“Imagine smiling after a slap in the face. Then think of doing it twenty-four hours a day.”
Markus Zusak

I had to think very long and hard, before writing this blog post, because my subject is not all sweetness and light. I decided to be quite honest about, what I have been going through for some time now, but also let you know, that without hope I wouldn’t be able to, continue my journey with migraine.

During my last hospitalization, I discovered that my baseline pain level, had changed from a two, up to a four. Despite three hospital stays, for DHE infusion treatments, along with other medications, I have been in Intractable Migraine status, for about 85% of this year. This also means, that I have spent that same amount of time in my migraine cave. Not really much of a life is it? There have been times, that I wanted to scream, cry, shake my fists towards the heavens and ask, why me, what did I ever do, to deserve this? The answer is simply nothing, I just drew the wrong genetic straw. Feeling sorry for myself, gets me nowhere, neither does, always putting on a mask and smiling like an insane person, to the point your facial muscles hurt. It’s okay to let down your guard, we are not super humans, but everyday folks, living with chronic illness, some of us more than one.

Pain such as this, is isolating, I wasn’t able to attend my families Thanksgiving at my brother and sister-in-laws home this year. This is the first time ever, I have missed going, it was heartbreaking and made me feel very guilty at the same time. I am beyond thankful that my husband is so supportive, he as never complained one time, about turning into a househusband. Me on the other hand, feel horribly guilty about it, but when I say something, Rick gets very upset with me, he always says “It’s not your fault that you’re in pain, you have nothing to be guilty about. These are my chores, just as much as yours, so stop it!” Rick is retired, so that makes a big difference and he loves to cook and grill, I call him the grillmaster! I get really tickled watching him look up recipes on Pinterest. My sister, Malissa has been very supportive, she texts me almost everyday or every other, to check on me. We’re the closest in age and have always been close, even though she lives about an hour and half away. A lot of you know her and have seen pictures of her fabulous creativity and business, I’m very proud of her. I also have the support of my wonderful migraine sisters and the migraine community. Such a blessing!

It is very hard to explain, what happens to the body when a migraine attack strikes, to someone who has never experienced it. It’s so much more than the headache that comes with it, that is just one symptom, most of the time I have the one-sided, searing, stabbing, throbbing pain. Another days it feels like my head is in a vice, squeezing harder and harder. My scalp gets very tender, allodynia, neck pain is part of my head pain, sensitivity to light, big time, my pupils stay dilated to between 7-8mm at all times and do not constrict much at all with light. Sensitivity to sounds and certain smells, IBS symptoms, nausea and vomiting, mood swings, aphasia, memory loss, brain fog, severe fatigue, loss of appetite, or food cravings, dizziness, weakness. This list can go on, depending on what type of migraine a person has. At times some of these symptoms are more debilitating than, the head pain is. I have fibromyalgia as well, which flares along with a migraine attack, leaving me feeling like, I’ve gone a round with The Incredible Hulk!

One of the newest and most frightening things I’ve been dealing with is nightmares. Nightmares in which, I am awaken from literally fighting, kicking and punching, crying and screaming, make it stop. I think that I spend so much of my energy, trying to push down the pain, to be brave and not whine. That when I’m asleep, my subconscious brings it to the surface, whether the pain is physical or mental, no matter how long you stuff it down. It’s going to show its face somehow and make you deal with it. I’ve awoken crying from pain before, but nowhere near this kind of level. I didn’t like this at all, as I said it was very frightening and I knew that I needed to do something about it. My husband knew about it of course. I talked with two people who I trusted, and explained what had happened, they both gave me encouragement and hope. I have not had a nightmare since then, that is why I believe so strongly in hope. With hope nothing is impossible!

I’ve also decided to make a few small changes in my life, while I still believe wholeheartedly in advocating for migraine disease, for myself and others. That doesn’t mean, migraine should be my sole focus. I am an avid reader, have been since the 3rd grade, if someone tried to steal my purse or my Kindle Fire, I would give them my purse! I’ve also discovered some new Facebook pages, that basically are just for fun, when you find yourself in pain all the time, fun is just the ticket. There are some days that my pain levels are too high, for the computer or TV. Those days I can usually read, either with the light level lowered or the blue shade engaged, on my Kindle. I know most of us living with migraine, have little tips and tricks, we use to make life easier. Please feel free to share some, I’d love to read them! Oh dear, I almost forgot, I made one other change, just a tiny one. I had some purple streaks added to my hair! lol
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“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.”
Dalai Lama XIV

Live with hope,
Roni