Wednesday, September 9, 2009

In Anticipation of Invisible Illness Week

September 14-20 2009

Thanks to the many bloggers who are participating I am now aware of Invisible Chronic Illness Week. For more information on what an Invisible Illness is, and how many people are affected by these afflictions, go to

I've decided to fill out the following list, as I have learned a lot reading the lists of others. Hope mine makes sense as The Headache has been really intrusive this evening. I'm thinking it may be the weather...

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: hemicrania continua ( I have many more, but I'm tring to simplify this a bit)
2. I was diagnosed with it in the year: Hemicrania Continua 2008
3. But I had symptoms since: hemicrania continua 2007 (although I had "common" migraines from 1976 - 2004)
4. The biggest adjustment I’ve had to make is: knowing that there is a limit to the pain I can tolerate and trying to adjust my life and medication to control the pain and still feel productive.
5. Most people assume: that I am as healthy as a short chubby pony, maybe a tempermental Shetland Pony that children won't ride because it bites and tries to scrape them off on low hanging limbs...I don't think I qualify for healthy as a horse....
6. The hardest part about mornings are: trying to function with little or no sleep and falling asleep at odd moments when I am trying to get dressed.
7. My favorite medical TV show is: Dr. G Medical Examiner
8. A gadget I couldn’t live without is: a potato peeler - otherwise I carve away all the potato with the skin...
9. The hardest part about nights are: pain at 2AM to 3AM, and not sleeping.
10. Each day I take 8 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried a few, were not any more effective than any other treatment.
12. If I had to choose between an invisible illness or visible I would choose: the invisible illness. Having been friends with persons with visible illnesses I don't know if I would have their bravery to deal with people in general and their misconceptions. With an invisible illness I can be perceived as healthy when walking through crowds or meeting new people. Visible illnesses don't give you that option.
13. Regarding working and career: I am glad I have such wonderful bosses because it has been a struggle to work at all these last two years.
14. People would be surprised to know: at one time I was a fine art major in college and love art history and am a pretty good draftswoman..
15. The hardest thing to accept about my new reality has been: my fear of extreme pain. I'm not normally a fearful person, but there are realms of pain I don't want to go back to ever.
16. Something I never thought I could do with my illness that I did was: get into a national study for occipital stimulators for headache pain. Woo Hoo!
17. The commercials about my illness: don't exist. There aren't too many of us out here yet.
18. Something I really miss doing since I was diagnosed is: swimming - exercising is a huge problem for me as it exacerbates the hemicrania continua pain, even with my occipital stimulator. Sigh...
19. It was really hard to have to give up: my feeling of invulnerability
20. A new hobby I have taken up since my diagnosis is: blogging - it's a great distraction.
21. If I could have one day of feeling normal again I would: take a flight to a Carribean island and bask in the sun and play in the surf.
22. My illness has taught me: I have limits.
23. Want to know a secret? One thing people say that gets under my skin is: you look as bad as I feel. All you can think is - I look bad??? or are they feeling really good? Sooo confusing.
24. But I love it when people: give me information/advice about headaches. You never know when you will learn something new! I found out that mosquitos don't like it when you take too much niacin - a fantastic summertime tip that didn't help the headache, but was interesting.
25. My favorite motto, scripture, quote that gets me through tough times is: The 23rd Psalm:
The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.
26. When someone is diagnosed I’d like to tell them: keep trying specialists until you find one that actually communicates with you and has some sense.
27. Something that has surprised me about living with an illness is: how quickly it takes over your life.
28. The nicest thing someone did for me when I wasn’t feeling well was: sit for hours in the emergency room and driving me home in the wee hours of the morning.
29. I’m involved with Invisible Illness Week because: its a fantastic education effort to bring awareness of invisible illnesses to the forefront.
30. The fact that you read this list makes me feel: glad I decided to participate.


  1. I hate peeling potatoes. I usually just put the whole dang thing in a pot and pull the skin off after they cool a bit. The visible or invisible question was hard one for me to answer too. It is nice sometimes being able to perceive ourselves as healthy, but when times get incredibly painful it is difficult to explain why no one can see our illness. I hope your migraine has eased up for you some.

  2. Now I never thought of peeling the potato AFTER cooking! Ya learn something new everyday!!

    I agree that people are much more understanding about visible disabilities, but have seen the other side where they are also much more discriminatory.

    I think the problem with "invisible" illness is that we don't have that instant validation. People close to us that have seen what we deal with day to day hopefully understand. People don't try to "fix" persons with visible disabilities, but they try to help us "fix" the invisible ones. I take this in the spirit of "they are trying to make me better" rather than "they don't know what they are talking about", [even when they don't know what they are talking about.] It's better for my internal well-being, as I come from a very large family with lots of opinions.:)

    I have added your blog Sweet Migraines, and your latest featured blog Pink Pearl Girl's Migraine World to my blog list. I have enjoyed reading both!

  3. What a lovely and poignant post. Thank you. You say a lot for those of us with invisible illness. I connected most closely with the fear of pain. I'm not normally a fearful kind of person, but I know what kind of terror the worst pain can bring. I'm afraid of that.

    Limits: One of the hardest lessons I've had to learn over four years of pain.

  4. Sue: I don't know what I would do if this had dragged on for four years! I applaud you for your strength in being able to walk through the valley and come out on the other side. I personally think faith and spirituality helped me at the darkest times. I don't know how people without belief systems are able to maintain balance in bad times without it, its that vital to me.

    I swear that constant pain actually lowered my pain threshold. I don't know if my body just gets overwhelmed with pain and can't handle a drop more, or I am just so fearful of going to the "bad place" where extreme pain dwells that I overreact. Probably a combination of both! Biofeedback helps the pain fear reaction some.

    Even with cancer, I didn't accept limits. I pushed myself and my body beyond what I probably should have looking back. Now I have limits but its still hard to accept. Plus I'm 50 so aging is starting to kick in with its limitations also. big sigh....

  5. Just an FYI - trying the precooked potato peeling trick tomorrow. Freedom from peelers, yeah!!!

  6. Hi Winny Ninny...I love your list. Very informative. Thanks for stopping over to my blog. I absolutely LOVE your analogy of illness being like rain showers. And how we need umbrellas. AWESOME!!! Yours was the best comment ever.
    Please come back and visit again soon...I know I will be back to visit you soon.

  7. Denise - Hoping for sunnier days ahead. I will be keeping up your progress! loved your blog!!