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1. The illness I live with is: Bipolar Disorder, Narcolepsy, Fibromyalgia
2. I was diagnosed with it in the year: 1992, 2005, 2006
3. But I had symptoms since: Forever, Forever, 2003
4. The biggest adjustment I’ve had to make is: Everything. My whole life has had to be rescheduled around my illnesses. My job, my relationships, my hobbies, everything.
5. Most people assume: Nothing is wrong with me. Outwardly I don't look sick, they see someone who holds down a full-time job, raises a family, and still has a life. They don't see all the things I sacrifice to have what I do.
6. The hardest part about mornings are: Getting out of bed. I am always exhausted, get little to no sleep, and hurt everywhere. Once I am out of bed doing my hair is often a chore. I have a torn rotator cuff and it makes blow drying and straightening something I have to work at.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my blackberry
9. The hardest part about nights are: The long endless hours where I can't sleep and all I do is lay and stare at a wall, or rub at a sore spot and cry while trying not to wake up my boyfriend.
10. Each day I take 11-15 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: do Yoga and Dance, exercise like crazy, have tried and wish to try again acupuncture, take herbal and nutrition supplements for my bipolar disorder.
12. If I had to choose between an invisible illness or visible I would choose: How can you pick one? Any illness has its ups and downs. I don't want to be ill at all. I feel lucky for not being any worse than I am.
13. Regarding working and career: I work full time in a field I have no interest in because that is what suits the schedule I have to keep. I miss tons of work and thankfully have an understanding company who is just happy that all my work is done and done well. I often make myself ill trying to work full time and then have to sacrifice time with my family to rest or recover.
14. People would be surprised to know: How hurt I really get by casual dismissive comments. I never let it show on the outside but I have been really wounded by the way some people have behaved towards me and my disabilities.
15. The hardest thing to accept about my new reality has been: the sacrifices. The things I have to give up or parcel out in increments. Having to try to explain to my kid why I can't do something with them breaks my heart.
16. Something I never thought I could do with my illness that I did was: raise a child. I've been a nanny in the past but I still wasn't sure I would ever be able to be a mom. But I have been very lucky and have a wonderful step-son.
17. The commercials about my illness: are kinda silly. Especially the bipolar or depression ones. Everything seems to take place in a rainy dreary atmosphere with moping women and sad looking family members. It gets a little soap-opery. The fibro commercials seem pretty spot on sometimes. I've never seen a narcolepsy commercial.
18. Something I really miss doing since I was diagnosed is: surfing. Since the fibro and rotator cuff tear I have not been able to get back on a board yet though I am still hopeful for the future. My balance has been really affected and I can't currently paddle with my shoulder busted up.
19. It was really hard to have to give up: having a wacky schedule. I used to come and go whenever I wanted to, travel when I wanted to, now everything has to be so regimented and planned. It gets a little boring.
20. A new hobby I have taken up since my diagnosis is: running. I was never a runner before but now I love my treadmill and use it as my primary source of cardio. I never thought I would like running.
21. If I could have one day of feeling normal again I would: go to the ocean and paddle out on a surf board.
22. My illness has taught me: to appreciate the little things. To let go of some things and not get so worked up. To really cherish the wonderful people in my life.
23. Want to know a secret? One thing people say that gets under my skin is: You take too many pills. Like I have a choice. Like being in pain and out of my mind, and asleep all the time is a viable option for every day living.
24. But I love it when people: compliment my hard work and acknowledge how much harder I may have had to work for something an able-bodied person wouldn't have. It's nice to know people notice my efforts and appreciate what I do.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. I kinda think that's just silly. As if some magical phrase will make me feel better.
26. When someone is diagnosed I’d like to tell them: don't let it be the end of your world. There is so much more out there and so many ways to get around or overcome obstacles. And don't push people away. Keep loved ones close cause when you need someone to lean on, they'll be there.
27. Something that has surprised me about living with an illness is: how many more people are just like me. It is gratifying to know I am not alone and so many more have gone before me and succeeded.
28. The nicest thing someone did for me when I wasn’t feeling well was: I can't begin to narrow this down to one thing. My family and friends have made this all bearable. The nicest thing they've done is be themselves, be there for me, help me every day and not abandon me during the worst times.
29. I’m involved with Invisible Illness Week because: I feel more people need to be aware of the people every day around them struggling with a disability. Even the ones they can't obviously see. You never know who might need your help or understanding.
30. The fact that you read this list makes me feel: appreciated and heard.
Tuesday, August 10, 2010
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