30 Things About My Invisible Illness You May Not Know

This week is National Invisible Chronic Illness Awareness Week, September 10-16, 2012.

Invisible Illness Week 2012Even when we have known a person forever there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia and TMJ Disorder

2. I was diagnosed with it in the year: 2012 for Fibromyalgia and 1998 for TMD.  I’d lived with non-stop chronic pain through my entire body for several years before I finally got the diagnosis of fibromyalgia.

3. But I had symptoms since:  1998 for TMD.  2004 for chronic pain/fibromyalgia

4. The biggest adjustment I’ve had to make is: I’ve made so many changes to myself and my life it’s hard to pick just one.  I think the biggest one would have to be to change my overachieving nature into being someone who is okay with doing as best as I can given the limits of my pain and energy.  It’s hard and I have to keep working at it to keep this outlook, but it’s a completely different outlook on life than I’ve had for the last 26 years of my life.

5. Most people assume: I’m healthy but tired and somewhat cranky.

6. The hardest part about mornings are: Leaving the comfort of my bed and heating pad to get up, get ready, and go to work.

7. My favorite medical TV show is: Body of Proof I guess.  I don’t watch a lot of real life medical shows.  I read a lot about my health and illness instead.  (My favorite TV show period is NCIS!)

8. A gadget I couldn’t live without is: my back massager.

9. The hardest part about nights are: Staying asleep for a whole 8 hours.  That rarely happens.

10. Each day I take 27 pills & vitamins.

11. Regarding alternative treatments I: couldn’t live without them.  I regularly incorporate cranial massage therapy, acupuncture, massage, homeopathy, relaxation therapy, EMDR therapy, and oestopathic treatments into my approach to handling my disease.

12. If I had to choose between an invisible illness or visible I would choose: A visible illness.  People can see it so they believe it exists.  I hate the looks of doubt I get of people who don’t believe fibromyalgia is real.  I hate having to justify why I can’t do something due to my health.  I hate that I look completely healthy when I’m in constant pain that no one can see.

13. Regarding working and career: I’ve had to cut back the number of hours I work.  I can only work 30 hour weeks now, so 8am-2:30pm every day.  I can’t do 40 hour weeks.  It’s just too much for me.  I don’t really have “career goals” any  more.  The only goals I have are for my health and my marriage.

14. People would be surprised to know: that I struggle with depression.  I am usually an upbeat, positive and optimist person.  I have to stay positive and optimist in the face of chronic pain or I would give up and throw in the towel.  Sometimes I have to fake my upbeat, postive persona until the real thing kicks in.

15. The hardest thing to accept about my new reality has been: just how many facets of my life I have to work to change and control to be able to get a handle on my fibromyalgia and learn to control the pain.

16. Something I never thought I could do with my illness that I did was: Go back to work after an 11-week medical leave of absense.  I was convinced working would be impossible for me ever again.  But I came back and I work 6 hour days now.

17. The commercials about my illness: are stupid, but they’re often the only way people have heard about fibromyalgia.  “Oh, I’ve seen those drug commercials about that.”

18. Something I really miss doing since I was diagnosed is: being able to do something, anything spontaneously.  Everything takes lots of planning with fibromyalgia.  Nothing is done easily, quickly, or without pain.

19. It was really hard to have to give up: Caffeine.  I was addicted to soda, tea and coffee.  I can’t handle caffeine at all now, it makes me sick.  I can’t drink sodas of any kind.  Even ginger ale upsets my stomach.

20. A new hobby I have taken up since my diagnosis is: Coloring.  I use crayons and color in children’s coloring books.  While I color, the pain receeds.  It’s amazing and I love it.

21. If I could have one day of feeling normal again I would: grab my husband and get on a plane to somewhere just because we could.  Go have an amazing day where money is no consideration.  I would want it to be the best day of our lives.  Something we could remember and treasure for the rest of our lives.  (Does it tell you something of how much fibromyalgia has changed my life if I tell you that I teared up while writing the answer to this one question?)

22. My illness has taught me: to ask for help when I need it.  I was never good at that before and I still find it hard now.

23. Want to know a secret? One thing people say that gets under my skin is: Oh, I hurt too. You can’t hurt that bad. Or, your pain can’t be any worse than my pain.  People talk about a bum knee or an occasional headache (headache not migraine, there’s a big difference) as if it’s the same as the pain I feel every day.  It’s not.

24. But I love it when people: That sounds awful. I don’t know how you manage. I’m so sorry.  Let me know if there’s anything I can do to help.

25. My favorite motto, scripture, quote that gets me through tough times is: I love the serenity prayer, but the thing I say most often to myself now is “You’ll learn to hang if you hang long enough.”  My grandfather always said that.  I didn’t know how true it was until I developed chronic pain/fibromyalgia.

26. When someone is diagnosed I’d like to tell them: This isn’t a death sentence.  You’re life will change, but there are good things that come out of this.  You appreciate the little things more than you ever did before.  The good days become amazing days that you don’t take for granted.  You appreciate things a lot more than you did before.  It’ll be okay, I promise.

27. Something that has surprised me about living with an illness is: just how tough and stubborn I am.  If you’d asked me as a freshman in college if I thought I could live through this I would’ve told you no.  But I keep on going.  I keep fighting.  I never give up. I’m too stubborn to give into my disease.  I keep fighting to make the best of the cards I have been dealt in life.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me a gluten free dinner to eat for a few days.  It was such a relief to not have to spend the energy on cooking something and it was comfort food which is what I needed.

29. I’m involved with Invisible Illness Week because: I have an invisble illness and I fight it every day.  Many people don’t know that I have fibromyalgia or that fibromyalgia even exists.  I’m trying to promote awareness on it with my blog and Facebook page.

30. The fact that you read this list makes me feel: loved and supported.  I don’t know what I’d do without my family, friends, and online support community.  They get me through the hard times.

To list your 30 things, click here.

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2 thoughts on “30 Things About My Invisible Illness You May Not Know

  1. Someone very close to me has fibro and I’ve seen it transform her life to the point of *almost* destroying it. She was able to take back some sort of control, but she’ll never be the same. So when I hear people say they don’t believe it’s real, I tell them that I’ve seen what it can do and I have no doubt that it’s real. Thank you for posting about Invisible Illness week, I hadn’t heard of it before.

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