1. The illnesses I live with are: Migraine, Fibromyalgia/CFS, Multiple Chemical Sensitivity, Vertigo and Obstructive Sleep Apnea
2. I was diagnosed with: Migraine around 1991, FM in 2001, MCS around 2003, OSA in 2009
3. But I had symptoms since: Migraines since childhood - worse at puberty, and transformed into Chronic Migraine around 1991
4. The biggest adjustment I’ve had to make is: loss of a social life, and eliminating so many foods from my diet
5. Most people assume: I'm fine because they can't see my illnesses
6. The hardest part about mornings are: waking up with an icepick migraine or major stiffness in my neck, shoulders, arms and hands
7. My favorite medical TV show is: "Nurse Jackie" at the moment. It was "ER" and "St Elsewhere" in the early 80s.
8. A gadget I couldn’t live without is: I can live without them, but I would miss my computer. The Internet gives me an opportunity to connect with others who know exactly what I'm going through. And it's given me the ability to write about my experiences.
9. The hardest part about nights are: how good/active I feel because it's dark, cool, and the air quality is best. Unfortunately, it's when the rest of the world, including my husband, is asleep.
10. Each day I take about 10 different supplements, and a Migraine abortive when needed.
11. Regarding alternative treatments: I'm glad they work for others, but all they've done for me is drain my wallet.
12. If I had to choose between an invisible illness or visible I would choose: to not have to choose
13. Regarding working and career: I'm a homemaker who gets paid in kisses, and I really enjoy my bonuses
14. People would be surprised to know: how well I can sing, but I wouldn't dare let them find out
15. The hardest thing to accept about my new reality is: not being able to be as active as used to be - exertion is a huge trigger
16. Something I never thought I could do with my illness that I did was: learn an online video game and actually be good at it
17. The commercials about my illness: focus too much on pushing drugs versus prevention
18. Something I really miss doing since I was diagnosed is: being physically active
19. It was really hard to have to give up: my old life, so many of my favorite foods, a social life, and my paycheck/independence
20. A new hobby I have taken up since my diagnosis is: playing the where's-the-hidden-MSG game, writing, researching, guitar
21. If I could have one day of feeling normal again I would: enjoy a tennis match under the warm sun
22. My illness has taught me: how to slow down, and how strong I am
23. One thing people say that gets under my skin is: "What do you do all day?" and "I barely put any perfume on," as if it's the smell that's causing an acute Migraine attack instead of the chemicals in the perfume. The word "cure" is thrown around too much.
24. But I love it when people: come to me for advice, and don't take my lack of a social life personally
25. My favorite motto, scripture, quote that gets me through tough times is: "Emancipate yourselves from mental slavery. None but ourselves can free our minds." -Bob Marley's Redemption Song
26. When someone is diagnosed I like to tell them: what you're experiencing is real, and you're not alone
27. Something that has surprised me about living with an illness is: I can live below my means and be happy (gasp!)
28. The nicest thing someone did for me when I wasn’t feeling well was: my husband performs loving acts of kindness every day
29. I’m involved with Invisible Illness Week because: too many people suffer from invisible illness in silence; I'm just doing my part to spread awareness
30. The fact that you read this list makes me feel: visible
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 invisibleillness.com
13 comments:
Great post...mind if I use the questions in my blog?
Jasmine,
I'm going to respond to a few of these... :)
Re: #3... Do you think your pediatrician could have helped you in the long-term by diagnosing you with migraines in your childhood? (Just curious).
Re: #5... This is such a big one. It's amazing how people assume that a person who looks healthy is... It never occurs to the vast majority of people that it could be any other way.
Re: #6... Starting out the day behind the 8-ball with various symptoms isn't fun. It's just not a nice way to kick off the day.
Re: #8... Yes, computers are such a wonderful tool for connecting with fellow patients to give/receive support.
Re: #9... I always feel much better at night. Like you, I find that this often leaves me up by myself awake.
Re: #11... That's unfortunate that alternative treatments haven't helped you.
Re: #14... Well, for goodness' sakes... Why would you not want people to hear you sing if you sing well? You know I'm going to bug you for a video now, right? :)
Re: #22... This is huge and something Dorian and I just exchanged comments about on my blog. Excellent point! One of the benefits of chronic illness... perspective.
Re: #23... UGH. People who say, "what do you do all day?" have no idea how hurtful, insulting, and offensive they are. In my experience, it usually goes, "what do you DO all day?"... UGH. Also, the "I barely put any perfume on" comment irks me because it takes very little for me to react with MCS and this comment just drives me mad.
Re: #25... Great quote.
Re: #26... What you tell people is awesome.
Re: #30... Jasmine, you are visible!!
:)
Jeanne
Eimi, those questions are actually from invisibleillness.com to promote Invisible Illness Awareness Week Sept 14th - 20th. I'm sure Lisa won't mind, especially if you mention the cause and her website.
I love to know more about you. I’m surprised you sing too!
Big hug Jasmine!
Jeanne, I love all your questions/comments.
#3 My first unofficial migraine diagnosis: when I was in elementary school I would have trouble seeing the chalk board and I would tell my mom my head hurt behind my eyes. My mom took me to an eye doc, but my vision was fine. The doctor asked my mom if she suffered from Migraines. She told him she did along with her mom, so he went on to explain how Migraine is hereditary. I can't recall seeing anyone for Migraine treatment or prevention until I landed a job with benefits in the late 90s.
It's hard to say if an official diagnosis by a pediatrician would have made a difference. When I was diagnosed with a heart murmur my mom didn't listen to doctors who told her that I shouldn't play sports. She didn't want me to feel limited. Maybe my childhood would have been worse if I had a Migraine diagnosis.
#14 I lost a lot of confidence through the years because of stacking invisible illnesses and the isolation that comes along with them. I used to be outgoing, and easily made friends of all ages. I danced as a child and took singing lessons. I sang throughout high school and also a little in college, as well as nine months of acting classes outside of school.
Thanks Eva, I enjoyed reading your list and learning more about you too. Big hugs!
Great post! I'm a Nurse Jackie fan, too!
Thanks Chick :)
I really enjoyed learning more about you Jasmine. I agree that our invisible illnesses can make us so much stronger.
thank you so very much for adding me to your blog list....:)
#30 is so true!!
Awesome list...I love that everyone is spreading the word this week.
Thanks for all the kudos everyone. It's been great to see so many spreading awareness both online and with their family, friends and co-workers!
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