Tuesday, September 8, 2009

30 Things About My Invisible Illness You May Not Know

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here it goes:

1. The illness I live with is: Migraine disease
2. I was diagnosed with it in the year: 2002? It seems like a life time ago.
3. But I had symptoms since: I was about 13 - I'm 32 now.
4. The biggest adjustment I’ve had to make is: Not trying to push too hard because I am not super woman and it will hurt tomorrow if I push too hard today.
5. Most people assume: that Migraines are "just headaches."
6. The hardest part about mornings is: motivating myself to get moving since the pain is already there most days.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my computer
9. The hardest part about nights is: insomnia and nausea
10. Each day I take *_9_* pills & vitamins. - that's what I have to take, if I don't feel well that number climbs quickly
11. Regarding alternative treatments I: have only tried aromatherapy
12. If I had to choose between an invisible illness or visible I would choose: visible, or one with a cure would be even better!
13. Regarding working and career: it's a challenge every day.
14. People would be surprised to know: I have some sort of pain every day.
15. The hardest thing to accept about my new reality has been: not being able to do the things I used to love like having a drink with friends, staying up late, going to a theme park and riding rides.
16. Something I never thought I could do with my illness that I did was: meet so many great friends who share my disease.
17. The commercials about my illness: annoying, stupid, and really don't help explain the disease for what it is. It's very sugar coated.
18. Something I really miss doing since I was diagnosed is: have a few drinks and stay up late
19. It was really hard to have to give up: my former life.
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: probably be too scared to do anything since I would regret it the next day!
22. My illness has taught me: to be more compassionate and just because someone may look fine, that does not mean they are not suffering with something.
23. Want to know a secret? One thing people say that gets under my skin is: "We gotta get you a good doctor" or "oh you still have Migraines?"
24. But I love it when people: are willing to learn about the disease instead of judge me unfairly
25. My favorite motto, scripture, quote that gets me through tough times is: "The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." - Ben Okri
26. When someone is diagnosed I’d like to tell them: learn all you can about this disease
27. Something that has surprised me about living with an illness is: how far we have to go
28. The nicest thing someone did for me when I wasn’t feeling well was: everything! My husband bends over backwards when I am sick. He knows if I can't do it, I must feel really crappy.
29. I’m involved with Invisible Illness Week because: We need to raise awareness and get the right information out there.
30. The fact that you read this list makes me feel: a little less alone


chrissy said...

nice post...i saw this a few days ago and not sure how to get the link to do this or did you just type all it in yourself....:)

Migraine Chick said...

Great Post! Thank you so much for sharing. I think I may try to do this!

yummystuff said...

Thank you for writing this post. I connected with so many things that you wrote. When I read #30, the tears started to fall. I have been on Topomax and things have been going great but then my bloody migraines have come back and it is sooooo hard trying to work and manage pain. It feels like no one understands and it sometimes feels very easy just to give up. Thank you, thank you, thank you

Eileen said...

I think this disease is a very lonely one. It's both a blessing and a curse I guess when others understand because they go through it too, but it stinks because that means they know your pain, how bad it is, and how you feel because they suffer in the same way you do. I don't wish that on anyone!

Feel free to cut/paste and fill this out on your own for Invisible Illness week! :-) I got it thanks to Teri Robert who posted it on My Migraine Connection!

MigrainePuppet said...

Good job with your list. I can relate to so many of the items you wrote. It is amazing how much Migraines can change your life. Take care.

Sue said...

Great list. Many of mine were similar. I've gone private for a number of reasons (this is to all headache bloggers). If anyone wants an invite, just email me at

suecan at gmail dot com

Eileen said...

Hey Sue! Great to "see" you! I'm gonna hit up your email in case you don't see this.

Sherrie said...

I was born with migraines and been to every dr. under the sun. Took all of their useless meds some of which I was allergic to. Just found out that I have graves disease but I haven't had it all of my life like the migraines so I am sure there is no connection and no hope of getting rid of them. At this point i really just want to die to escape the damn migraines because the quality of my life sucks! And Im so sick of the dr.s that say, sorry I really dont know what to do with you because none of my magic pills are working for you!

Eileen said...

Sherrie -

Migraine is a genetic neurological disorder to which, currently, there is no cure. I'm sorry to hear that you have yet to find a preventive that works for you and now also have a new diagnosis of Graves as well.

Have you been to a Migraine specialist? I found that with the neuro's I was seeing, they didn't know quite as much as my specialist does. I finally found a doctor that won't give up on me! She is always 2 steps ahead of whatever preventive I'm on and knows exactly what to try next if the current one fails.

I wish you the best of luck! It took me a very long time to find a good doctor. There is hope, I promise you!

Anonymous said...

I know this is an older post, but I just found your blog through a google search. I also can relate to so many of those. Most people just do not understand. I am usually a very energetic motivated person and migraines really interrupt my life. Getting them daily really wears on me. I have been to a neurologist, back and forth to my PCP, and recently went to an acupuncturist. I also recently started therapy with hopes that will help (re: stress, anxiety). I am planning on seeing a different neurologist an hour away to see if they can help at all because so far, I have had no help. Inderal used to help but unfortunately does not anymore. I do take maxalt, but needing it daily and often more than once a day really scares me sometimes! When will it end!

Just wanted to say thanks. It's nice to know I am not alone.