Way back in 2009 I completed the Invisible Illness Week “30 Things” meme, but clearly things have changed a ton in my life since then. Considering that our theme for the September 2014 Headache Disorders & Migraine Blog Carnival is a request to discuss living with an invisible illness and/or participate in the 30 Things challenge, it seems like the perfect time to complete it again.
30 Things About My Invisible Illness(es) You May Not Know
1. The illness[es] I live with is[are]: Chronic Migraine, depression, occipital neuralgia, type 2 diabetes, polycystic ovary syndrome, infertility, irritable bowel syndrome. I’ll be focusing on Migraine since it relates to the Headache Disorders & Migraine Blog Carnival.
2. I was diagnosed with it in the year: Around 1983.
3. But I had symptoms since: I can remember.
4. The biggest adjustment I’ve had to make is: Not being able to work in my chosen profession or contribute to my family’s finances.
5. Most people assume: That Migraine is just a headache. In reality, there are many other symptoms associated with Migraine and many of them are just as if not more debilitating than the pain. Also, it is possible to experience a Migraine attack without pain.
6. The hardest part about mornings are: Getting up to care for my newborn daughter with a raging Migraine and not enough sleep.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: My iPhone.
9. The hardest part about nights are: Desperately needing sleep and not being able to get it because my pain and other symptoms get in the way.
10. Each day I take: 21 pills & vitamins. I also wear a patch and use nasal sprays and injections to treat my conditions. (No comments, please.)
11. Regarding alternative treatments I: Have tried most of them and continue to utilize some of them, including aromatherapy and mindfulness.
12. If I had to choose between an invisible illness or visible I would choose: I can’t say because I’ve only lived with invisible illnesses. There are good and bad things about either kind of illness. Neither of us have it easy.
13. Regarding working and career: I miss it. I loved my career and job. But I feel lucky to have a new kind of career as a part-time writer and advocate and now a stay at home mom.
14. People would be surprised to know: How happy I really am despite all the pain, debilitating symptoms and loss.
15. The hardest thing to accept about my new reality has been: The need to rely on other people so heavily.
16. Something I never thought I could do with my illness that I did was: Become a mom.
17. The commercials about my illness: Oversimplify a complicated condition and make it seem much easier to treat than it actually is.
18. Something I really miss doing since I was diagnosed is: Do things without planning or worrying about how I’ll feel. Even simple, every day things.
19. It was really hard to have to give up: My career.
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: Do something fun and active with my family.
22. My illness has taught me: That sometimes working really hard and doing your best isn’t enough to prevent you from being dealt devastating setbacks in your life.
23. Want to know a secret? One thing people say that gets under my skin is: When other patients refuse to take responsibility for working hand-in-hand with their doctors and helping themselves.
24. But I love it when people: Make an effort to stay in touch even when I’m not feeling well enough to reciprocate.
25. My favorite motto, scripture, quote that gets me through tough times is: “We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.” – Maya Angelou
26. When someone is diagnosed I’d like to tell them: To find a great Headache Disorders specialist, reach out for support and read lots of good information about the condition. I’ve worked hard to put together quality information based on reliable sources here at Somebody Heal Me. I also recommend Migraine.com, Health Central and ACHE.
27. Something that has surprised me about living with an illness is: How helpful it is to be part of a community of supportive people online.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take care of my daughter.
29. I’m involved with Invisible Illness Week because: I want to help spread awareness about what it’s really like to live with a debilitating condition that no one can see.
30. The fact that you read this list makes me feel: Grateful.
Learn more about Invisible Illness Awareness Week, September 8-14, 2014, here: Invisible Illness Awareness Week 2014.
Content by Diana E. Lee.
DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.