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underneath my invisibility cloak lurks…

This is a reader-submitted story.

1. My diagnosis is: Migraine with aura
2. My migraine frequency is: Varies. Depends on what triggers are “triggering”. Like weather or hormones.
3. I was diagnosed in: 1990’s.
4: My comorbid conditions include: Lyme disease
5: I take 0 medications as a preventive and 2 medications as abortive for acute attacks. I do take daily vitamins with focus on the B vitamins and also daily prescription
antacid and prescription digestive enzymes, plus bio-ident hormone.
6. My first migraine attack was: I can’t recall, but I know it was in my teens, though perhaps earlier as all the stomach aches/vomiting I had as a child are now thought to have been “abdominal migraines” because Dr’s feel that as an adult I still am getting this type along with and/or followed by a “traditional” migraine.
7. My most disabling migraine symptoms are: Definitely the pain. Although the myriad of other proteome symptoms get can be just as disabling. Often, I will feel the worst in the prodome/aura stage– just funky, not myself, very weak, ill, fuzzy headed, “on edge”, often with horrible stabbing stomach pain and then once the head pain arrives, I will feel more like myself, centered, stronger with easing off stomach pain. That’s not to say the headache doesn’t effect me, it does in all the classic migraine ways–needing a dark, quiet room, often vomiting, “done for the day”, take my meds and SLEEP, but yet, somehow I am already feeling better.
8. My strangest migraine symptoms are: How they manifest primarily on the left side of my body. I swear I can draw a line down the center and feel perfectly clear, eye able to focus, no fuzzy headed feeling, no Pain anywhere (head, “stomach”/torso), no numbness/tingling on right side and have all of that on the left!
9. My biggest migraine triggers are: weather, hormones, fluorescent lighting, bright sunlight IF I don’t have sunglasses on, gluten, msg and other artificial ingredients.
10: I know a migraine attack is coming on when: I start to feel fatigued/fuzzy around my left eye and also yawning a lot.
11. The most frustrating part about having a migraine is: Having to deal with the symptoms/feeling bad.
12. During a migraine attack, I worry most about: Letting others down/not getting things done/missing out on something I really wanted to do.
13: When I think about migraine between attacks, I think: Really, I don’t think about it. I don’t dwell on it. I just live the day before me.
14: When I tell someone I have migraine, the response usually is: Sympathetic.
15: When someone tells me they have migraine, I think: How sorry I am for them.
16: When I see commercials for migraine treatments, I think: Wow! That’s a lot of scary side effects. (I have avoided taking Triptans or ergots so far. And yes, I DO HAVE MIGRAINES).
17: My best coping tools are: Avoiding triggers as much as possible. Getting enough sleep, eating regular meals/snacks, staying hydrated, avoiding stress. Epsom salt baths, resting in a dark, cool room, ice pack, Vicks salve rubbed into sinus areas of face, taking abortive med’s. PHENERGAN. Also a foot rub and or neck massage can do wonders to help me relax and rest through it. And if all else fails a trip to the ER. Luckily that doesn’t happen too often.
18: I find comfort in: Knowing it’s a migraine. The support of my husband/family. Being able to take my med’s, a bath, rest. Knowing it’s not the end of the world…I’ve been through this many times before, “piece of cake” haha. I have really come to a place of acceptance about this and the symptoms I deal with due to Lyme disease. Is it a struggle? Heck yes! Do I like it? Are you kidding me? No, it sucks!! But, am I going to let it ruin my life? Not if I can help it. ..and so, every day I am determined to keep on keeping on. Sometimes, I falter. I moan and weep and wail and gnash my teeth and ask, “Why me?” But, after I finish my pity party, I pick myself up, dust myself off, shake my fist at it–and decide again to keep on and make the best life I can.
19: I get angry when people say: Anything that belittles what I deal with.
20: I like it when people say: How I am an inspiration/encouragement to them.
21: Something kind someone can do for me during an attack: Tell me to go rest. Take care of whatever I am trying to still do despite being in prodome or full-time migraine stage. Yes, I am that stubborn…I will often try to push through or finish a taks(s) so that I feel like I can stop and rest even though I am only going to end up making myself worse.
22: The best thing a doctor has ever said to me about migraine is: Validation.
23: The hardest thing to accept about having migraine is: Plans won’t always be kept. But then, even people without health issues don’t have this promise either. It’s all in how you view your circumstances. Nothing is cast in stone. We never have total control. Only God does. I can let go and just live.
24: Migraine (and Lyme) has taught me: To be even more flexible than I innately am. To do the best I can under the circumstances/symptoms of any given day and be happy with whatever I am able to do. To not beat myself up, this is nothing I’ve chosen. But, I can choose how I react to it.
25: The quotation, motto, mantra, scripture that gets me through an attack is: “Seek out the happiness within Life’s crappiness”, “Cie la vie and a handbasket!”, “Put one foot in front of the other”, “You are not alone”, ” God will take care of you”, and James 1:2-3.
26: If I could go back to the early days of my diagnosis, I would tell myself: “You’re going to have some really hard, scary symptoms, but you’re going to be ok.”
27: The people who support me most are: My immediate family and my church family.
28: The thing I wish people understood about migraine (And Lyme disease) is: That just because I “look good” or am out and about– doesn’t mean I feel fine. I wish they understood the Herculean effort it often takes for me to be able to present a “pretty appearance” and to be out at the grocery or other event or how “doing things” usually means I pay for it with days of recovery time. How this is something that impacts my life CONSTANTLY.
29: Invisible Illness awareness (which of course includes migraine) is important because the more we educate others to understand these diseases that can not always be seen on the surface, the more support can be given to those that suffer.
30: One more thing I’d like to say about life with Migraine (and Lyme) is: You can still live a good life. It may not be the life you hoped for, but it can still be good and fulfilling. You just have to learn how to accept the change and challenges, adapt your daily activities based on your day’s symptoms, and adjust your perspective of how life “should be”…in fact, throw out the should’s! They only serve to make you feel “less than”. You are not less than! You are more than capable to handle this and you are blessed with strength and grace to do so. You are more than “good enough” XOX.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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