"Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.
Invisible illnesses are easy for 'healthy' people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.
Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a 'meme,' 30 Things About My Invisible Illness You May Not Know. So, here's my meme..."
1. The illness I live with is: Familial Hemiplegic and Intractable Chronic Migraine disease
2. I was diagnosed with it in the year: 1980-1981
3. But I had symptoms since: I treated for my first headache at age 16 with a B12 shot but I remember complaining about my brain hurting as a little kid.
4. The biggest adjustment I’ve had to make is: the need to change careers. Other lifestyle changes have been necessary. No Chinese restaurants, avoid free-glutamates including MSG, high fructose corn syrup, artificial sweeteners.
5. Most people assume: That Migraines are "just headaches" that can be "cured" with a little Excedrin Migraine or Tylenol, and I should be able to just "get over it" because it "isn't that big a deal."
6. The hardest part about mornings is: when I would wake up with a migraine or prodrome symptoms because at that point there's nothing I can do except grit down and bare it, even if that still means having to go to work. If I did make it to work, I was usually home by 10 am. Haven't had this issue so much since working 3rd shift.
7. My favorite medical TV show is: generally anything on PBS. Otherwise I just love House.
8. A gadget I couldn’t live without is: A heating pad. Not that it's a real gadget.
9. The hardest part about nights is: Working. It's very difficult adjusting to 3rd shift. Otherwise, I do have a stage IV sleep disorder and do not go into deep sleep.
10. Each day I take: 11 prescriptions not including my inhalers, two scrips are PRNs so I don't take them every day.
11. Regarding alternative treatments: I believe in them wholeheartedly. I use homeopathy, relaxation, ice, heat.
12. If I had to choose between an invisible illness or visible I would choose: I'm not sure, most people just don't want to deal with others' issues. Visible is a lot easier to get disability for.
13. Regarding working and career: I am fortunate to have had skills to fall back on when I had to change careers in January. If I hadn't had those, I don't know where I would be.
14. People would be surprised to know: That my migraines caused brain damage.
15. The hardest thing to accept about my new reality has been: Limitations, even 9 months on my new job, it's difficult having given up a career I enjoyed. Finding the right medication combination to treat and manage the disease.
16. Something I never thought I could do with my illness that I did was: Start a blog, connect with and meet so many other amazing migraineurs.
17. The commercials about my illness: Certainly minimize the disease and lead to the misinformation that is out there. Some of the prescription commercials make it seem that the drug is for everyone. Not all of us can take these meds. In particular, I cannot take any of the Triptans due to the vascular risk.
18. Something I really miss doing since I was diagnosed is: Hmmm, it's been so long ago, but within the past 18 months being a social worker and going for Chinese
19. It was really hard to have to give up: My career, though the place I worked was easy to give up.
20.A new hobby I have taken up since my diagnosis is: beading
21. If I could have one day of feeling normal again I would: Normal? Is there any such thing? If you ask anybody, I don't think anyone truly feels what they would identify as "normal."
22. My illness has taught me: Perseverance, and I am not alone.
23.Want to know a secret? My disease truly is genetic. I have two lousy genes, and two mutations on the same gene. Most likely from my mother's mother's side. That's where the stroke history is from.
24. But I love it when: I connect other people with migraines who really understand and validate all the things that used to make me feel "crazy" and alone. AND when I find research that confirms some of the things we have all been saying just from the experience.
25. My favorite motto, scripture, quote that gets me through tough times is: "Is there any remover of difficulties, save God, say praised be God, He is God, all are His servants and all abide by His bidding." The Bab
26. When someone is diagnosed I’d like to tell them: You are not alone. Let's go on the journey together.
27. Something that has surprised me about living with an illness is: How often people can be insensitive about Migraines, especially with noise. It is very difficult to have to listen to someone else's music when the head is pounding; and they believe it is a right to have it blasting in the workplace.
28. The nicest thing someone did for me when I wasn’t feeling well was: My kitties are awesome, they always know when to snuggle when I don't feel well.
29. I’m involved with Invisible Illness Week because: Invisible Illnesses are very, very common. Everyone knows someone with an invisible illness, and it's important to bring the special issues related to living with these illnesses to light.
30. The fact that you read this list makes me feel: Honored.
You can 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
23.Want to know a secret? My disease truly is genetic. I have two lousy genes, and two mutations on the same gene. Most likely from my mother's mother's side. That's where the stroke history is from.
24. But I love it when: I connect other people with migraines who really understand and validate all the things that used to make me feel "crazy" and alone. AND when I find research that confirms some of the things we have all been saying just from the experience.
25. My favorite motto, scripture, quote that gets me through tough times is: "Is there any remover of difficulties, save God, say praised be God, He is God, all are His servants and all abide by His bidding." The Bab
26. When someone is diagnosed I’d like to tell them: You are not alone. Let's go on the journey together.
27. Something that has surprised me about living with an illness is: How often people can be insensitive about Migraines, especially with noise. It is very difficult to have to listen to someone else's music when the head is pounding; and they believe it is a right to have it blasting in the workplace.
28. The nicest thing someone did for me when I wasn’t feeling well was: My kitties are awesome, they always know when to snuggle when I don't feel well.
29. I’m involved with Invisible Illness Week because: Invisible Illnesses are very, very common. Everyone knows someone with an invisible illness, and it's important to bring the special issues related to living with these illnesses to light.
30. The fact that you read this list makes me feel: Honored.
You can 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
Thanks Teri!
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