30 Things About My Invisible Illness You May Not Know: Fibromyalgia

September 12, 2011

invisibleillnessweek2011 30 Things About My Invisible Illness You May Not Know: FibromyalgiaIn honor of Invisible Illness Awareness Week, here’s my contribution to the “30 things” meme. Want to write your own? Feel free to write in the comments below, write on your own blog and link back here, or even add them to the Invisible Illness Awareness Week event on my FibroCoach Facebook page.

As far as invisible illnesses, I actually live with a few… fibromyalgia, migraines, TMJ disorder, tinnitus, IBS, gluten intolerance, Hashimoto’s, Raynaud’s… Things are mostly under control now, but back in 2008 I actually filed for Social Security Disability. You can read my story for more.

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: 2007.
  3. But I had symptoms since: the mid-1980s.
  4. The biggest adjustment I’ve had to make is: learning how to ask for help — and receiving it gracefully.
  5. Most people assume: there is nothing wrong with me because I look like there’s nothing wrong with me.
  6. The hardest parts about mornings are: waking up and getting my body going. Mornings & I have *never* gotten along well. (Check out my cortisol charts in this other post.)
  7. My favorite medical TV show is: Bones, does that count?
  8. A gadget I couldn’t live without is: my BookBuddy!
  9. The hardest part about nights is: trying to get my now “going” body & brain to wind down. (I refer you to the cortisol charts referenced above.)
  10. Each day I take 55 pills & vitamins plus sublingual sprays.
  11. Regarding alternative treatments I: absolutely believe in them! I get acupuncture and massage on alternating weeks. I also see a chiropractor, watch what I eat, take Chinese herbs, nutritional supplements, etc.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible… but I used to seriously consider buying a cane to carry around for the visual effect.
  13. Regarding working and career: I honestly don’t know if I could work a regular 40-hour work week. I can mostly live like I don’t have fibromyalgia… but I also own my own business, set my own hours, and work from home. I manage my energy by managing my appointments during the week. I don’t schedule things early because I’m not at my best early!
  14. People would be surprised to know: that Scott and I have decided not to have children, at least at this point, because of my fibromyalgia. While I’m able to live well with fibro right now, I don’t know if I could keep up with the extra demands of parenting.
  15. The hardest thing to accept about my new reality has been: to mentally live like I’m a sick person even when I’m doing well. I will never say that my fibromyalgia is cured because I know that how well I do depends on my actions, as well as things I have no control over. It’s such a delicate balance; one little thing could send my fibro into a down cycle. I always have to be on guard and take care of myself.
  16. Something I never thought I could do with my illness that I did was: last fall I walked a 5k for the first time. You can read that story here.
  17. The commercials about my illness: say that drugs can fix you. While there is often a time and place for them, drugs will never make you well. You must look at the underlying causes of why you are sick. Often, that’s our own bad habits. =)
  18. Something I really miss doing since I was diagnosed is: I can’t abuse myself like I used to. You know, staying up too late, eating all kinds of junk food, etc. =)
  19. It was really hard to have to give up: gluten — bread, pasta, etc… Okay, I’ll be honest. I still have relapses, but boy I pay for it when I do!  =)
  20. A new hobby I have taken up since my diagnosis is: Blogging!
  21. If I could have one day of feeling normal again I would: I feel normal most of the time now, but when I felt my worst what I wanted most was enough energy that I didn’t have to choose. I used to have to choose whether I was going to go to the store or take a shower or do the dishes or….
  22. My illness has taught me: that I don’t have to do it all myself. It’s okay to ask for help.
  23. Want to know a secret? One thing people say that gets under my skin is: “You could do that yesterday. Why can’t you do it today?”
  24. But I love it when people: offer grace and understanding.
  25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
  26. When someone is diagnosed I’d like to tell them: You must be your own best advocate. Listen to your body; nobody knows it as well as you do. If someone tells you something that you don’t think is right, even if it’s a doctor, stand up for yourself. Do your own research. Be your own best advocate. Nobody else will be as good as you.
  27. Something that has surprised me about living with an illness is: that it has given me a whole new mission in life — to help other women like me.
  28. The nicest thing someone did for me when I wasn’t feeling well was: offer to come help me paint my home office because I had a fibro flare part way through the project & couldn’t finish. (Thanks, Jen Hofmann, it wasn’t in your job description & you couldn’t actually come help, but the *offer* was still the nicest thing!)
  29. I’m involved with Invisible Illness Week because: I have an invisible illness, my clients have invisible illnesses, and more people need to understand what it’s like for us!
  30. The fact that you read this list makes me feel: honored and hopeful.

Other Invisible Illness Awareness Week posts you should read:

Now, would you like to write your own?

Feel free to pick and choose the ones you’d like to respond to — or make up your own! I’d love to hear from you!

{ 8 comments… read them below or add one }

Ellen September 17, 2011 at 10:57 pm

Thank you for this! May I ask what the 55 pills and vitamins you take every day are? I take cranberry pills, flaxseed oil pills, pain pills, multivitamins, ibuprofen, and antidepressants. I would like to know if you have any natural herbs you take that have been helpful. An email would be great. Thanks for giving me hope. :)

Reply

Tami September 17, 2011 at 11:51 pm

@Ellen – Thanks for leaving a comment! I do all this to give people hope. I’m glad I succeeded! Sometimes it feels like I’m throwing things out there to the wind – like my cherry blossom petals floating on the wind… so thanks for giving feedback! =)

The 55 pills are the individual number of pills. Some things might be several pills of the same thing, like something I take in the AM & PM. Still, they add up!! I started writing them all down here… but I think that’s going to be too long for a reply here. Wow. 55 adds up in writing too! I’ll email ya. =)

Reply

Tami June 21, 2012 at 2:45 pm

For anyone new reading this, I added a link above to the blog post outlining the 55 pills (mostly supplements) that I take each day. The list is constantly changing, so if you want to know what I’m currently doing, contact me!

Reply

Alic June 13, 2012 at 2:15 am

Hi, thanks for this. I did my first 5km walk for Race for Life on Sunday. Did it in 43 mins. Couldn’t have even thought about it without low dose naltrexone. I take 3.5mg per night after a really slow build up since Nov last year. Keep up the good work :)

Reply

Tami June 14, 2012 at 12:30 pm

You too, Alic! LDN is one of those “best kept secrets” that should be shared! Have you thought of going up to 4.5mg? That’s the normal maintenance dose for fibro.

Did you see my post about doing my first 5k walk in 2010? I wasn’t quite up for it this last fall, but I plan to walk that same 5k walk this fall. =)

Reply

Melissa August 5, 2012 at 6:30 pm

I enjoyed reading this very much.

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Tabatha September 11, 2012 at 4:45 pm

Great post, thank you! I have both RA and Fibro and learning to pace is my most difficult task, along with asking for help! Nice to hear your process.

Reply

Tami September 11, 2012 at 6:57 pm

Thanks, Tabatha! If you haven’t read it, my post Honoring Your Body: Practical Advice, Part 1 has some great tips for pacing, and Part 2 has some advice on how to gracefully (and effectively) ask for help when you need it.

Reply

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