Getting to know My Migraine Life


After a month of advocating for Migraine and headaches, I thought I’d let you get to know ME a bit better.  Please feel free to answer these questions and tell me a bit about yourself also.  Here’s some things you may not know about me.

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic migraine
2. I was not diagnosed until years after my first migraine.
3.  I had symptoms since: probably the day I was born or soon there after. I had my first migraine when I was 5 that I remember.
4. The biggest adjustment I’ve had to make is: being prepared for it to hit at any moment, anywhere.
5. Most people assume: that it’s just a headache
6. The hardest part about mornings are: waking up. I have a headache everyday when I wake up and the direction of my pain level dictates my day
7. My favorite medical TV show is: Gray’s Anatomy
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: going to sleep. I love to sleep to escape the pain but my eyes flutter open from the pain and it takes me a while to fall asleep.  By the end of the day my migraines escalate to levels that require peace and quiet
10. Each day I take the least amount of pills that I can & vitamins in order to survive.
11. Regarding alternative treatments I: do as many as possible to hopefully cut back on meds. They help minimally, but I do whatever I can to help myself naturally.
12. If I had to choose between an invisible illness or visible I would choose: no disease. It is actually helpful at times that I can hide my pain but also leaves me vulnerable to judgment. I don’t know how it feels to have a visible disease and I’m sure that just as many problems arise with it.
13. Regarding working and career: I used to be a special education teacher and the stress triggered me into missing many days and was criticized for having my own special needs. I now stay at home with my children which allows me flexibility but no breaks. I literally live, eat, sleep and breathe my children and even if I’m crazy sick, they are still my responsibility.
14. People would be surprised to know: that I am chronically ill. I hide it really well (the best that I can) so my children and friends don’t worry about me.
15. The hardest thing to accept about my new reality has been: it’s not a new reality. I’ve lived with it my entire life but have never gotten used to it. It has changed as often as I have since I was 5 and it is constantly a trial and error to give me some kind of normalcy.
16. Something I never thought I could do with my illness that I did was: go to college. I say this in hindsight because I was naïve in thinking that I would be fine when I left from my family and doctors. I have read how so many people have had to drop out of school and how it affects their education. From hearing others stories I am most grateful that I was able to be educated and enjoy college life at the level that I did.
17. The commercials about my illness: make me roll my eyes and give sarcastic comments. See my thoughts in Excedrin migraine commercial 
18. Something I really miss doing since I was diagnosed is: being carefree. I don’t remember a time that I didn’t have migraines and I live each day thinking and dealing with them. To not have to think about my chronic condition would allow me to live much differently.
19. It was really hard to have to give up: drinking, foods, nights out, events etc. I miss out on a lot and even more if I’m not cautious
20. A new hobby I have taken up since my diagnosis is: blogging. I find it meaningful to help others and in return learn about myself and sort through what I’m dealing with.
21. If I could have one day of feeling normal again I would: (see) https://mymigrainelife.wordpress.com/2014/06/02/what-would-you-do-if-your-dream-of-a-pain-and-a-completely-symptom-free-life-came-true/
22. My illness has taught me: that I’m stronger than I think and that giving up is not an option
23. Want to know a secret? One thing people say that gets under my skin is: it can’t be that bad.
24. But I love it when people: say they enjoy my blog. I feel like I’m making a difference with positive feedback.
25. My favorite motto, scripture, quote that gets me through tough times is: live like  you are dying.  I never know when I’ll be locked in my cold dark room and I do not take low pain days for granted.
26. When someone is diagnosed I’d like to tell them: I’m sorry. It’s a journey.
27. Something that has surprised me about living with an illness is: how many aspects of my life that it effects.
28. The nicest thing someone did for me when I wasn’t feeling well was: a lot. I am surrounded by love and have an army of people who fight for me. I feel so sorry for people who are unsupported and alone with this already isolating disease.  Love won’t cure me, but it has healed me.
29. I’m involved with Invisible Illness Week because: bringing awareness is important.
30. The fact that you read this list makes me feel: special. There is a lot to read and do and the fact that you read about me is special. Thank you for reading.

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“What would you do if your dream of a pain and a completely symptom free life, came true?”

Life without pain? First thing I’d do is travel. I’d jump on a plane, not care what foods I packed and get off in a tropical location. It wouldn’t matter that the barometric pressure or weather was dramatically different. The sun wouldn’t bother me, I may even walk around without my sunglasses. If I was dehydrated or stressed from the flight, that’s ok, I’d drink a glass of water, take a deep breath and not need to pop pills and go lay down. I’d drink and I’d drink a lot. Red wine? Why not? I have never been able to drink it, so bring me a bottle. And while you are at it, bring me all of my trigger foods. I would lay out in the sun and not have sensitivity to the heat and read all day because the words wouldn’t be blurred in pain. Maybe I’d go shopping. I would have more money since I wouldn’t be spending it at the doctor’s office and I would have a ton of room in my suitcase since it wouldn’t be filled with medications and other various therapies. After my long day of eating and drinking I would go dancing. The louder the music, the better. Strobe lights would be fun if they didn’t make me feel like I was going to pass out. No worries, I would be pain free, drunk, and unrestricted. I would stay up all night. Sleep deprivation wouldn’t trigger a migraine, so why not? The next morning I’d wake up and not assess my pain level. I wouldn’t have plan A (what I’d like to do today) and plan B (what I’m missing today). I’d drink coffee because I like it, not because it helps speed up my meds. I’d call everyone I know and speak really loudly. My brain wouldn’t be unpredictable and foggy. I wouldn’t feel like I was yelling inside my head. Then I’d head to a CAVS event. Maybe even a really exciting game where the jumbo-tron is alive and the crowd noise is being pumped up. While I was there I’d drink a draft beer. I haven’t been able to drink those in years, and it would accompany my energetic sporting event well. On the way home the street lights wouldn’t flash like auras in my eyes. I’d be tired but the excitement of the day wouldn’t send me into a tail spin.
Living pain and symptom free would be completely foreign for me. I’d go a bit crazy for a short time, I think. I’d have to rebel a little bit after being restricted for so many years. That is, if not drinking enough water and enjoying the sun and a basketball is rebellious. But once I calmed down, I’d enjoy just the little things. A 3D movie or anything super high definition I have never seen. I can’t work out at the intensity or duration that I would like to. Even concerts have become more and more difficult for me to attend (even in the grass). Small things I guess. But it’s the small things that I appreciate now, with the pain, that makes me live my life to the fullest. I appreciate each pain free or less moments with my family. I am able to sit quietly and breathe in my kid’s sweetness because I don’t know when I’m going to be rushed away with a migraine attack. Do I stress about the small things, yes of course, I’m human. But when my health is unpredictable I live cherishing the moments. If I was pain free would I still live like that? I wonder….but I may never know.