Invisible Illness Awareness Week (My 30)

Who knew there was such a thing? Happy Invisible Illness Awareness Week y’all! And I didn’t even get you a gift!

In all seriousness though, taking part is a great way to shatter misconceptions and to shed some light on what people experience…what I experience.

I’ve never been one to do the stupid fill in the blank lists on Facebook and then say “your turn. However, I decided to break my rule and go with this one to help shed awareness regarding daily struggles of people with issues unseen.

The 30-Things-You-May-Not-Know…has been blowing up newsfeeds and such this week and I read many things that sounded like my own voice. I’m not crazy, and I’m not an island! Perhaps  someone will stumble across my 30 and find comfort.

1. The illness I live with is: A complex central nervous system disorder (immense head pain, seizure, trigeminal neuralgia, CSF pressure issues, vision loss…)

2. I was diagnosed with it in the year: Early 2012, after having meningitis in 2011.
3. I had symptoms since: February 2012, when I began to lose my eyesight it got real quickly.

4. The biggest adjustment I’ve had to make is: Not working and making an impact in my community.

5. Most people assume: My surgeries at John Hopkins “fixed me.” This is something that is a real hot spot for me. Something so complex has no easy fix!

6. The hardest part about mornings are: Learning whether or not the day is either going to be manageable, or excruciating.

7. My favorite medical TV show is: Grey’s Anatomy (since episode 1). Though I don’t understand how this has anything to do with my illness.

8. A gadget I couldn’t live without is: My iPad. I can’t look at a computer screen without a multitude of issues.

9. The hardest part about nights are: Waking up in extreme head pain and never going back to sleep. Insomnia stinks!

10. Each day I take _ pills & vitamins. (No comments, please):I do not use many meds. I have only one RX I cannot function without, and the rest are vitamins and minerals. Pain meds are a very last resort that I rarely use (and they usually don’t touch my pain so why pollute my body.) I have other PRN meds for nausea etc… I’ve tried a variety of meds, but they just do not work.

11. Regarding alternative treatments I: Have tried to have several different alternative approaches (acupuncture, massage), but nobody will treat me because of my disorder. They believe it will open Pandora’s box…isn’t THAT fantastic? Hypnosis is the only thing I do on a regular basis. And, yes, I’ve seen some benefit.

12. If I had to choose between an invisible illness or visible I would choose: This is the most stupid question! Why would I want either?

13. Regarding working and career: I am frequently pissed off that I am disabled. I loved working and enjoyed making a difference. Now I often feel aimless. It’s hard to come to the realization – that part of my life is over.

14. People would be surprised to know: I lie a lot about how I am. I am in pain all of the time! I mean ALL OF THE TIME. I function well at a 4 and you would never know it. Sometimes I reach 7 or 8 and still manage to hold it together. My issues have also created a level of anxiety I never had before.


15. The hardest thing to accept about my new reality has been: Missing out on life…I hate being in my home so much.

16. Something I never thought I could do with my illness that I did was: Function LOL! (If you had told me 10 years ago that I would be dealing with all of this I would have said “kill me now.”).

17. The commercials about my illness: What?! There are no commercials because it is a rare disease.

18. Something I really miss doing since I was diagnosed is: Going out! Being at a party among friends.

19. It was really hard to have to give up: Being the social person I was before I got sick. (I also miss the occasional glass of red wine!)

20. A new hobby I have taken up since my diagnosis is: Journaling and writing. Someone gave me a fantastic insomnia journal that I adore! 

21. If I could have one day of feeling normal again I would: Do everything I could possibly do in that one day!

22. My illness has taught me: That I have some of the most amazing people in my life. It’s when things are most difficult that you learn the meaning of true friendship. On the flip side – it has also taught me what people are full of crap! I have NO patience for trivial BS (And I’ve been immensely surprised by the ones who put unneeded stress on me and my family).

23. Want to know a secret? One thing people say that gets under my skin is: (The same as everyone else with an invisible illness) “You don’t look sick at all.”

24. But I love it when people: I had a friend say to me “I know you feel so terrible, but you need to know you look beautiful today.” Such acknowledgement meant the world to me! She deserves a medal!!!
25. My favorite motto, scripture, quote that gets me through tough times is:   ~Elizabeth Edwards
26. When someone is diagnosed I’d like to tell them: I’d like to change diagnosed to struggling…I would like for people to know there ARE individuals who understand! Pain and illness drive you insane some days! I lost a friend to suicide and we often talked about struggles we both endured daily. She was brilliant and amazing, and I wish she had shared her struggle more with me. I wish I had known she felt so helpless.
27. Something that has surprised me about living with an illness is: The strength I truly have within me. I’ve always been stubborn, but pushing through takes it to an all new level. I always thought I was on the weaker side, and I learned I was incredibly wrong about myself.
28. The nicest thing someone did for me when I wasn’t feeling well was: There is just no way to mention one! I am fortunate beyond belief.
29. I’m involved with Invisible Illness Week because: People just do not understand what they cannot see. People make assumptions that just are not fair.
30. The fact that you read this list makes me feel: Like I am understood just a little more…

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Filed under Brain, Inspirations, Life, Sally

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