Saturday, September 26, 2009

30 Things About My Invisible Illness You May Not Know

I completely missed the boat this year in blogging about Invisible Chronic Illness Awareness Week that took place September 14-20th. Here is my belated meme:
1. The illness I live with is: Migraine Disease & New Daily Persisitent Headache (I have others, but will not be referring to them in this meme.)

2. I was diagnosed with it in the year: 2006 (February) when I was 26.

3. But I had symptoms since: I have had headaches since I was in jr. high/high school. I was diagnosed with chronic sinus headaches as a teenager that continued into adulthood, but I now believe that many were probably Migraines. NDPH and Migraines became disabling in October 2005 when I was 25.

4. The biggest adjustment I've had to make is: make a complete lifestyle change and adapt to new limitations. I used to be a planner, now I go with the flow.

5. Most people assume: Migraines are just headaches. Also they assume if I look okay, I am not in pain.

6. The hardest part about mornings is: wondering what I will be able to do today or if I will have to spend most of the day in bed.

7. My favorite medical TV show is: none of them. I don't watch any.

8. A gadget I couldn't live without is: my computer.

9. The hardest part about nights are: difficulty falling asleep/staying asleep because of pain.

10. Each day I take 19 pills & vitamins. More depending on daily pain level. (No comments, please.)

11. Regarding alternative treatments I: do biofeedback, relaxation techniques, pilates, exercise, modified diet, and the list goes on.

12. If I had to choose between an invisible illness or visible I would chose: neither. 

13. Regarding working and career: I haven't worked since February 8, 2006. Although I keep up on continuing education for my speech language pathology certification. I volunteer when I am able.

14. People would be surprised to know: that I am in pain 24/7 and even when I look like I'm not, I am just pushing through.

15. The hardest thing to accept about my new reality has been: that I am so dependent on others.

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 inadequate and sometimes make me angry.

18. Somethings I really miss doing since I was diagnosed are: working as an SLP and spending time with family/friends whenever I wanted.

19. It was really hard to have to give up: serving others in the way I used to.

20. A new hobby I have taken up since my diagnosis is: knitting.

21. If I could have one day of feeling normal again I would: serve in some way that I'm not able to now: i.e. work with kids, meet the physical needs of someone who is chronically ill ect...

22. My illness has taught me: how to persevere.

23. What to know a secret? One thing people say that gets under my skin is: God has a reason for my illness.

24. But I love it when people: are compassionate and ask me questions about my illness.

25. My favorite motto, scripture, quote that gets me through tough times is: "But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint." Isaiah 40:31

26. When someone is diagnosed I'd like to tell them: Educate yourself. Be an active part of your health care team. See a headache/Migraine specialist.

27. Something that has surprised me about living with an illness is: that it takes patience and time to find a treatment regimen that will work and furthermore that there is no cure for Migraine disease yet.

28. The nicest thing someone did for me when I wasn't feeling well was: to sit in silence for hours at my bedside just 'being' with me. A close second is having someone carry me to and hold me up on the toilet.

29. I'm involved with Invisible Illness Week because: awareness and education are important to me.

30. The fact that you read this list makes me feel: loved.
Even though National Invisible Chronic Illness Awareness Week took place mid September, you can read more about it and the 5-day free virutal conference (which can be downloaded for free on iTunes) on its website.

1 comment:

  1. its never too late...thanks for sharing...its a great way to get to know people that follow you or you follow....:)