doing things for you. For your mental health, sometimes that makes you feel good, but physically it's the pits.

13. Regarding working and career: I'm sooo thankful to work for such a great place and great boss where I have some flexibility. And I'm so thankful for the ability to work! I know not every Fibro person is able to. I do what I can to be the best I can be for work, and sometimes that means not being able to be who I need to at home. Or I can push myself too hard at home, and be unable to get to work. It's so frustrating...but again, I am thankful I can even do that.

14. People would be surprised to know: I have a lot of fear, anxiety, and insecurities. I try to smile even when I feel like I could die.

15. The hardest thing to accept about my new reality has been: Disappointing people. No longer feeling like myself. Feeling stuck in a stranger's body. Feeling more depressed and anxious than ever before because I'm so miserable physically. Feeling lonely even when I'm not alone. Feeling afraid I'm going to die from the pain & severe fatigue. Struggling with why people can't accept invisible illnesses and love in spite of it. Not being able to get those closest to me to understand. Being told by others what to do to help my own illness, all the while I'm probably way more up-to-date on it than they are, and they can't understand that with such a limiting illness, you can't go after treatments with all you've got. It could mean not walking for a week. I just want to be loved, encouraged, and supported in spite of the illness.

16. Something I never thought I could do with my illness that I did was: Weight lifting. I was told by someone a while back that Fibro people aren't supposed to lift weights. My trainer said otherwise. And despite the pain, he was right. I can do it. It'll actually really help me to keep doing it. But pushing through the pain is incredibly difficult. Without a trainer, I don't think I'd be able to continue.

17. The commercials about my illness: get muted in our house very quickly...they are very irritating! I know all other Fibromites I've talked to about this also feel the same way. Those commercials do not shed the best or most accurate light on Fibro. And the people making the commercials clearly do not have Fibro.

18. Something I really miss doing since I was diagnosed is: kickboxing. I sometimes watch the other ladies at my gym who are doing it and I admittedly get a bit jealous. I miss it. a lot.

19. It was really hard to have to give up: living. having fun. It's hard to do either in so much pain. cleaning. cooking. grocery shopping. Even if i didn't give them up fully, I did in part, and they lost any sense of fun or enjoyment because doing them usually brings onslaughts of horrific pain.

20. A new hobby I have taken up since my diagnosis is: blogging, researching other chronic illnesses, and helping increase awareness. 

21. If I could have one day of feeling normal again I would: celebrate, kickbox, take a long walk or bike ride or both, clean my house upside-down, go shopping, play pitch & catch or frisbee with hubster, and/or go into Chicago and wander all over downtown.

22. My illness has taught me: to be more compassionate and understanding when others are going through pain or illness. Sometimes people-watching at church or just out and about I'll glance around, wonder who all walking or driving by me is also fighting an invisible illness or cancer, and I'll say a prayer for them. You never know.

23. Want to know a secret? One thing people say that gets under my skin is: "Why don't you just take some Ibuprofen?" - If it was that simple believe me, I'd be doing it! But being on Ibuprofen at incredibly high doses for the rest of my life isn't realistic. Also when they ask "Are you getting better?" or "Do you still have that Fibro problem?" - The answer is DUH! ::smack yourself on head:: - I love what JessiBee says on Fibro Blog: "Please, please don't ask me if I'm getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It's all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts."

24. But I love it when people: Offer to help and just go right at it, without making me try to come up with an answer to "can I help you with anything?" Well, yes you can, but I don't want to respond with a yes and make you feel like you have to, and I wouldn't even know for sure what it would be even if I do need some help. Just do it for me.

25. My favorite motto, scripture, quote that gets me through tough times is: Isaiah 41:10 and "Make time for the quiet moments as God whispers and the world is loud." ~Unknown

26. When someone is diagnosed I’d like to tell them: research a lot and be your own advocate. Know the most as possible about your own illness. Stay strong.

27. Something that has surprised me about living with an illness is: how misunderstood invisible/chronic illnesses can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: When a dear coworker of mine (who was relatively new and I didn't know really well) was with me at a conference, where I had to carry a heavy backpack around because of the distance from our room (I have too many things I need close by and accessible like meds, water, etc), she just took it from me. Anytime we were walking around together, it was on her. Thanks Amy, you are a darling. I will never forget that gesture, it meant the world to me. And the sweet, nonjudgmental way you did it was so great. Also back in July when Tim's sister and her family stayed here, and she helped with so much stuff around the house and also put her kids to work...we caught up on gardening, cleaning the attic, she helped with all the cooking, and so on. It was so incredibly sweet of her.

29. I’m involved with Invisible Illness Week because: I have an invisible illness and want to help draw awareness to it and other invisible illnesses.

30. The fact that you read this list makes me feel: happy. Thank you for reading!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at


blueviolet said...

I can't even imagine what you must go through on a daily basis. I'm so sorry. I wish there was a permanent fix.

Melissa, Multi-Tasking Mama said...

so true, so true, so true! Thanks for sharing =)

Denise @ Sunflowers, Chocolate and Little Boys said...

Great list...Im glad I found your blog.