"Suffering the Slings and Arrows of Outrageous Fortune"

30 Things….

In honor of Invisible Illness Awareness Week, I have asked my daughter to do another guest post. She has answered 30 questions about EDS to bring awareness about her medical condition and I am posting it here:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers Danlos Syndrome.
2. I was diagnosed with it in the year: 2011, but that was a year after we knew what it was.
3. But I had symptoms since: Very young.
4. The biggest adjustment I’ve had to make is: Going to different measures to protect my joints.
5. Most people assume: Well, when I’m in my wheelchair, people assume I’m either paralyzed or mentally retarded.
6. The hardest part about mornings are: Waking up still fatigued.
7. My favorite medical TV show is: None. Because they’re all full of crap.
8. A gadget I couldn’t live without is: I would say my wheelchair?
9. The hardest part about nights are: Trying to fall asleep with your adrenals still going.
10. Each day I take 34 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Don’t like them because they often involve needles.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. Because you can actually pretend to be fine if you want.
13. Regarding working and career: N/A
14. People would be surprised to know: I’m actually fulling capable of walking and an intelligent conversation?
15. The hardest thing to accept about my new reality has been: So many things.
16. Something I never thought I could do with my illness that I did was: Make a difference.
17. The commercials about my illness: Are quite unhelpful considering they DON’T EXIST.
18. Something I really miss doing since I was diagnosed is: Gymnastics.
19. It was really hard to have to give up: Sports.
20. A new hobby I have taken up since my diagnosis is: Music. Theatre. Singing. Compulsively Interneting.
21. If I could have one day of feeling normal again I would: Do gymnastics again.
22. My illness has taught me: To not judge a book by it’s cover. That you don’t have to be afraid of what you don’t know. Maturity. Responsibility. Honesty. Faith. Hope. Empathy.
23. Want to know a secret? One thing people say that gets under my skin is: “You’re too young to be in a wheelchair” “You’re too pretty to be sick” Yeah, well reality doesn’t FREAKING CARE.
24. But I love it when people: Help me with anything. So many people help me in so many ways.
25. My favorite motto, scripture, quote that gets me through tough times is: “The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quite you by his love; He will exult over you with loud singing” Zephaniah 3:17 (My favorite bible verse), “Strengthened with all might, according to His glorious power, unto all patience and long suffering with joyfulness” Collossians 1:11, and of course, “This too shall pass”. Can’t leave that one out.
26. When someone is diagnosed I’d like to tell them: That it will get easier.
27. Something that has surprised me about living with an illness is: That you can help people with your suffering.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listing those would take very, very long. So let’s leave it at so many things.
29. I’m involved with Invisible Illness Week because: My mother roped me into it.
30. The fact that you read this list makes me: ?

You can help raise awareness by clicking on the picture below and copying the 30 questions. Share your answers on Facebook or your blog to help the people around you understand your life more.

30things Our 30 Things Meme

Click to go to the website with the 30 Things Meme

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Comments on: "30 Things…." (5)

  1. Valerie Macri said:

    Thankyou so much for your blog on your daughters life with EDS your words on your life with this debilitating crap syndrome has profoundly touched me as I am a mum of 2 daughters 1 who has a milder form and the other who is 12 I would say has the majority of your daughters pain and the grief that this syndrome causes.Also after seeing numerous physicians with all there qualifications will never understand that this syndrome is not text book & as much as you try to follow all they say to do ,there little bodies will automatically shut down once again…very hard not to boom & bust …how much can u tell your child not to do this but do it like this …the ramifications of this syndrome pay a hefty toll on all the family as there is no more structure and u literally take day by day…to hear your story has helped so much for clarification & for letting our network of friends understand ….once again thankyou…

    • It is hard for them to just be kids without hurting themselves. My daughter still struggles with pacing herself but is definitely getting better at it the longer she has to deal with it.

      I am glad that our experiences have helped you in any way – it is such a lonely path but it is a little easier when you know you are not alone!

      Thanks for commenting!

      Beth

  2. Elaine said:

    loved the Bible verses!! Thank you! A fellow EDS’er Classical

    • Thanks! I have come to love the one from Zephaniah in particular after Em has shared it with me.

  3. […] 30 Things…. (slingsandarrowsofoutrageousfortune.wordpress.com) […]

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