Tuesday, September 15, 2009

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Chronic Pancreatitis, CFS, Endometriosis, IBS, Raynouds Syndrome, Arthritis, Adrenal Insufficiency, Blethoritis, GERD, etc. . .
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: Youth
4. The biggest adjustment I’ve had to make is: Not being able to work
5. Most people assume: I am healthy and happy
6. The hardest part about mornings are: The pain, stiffness and fatigue
7. My favorite medical TV show is: Hawthorne
8. A gadget I couldn’t live without is: My Computer
9. The hardest part about nights are: The pain and the loneliness
10. Each day I take 14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Don't have a lot of experience with them
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I have none due to illness and this is extremely hard, not only financially, but on my self image as well.
14. People would be surprised to know: How much I hurt and how isolated I feel.
15. The hardest thing to accept about my new reality has been: That I can't be the person I wish I could be, or even have been in the past.
16. Something I never thought I could do with my illness that I did was: Take care of my mother
17. The commercials about my illness: Don't represent what it is really like to live with them
18. Something I really miss doing since I was diagnosed is: Being spontaneous, being able to do what I want, when I want without having to weigh the costs.
19. It was really hard to have to give up: My privacy and freedom
20. A new hobby I have taken up since my diagnosis is: Scrapbooking and writing
21. If I could have one day of feeling normal again I would: Do all the things I miss doing and treasure the memory of what it felt like to be healthy.
22. My illness has taught me: To be patient, compassionate and empathetic to others
23. Want to know a secret? One thing people say that gets under my skin is: "But you're too young to be so sick" or "But you look too good to be so ill"
24. But I love it when people: Really listen and make it clear that they love me for who I am now
25. My favorite motto, scripture, quote that gets me through tough times is: "Be kind, for everyone you meet is fighting a great battle" -Philo of Alexandria
26. When someone is diagnosed I’d like to tell them: Have hope, stay positive and get as much support from others as you can.
27. Something that has surprised me about living with an illness is: How much it affects every aspect of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Ask ME what I needed and then did it, or just did something wonderful without being asked.
29. I’m involved with Invisible Illness Week because: It is important to raise awareness and to advocate for all of us.
30. The fact that you read this list makes me feel: nervous, but hopeful that you will understand me a little better for having taken the time to listen to what I have to say.

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 www.invisibleillness.com


Kerry said...

Maureen, By the end of the list my eyes had welled up with tears. Your honesty moves me as you speak for all of us and share that which isn't easy to...

The inability to work is also the hardest part for me, the loss of independence. I miss just being out there working, playing, socializing, and taking part in life with others...as you said Maureen, to be able to do the above spontaneously. How I miss that.

As usual my friend, you inspire. Hugs, Kerry

FIGHTER said...

i truely understand number 9....besides the pain, that is what i fight the most..thank you for sharing with us....:)

Anonymous said...

Hey no need to be nervous. You speak for all of us -- any one of us with an 'invisible illness' would write exactly as you've done. I agree wholeheartedly with you -- esp about the daily pain. Thanks for courageously sharing.

Tiglizzyclone said...

Thank you for sharing more about yourself.

Anonymous said...

Maureen...I have something that has plauged me for a year.

I seem to be improving.

I read what you are going through and let me tell you, you have my sympathy, prayers and understanding.

I pray that you will find some MD who can UNDERSTAND...

I have two books, "The Way Doctor's Think", and "How To Survive Your Doctor's Care", that have been very helpful.

May the Lord Bless you and Keep you!


Mark from MN

Tammy said...

I get all 30 of your things. I suffer from most of the same things as you do. I recently also had to stop working (still having a hard time with that one). My "quote" or saying that keeps me going is... God doesn't give you more than you can handle...(this is my part now) however he may bring you to your knees but he always lifts you up in the knick of time.