Tuesday, September 14, 2010

30 Things - Invisible Illness Week

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illnesses I live with are: Fibromyalgia, CFIDS, Myofascial Pain Syndrome, Celiac Disease, Bipolar II, and potential Narcolepsy, high-functioning Asperger's, and an unknown autoimmune condition.
2. I was diagnosed with it in the year: Ranges from roughly 2000 to 2009.
3. But I had symptoms since: birth and then new illnesses in 1998.
4. The biggest adjustment I’ve had to make is: changing my life to be about coping and staying alive instead of fulfilling my huge dreams.
5. Most people assume: That I am lazy or crazy.
6. The hardest part about mornings are: Trying to get my body to want to move again.
7. My favorite medical TV show is: House, I guess? Not a huge fan of medical TV shows.
8. A gadget I couldn’t live without is: My laptop - my life takes place more on the Internet now than in the real world.
9. The hardest part about nights are: The vast amounts of pain and sometimes inability to sleep because of it.
10. Each day I take __ pills & vitamins. (No comments, please) 35-40 (depending on pain level of the day).
11. Regarding alternative treatments I: Incorporate many of them into my treatment cycle, but do not dismiss Western medicine.
12. If I had to choose between an invisible illness or visible I would choose: I would rather choose healthy, but I think a visible illness would be easier to deal with when it comes to outside society.
13. Regarding working and career: I've never held down a job for more than 2 months in my entire life.  My illnesses stole that capability from me.  
14. People would be surprised to know: That I am very scared.
15. The hardest thing to accept about my new reality has been: The effects that the illnesses have had on my relationships with other people.
16. Something I never thought I could do with my illness that I did was: Get a Bachelor of Arts in Communication Studies and a college diploma as an Executive Office Assistant (as school is more flexible with absences than work).
17. The commercials about my illness: Make me sick to my stomach with how inaccurately the illnesses are portrayed.
18. Something I really miss doing since I was diagnosed is: Crafting and painting! I still get to do a little, but not nearly as much as I could!
19. It was really hard to have to give up: Driving. That loss of freedom hurts.
20. A new hobby I have taken up since my diagnosis is: Writing this blog!
21. If I could have one day of feeling normal again I would: Ride a horse along the beach with the ones I love!
22. My illness has taught me:  To pace myself.  To take care of myself as best I can.  
23. Want to know a secret? One thing people say that gets under my skin is: "I wish I could have your illness so I could lay around on a couch and not be responsible".  That one kills me.  Or, "If I were you, I would have killed myself already." Also not a hit.
24. But I love it when people: Go out of their way to try and help me with the simple things that can throw my day off - cooking, dishes, filling pill cases.
25. My favorite motto, scripture, quote that gets me through tough times is: I shut my eyes and all the world drops dead; I lift my eyes and all is born again ~ Sylvia Plath
26. When someone is diagnosed I’d like to tell them: Hold on - you are in for a bumpy ride! (Plus, some useful tips in general...).
27. Something that has surprised me about living with an illness is: It never goes away, and if it does, it isn't for long. I always waited for that day. That day has never come. I still wait for that day.
28. The nicest thing someone did for me when I wasn’t feeling well was: Get groceries for me, cook a meal for me, play with my hair when I'm sobbing...
29. I’m involved with Invisible Illness Week because: AWARENESS is key to giving our lives more meaning.  When we are belittled for what eats us up our entire lives, we feel heartbroken, betrayed, and a little crazy.
30. The fact that you read this list makes me feel: A little more noticed in the world :) and thankful someone cared to take the time to read it!
xoxo,
Annie

7 comments:

Lee Lee said...

I can relate to pretty much everything you said and I have to say that I am scared too. Every night I go to bed and seriously wonder if i will still be here tomorrow .... it's a yucky way to live.

Anonymous said...

Awesome post! I too can relate to pretty much everything you said. You're an inspiration to us! And even though you say ur scared, I think ur really brave =D

~ad

Lynda Halliger-Otvos said...

I did read it and agree with each of the items on your list. MY CFIDS is in remission and I am able to work at home part time which makes me feel much better about myself. It was really hard when all I could do was sleep and complain about how I felt. Moving to CA in 2000 and getting health insurance has improved my quality of life immensely.

Anonymous said...

I'm glad I've gotten to know you through Twitter. I think you're a very sweet,kind & understanding young woman.You may feel lousy,but I can see your compassion. I truly hope and pray that you will get stronger each day.I'm proud to know you!,FrancieML

Toni said...

That's a great list, Annie. I can relate to everything you listed. I often wish that people could SEE that I'm sick. My local newspaper did a story on me because of the release of my book. It was a nice story but the reporter said: "The doctors can't find anything wrong with her." (which isn't even true). I thought "great, now everyone around town will think I'm not really sick."

But then I realized that I've been putting up with this for nine years and that I just have to let people think what they're going to think. It's hard enough tending to my own thoughts with kindness to waste my time trying to control what others think!

Anyway, thanks for the list. It clearly got MY juices going!

Love,
Toni

Lynda said...

Hi Annie - I just ran into your website tonight from a websearch on Celiac Disease I was doing. I have had CD for 27 years and due to a fatal accident (too close for me) for the person who hit me, however 10 of us survived, and I was the worst injured, I have some similar diagnoses, however more on the brain side, that I battle with from 11 years ago. As I am unable to work and drive like you, due to the mental issues, I volunteer from home for the Canadian Celiac Association. I see that you are in Saint John, from one of your comments - did you know that there is a Chapter in Saint John that you could approach about volunteering for them? I do not know much about that Chapter or their President compared to other Chapters however I do know that they do not have a website - perhaps you could offer to set one up for them? Here is their Chapter Information: http://www.celiac.ca/events_saintjohn.php It really helped me to focus and feel positive once I got over my injuries, and for me, helping people with their CD questions and my years of experience when it was not recognized and really was a "hidden" condition at that time really was beneficial. I am currently the Vancouver Chapter Past President but currently filling in for the President, the Treasurer, I do the e-mail support and write the newsletter 6 times a year. I also do the Social Media, which won us 2nd place in a contest this year and a $5 donation, and through a friend who manages the website, I deal with the content which is currently out of date!
However I learned something today from you and thanks for sharing! It is Invisible Chronic Illness Awareness Week! I have not heard of it in the 35+ years I have had Chronic Illnesses however really great to know and I will pass it on!

Kathleen said...

Who in the name of all that is Holy, would say comment number 23??? Just lay around all day and not be responsible? That is one of the stupidest things I have ever heard in my life.
You should ask them: "So, you would like to lie on the couch and feel like acid is running through your viens, while being electricuted periodically and some loss of control of your appendages and know that there is nothing that will really get rid of that feeling. Well bully for you!"
As for number 27....that day will come....we have to believe that. It gives us our fight, our power and our control over some aspect of our lives.
You are brave, resourceful and a survivor. Giving you a cyber hug!