Sunday Thoughts on Living with Migraine: Time for Ourselves

HappySundayBlossomsHappy Sunday to my extended Migraine and Headache family, and happy Mother's Day to all the Moms!

Mother's Day brings to mind something that's important for all of us, whether we're mothers or not — Being sure to take time for ourselves. Regardless of everything else in our lives, we need time for ourselves to maintain our overall health, including our emotional and mental health. That's an undisputed fact that's become too often overlooked as our society has evolved and people become busier and busier.

As the internet and technology evolved, live has changed dramatically:

  • We used to wait for the newspaper or the noon and/or evening news broadcasts to catch up with the news.
  • We wrote letters or made phone calls to catch up with family members and friends.
  • We sat down once a month with our bank statements and bills to take care of financial matters.

No longer. The evolution occurred quickly: personal computers (desktop) ---> laptop computers ---> smart phones --->tablets. As each of these technologies were developed, news, communication, financial management, and more became more and more easily accessible. Mobile apps were developed for them with each app wanting to send us alerts and notices. Social media outlets, our banks, airlines, credit card companies all want to send us alerts for just about everything. My phone got to the point where I finally turned off the sounds for the alerts because there were so many of them coming so frequently that the phone was constantly dinging, beeping, chiming, or making some noise — even at night.

When I look at the statistics about how people access what I write, it's amazing. Here's last week's breakdown:

  • 59.54% mobile
  • 30.54% desktop
  • 9,92% tablet

All of this eats into the quiet time we might previously have had for ourselves. Have a family? A job? Volunteer activities? All of those can feed into the feeling that it's selfish to want time for ourselves. It's not selfish. It's necessary. If we're going to be and do our best for our family, jobs, and volunteer activities, we need time for ourselves to recharge so we can be at our best for everyone and everything in our lives.

BinxOfficeChair170503I've found that the best way to make sure I have some time for myself every day is to take time first thing in the morning. I fix my coffee and take it to my office. Once there, I take 30 minutes for prayer and meditation before starting my day. That helps me be more focused for the day and to get more accomplished. Lately, I've been taking some time most afternoons too because Binx, our new cat, is young, playful, and demanding of attention. Taking some time every afternoon to curl up and cuddle him has made for a good transition between my working hours and our evenings.

Whether you're a Mom or not, I hope you'll give some thought to how good it can be for us and everyone in our lives for us to have time for ourselves.

To all the Moms with and without Migraine...

MothersDay17

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 because a migraine is NOT "just a headache"
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Sunday Thoughts on Living with Migraine: Pre-Migraine Life

HappySundayBlossomsHappy Sunday to my extended Migraine and Headache Family. I hope the day and your heads are being as kind to you as possible.

I came across a sadly interesting conversation online last week. Someone asked if people remembered their pre-Migraine lives. The reason I say "sadly" is that so many of the people participating in the conversation are having problems with wanting their pre-Migraine lives back.

My Migraines began when I was so young that I really don't remember a time when Migraine wasn't part of my life. I do, however, remember before they became chronic the first time. Since then, I've gone back and forth between chronic and episodic Migraine because of preventive medications losing their effectiveness or having to reduce their dosage because of other health issues.

So, would I want my pre-chronic-Migraine life back? Certainly I would, but that's just not going to happen. There may be a cure for Migraine disease sometime in the future, but I don't think it will happen during my lifetime.

Why torture myself wishing for something I can't have? If I spent my time wishing to return to that part of my life, I wouldn't really live, would I? Here's the thing — It's one thing to wish for something we can attain. Wishes of that kind can be healthy aspirations that help us keep pushing forward. It's quite another thing to wish for something that can't happen. Wishes of that kind can lead to frustration and despair.

I mourned and grieved for my old life years ago. It's "normal" and healthy do grieve a part of life that we can't get back. What I want now is to get as much out of life as I can, to live it as fully and as well as I can.

MigraineNinja200Writing this post has brought me to realize, at least partially, why I recently started a new blog and site, www.Migraine.Ninja.

I'm drawing on my inner ninja to live the life I want. Migraine cost me my job and some relationships, but in the end, I gained a great deal as well. I have a job writing content about Migraine to help other people with Migraine. Many volunteer opportunities have come my way to advocate for myself and all of us with Migraine and other headache disorders. 

I've found a wonderful Migraine specialist to partner with. Right now, my Migraines are very well managed and back to episodic. There may come a time when my current treatment becomes less effective for me, but worrying about that now won't accomplish anything positive. It would just steal good days from me. So, I'll worry about that when it happens, but even then, I know my doctor and I will work together to find another effective treatment.

What about you? Are you stuck wishing to go back to your pre-Migraine life, or have you moved on to live your life as fully and well as you can?

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com


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Migraine and The Year of Conquering Negative Thinking

Worth-a-lookEarlier this week, I wrote about living with Migraine and being positive in 2017. Fortuitously, I came across a wonderful article from The New York Times this afternoon. Here's a brief excerpt:

Here’s a New Year’s challenge for the mind: Make this the year that you quiet all those negative thoughts swirling around your brain.

All humans have a tendency to be a bit more like Eeyore than Tigger, to ruminate more on bad experiences than positive ones. It’s an evolutionary adaptation that helps us avoid danger and react quickly in a crisis.

But constant negativity can also get in the way of happiness, add to our stress and worry level and ultimately damage our health. And some people are more prone to negative thinking than others...

“We were built to overlearn from negative experiences, but under learn from positive ones,” said Rick Hanson, a psychologist and senior fellow at the Greater Good Science Center at the University of California, Berkeley.

But with practice you can learn to disrupt and tame negative cycles.

Please take a few minutes to read the full article via www.nytimes.com

There is great power in how we think. Thinking positively or negatively can shape every area of our lives, making things better or worse.

Yes, we still need more research to fully understand Migraine; and, yes, we need better treatments. The good news is that there are four Migraine medications in clinical trials now that look very promising. These medications will bring an enormous positive change to the treatment of Migraine. In the meantime, we can help ourselves tremendously by remaining hopeful and positive.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Favorite Books for Folks with Migraine - Chronic Christmas

ChronicChristmasI must confess that I'm a bibliophile who voraciously reads books on many subjects including Migraine disease and other health issues. There are many reasons I love books. I read to learn, for inspiration, to relax and escape a bit, and more.

Recently, I read Chronic Christmas, written by Lene Andersen, a friend and colleague. I admit that I'd read anything Lene writes, BUT I wouldn't be telling you about this book if I didn't truly believe it to be a good one for your library. I can't describe it any better than the description that's on Amazon.com, so here's their description:

"Chronic Christmas is an Advent calendar full of self-care tips to help people with chronic illness savor the holiday season as never before. Author Lene Andersen has lived with rheumatoid arthritis for most of her life and is a health advocate and writer. Using her distinctive conversational style infused with warmth and humor, she has crafted a unique guide to an enjoyable Christmas season. Each Advent entry will enable the person with a chronic illness and their friends and family to connect in ways both effortless and fun. Chronic Christmas is guaranteed to help you relax and save your time and energy for what is truly important. The book also includes a few surprises along the way!"

One of my criteria for a great nonfiction book is that author does their research and truly knows their topic. Lene definitely knows her topic. She has lived with rheumatoid arthritis since she was four-years-old. RA hasn't stopped Lene. She's a very talented woman and an excellent and compassionate writer. To learn more about Lene, check out her story in Living with Rheumatoid Arthritis.

One of the best features of Chronic Christmas is that each day's entry also contains tips for helping someone with a chronic illness. That makes it not only a superlative book for those of us living with a chronic condition, but also for anyone who cares about us.

Chronic Christmas is available in both paperback and Kindle formats on Amazon. That's another great feature of the book — The Kindle format is so flexible that it can easily be gifted to anyone who likes to read books in electronic format because you do NOT need a Kindle to read it. With Amazon's free Kindle app it can be read on computers, laptops, and mobile devices of all kinds.

Review_stars_5Whether you're shopping for a gift, or looking for a book for yourself, Chronic Christmas is a perfect choice. Whether you're living with Migraine, RA, or another chronic condition, it fits your life. It's one of the best books I've read in quite some time, and I give it a full five stars!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine - Holiday Self-Care

WinterSundayHappy Sunday to my extended Migraine and Headache family! It's an unpleasant fact of life that some of us are bound to be dealing with Migraine attacks or headaches today, but I hope the day and your heads are being as kind to you as possible today.

Whatever holidays you may celebrate, you're probably deep into holiday decorating, shopping, baking, and other preparations. That's all well and good, but are we taking care of ourselves?

Consider this quote:

"Self-compassion is simply giving the same kindness to ourselves that we would give to others. "
             ~ Christopher Germer

And this one:

"... that’s the time of year when everybody stresses. Needlessly, I might add, because it’s really not the point of the holiday. You know, if you don’t have the perfect present or if the turkey’s a little overcooked... Your family wants you, and what good are you with a Migraine?"
             ~ Marcia Cross

We all wear many hats, play many roles. We're parents, grandparents, spouses, sisters, brothers, caregivers for our families, and more. As I look at that little list of roles, I realize that I left out a key role - that of being our own caretakers. What would you say is important about that role? Unless we pay attention to being our own caretakers, we're not going to be able to fulfill the other roles very well, and that can carry an enormous cost.

What do you remember most from the holidays when you were growing up? What I remember most is all the holidays when the entire family paid the price for my mother's insistence that everything be "perfect" despite her not feeling well enough to do things herself. These aren't the type of memories that I want to create for my loved ones, and I'm sure you feel the same way.

The bottom line is that if we're not practicing good self-care, it's far less likely that we can be part of creating the kind of holiday experiences and memories we want for the people we care about. It took me a while to recognize this. It was difficult, but one of the most important lessons I learned was to just let some things go. Things don't have to be perfect. Holidays should be about people, not things.

Here are some links to material that may be helpful to you leading up to and during the holidays:

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Doctors and Migratude

Fall-SundayHappy Sunday to my Migraine and Headache family! Many of us have had problems due to the weather over the last week. Hopefully, today will be better, and you'll have as pleasant a day as possible.

Over the past week, I've had a couple of conversations about what has been the most helpful element of my ongoing Migraine management efforts. This is a very common topic since all of us want to make progress in this area.

My answer to this question has always tended to be that the most important element of Migraine management is a good, knowledgeable doctor who will work with me as a treatment partner. A doctor who will outline all of the options, then make decisions WITH me, not FOR me. My Migraine specialist, Dr. David Watson, loves working this way. If you'd like to see more about how we work together, see Managing Migraine.

What's occurred to me after talking with people like Dr. Watson is that our attitude is as important as finding the right doctor to work with as a treatment partner. Dr. Watson and some other Migraine specialists I know have pointed out that the best of doctors can't manage our Migraines for us. It has to be a true partnership, and that includes our going into the partnership with an attitude that's primed for success, not failure.

LifeChallengesMigratudeWe all know that it can be easy to feel that we've "tried everything," easy to lose hope. But that presents us with multiple problems, not the least of which is that if we go to a new doctor thinking that there's nothing he or she can do to help us, or if we start a new medication thinking it's going to fail, we're sunk. That old self-fulfilling prophecy is going to rise up, bite us, and working with that new doctor or trying that new medication will fail because our minds are stronger than our bodies.

Now, let's be fair here. This applies to our doctors too. Little makes me angrier than when a fellow Migraineur tells me that their doctor said there's nothing left that they can do to help them. Seriously? Well, let me set you straight on that. It would take a very rare case indeed for there to be nothing nothing left to try. There are so many preventive options available today that to give each one of them a fair 90-day trial would take in excess of 25 years of trying a new one every 90 days with no breaks. There are fewer abortive and rescue options, but for a doctor to say there's nothing left to try is simply unacceptable.

So, what's the most helpful element of Migraine management? There are two:

  1. a good doctor who's willing to work with us as treatment partners,
  2. a good attitude on the part of both the Migraineur and the doctor.

That's where the word "Migratude" comes in.

We must combine our aptitude for learning about and coping with Migraines with a positive attitude toward Migraine management and living with Migraines to come up with a...

great Migratude!

I'll leave you with a bit of inspiration from the magnificent Patti LaBelle...

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Types of Migraine

Sunday-BouquetGood morning to my Migraine and Headache Family. I hope you're doing as well as possible today — that the weather is pleasant where you are, and that your head is being kind to you. 💕

When discussing Migraine or other headache disorders, the International Headache Society's International Classification of Headache Disorders (ICHD) is the gold standard for classifying and diagnosing headache disorders. The ICHD is now in its third edition (ICHD-3) and can be found online. There are sound, logical reasons for using standardized diagnoses:

  • It helps keep everyone "on the same page."
  • It simplifies matters if and when patients need to seek care from someone other than their regular health care providers.
  • These criteria give researchers a standardized set of criteria so that research is more uniform and valuable.
  • It's far easier for discussion purposes if everyone is using the same term to describe the various disorders.

Unfortunately, even some doctors don't use the ICHD-3 diagnoses on a regular basis. This is most likely due to how little doctors are taught about Migraine and other headache disorders during medical school. Unless a doctor is a Migraine and headache specialist or a neurologist, they may not be aware of the ICHD-3.

There are several patients who write about Migraine and headache online and/or are patient advocates for Migraine and headache patients. When we come across a discussion where a form of Migraine is being discussed, and it's not a standard ICHD-3 diagnosis, we generally give people information about the ICHD-3 and the "official" forms of Migraine. If you're part of one of those discussions, and one of us posts information for you, please don't be offended. We're just trying to offer information and support. Continuing to learn about our Migraines is one of the most valuable tools we have for working effectively as treatment partners with our doctors, and we all want to offer you the most accurate information possible.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Grace and Equanimity

Sunday-BouquetGood Sunday morning to my Migraine and Headache family. I hope you're feeling as well as possible today and that your Migraines and Headaches are being kind to you.

One of the most most enormous challenges of living with Migraine is living with Migraine with grace and equanimity. It's certainly a challenge with which I've struggled for many years. Last week, I conversed with someone who is currently dealing with many severe challenges from her Migraines. To top things all off, a so-called "pain psychologist" was trying to tell her it was all "in her head." Seriously! The psychologist was trying to tell her that her Migraines could be stopped with therapy. Yeah, right.

Personally, in that situation, I don't know that I could handle things as well as she is. It's entirely possible that I'd tell the psychologist exactly what I thought of that theory, contact my insurance company and tell them not to pay them, and be very angry. But that's not how the dear lady I was conversing with handled it. Instead, she simply asked for some information to confirm that her reaction to the psychologist's advice - that the psychologist was wrong - was reasonable so she could continue to trust her instincts and her neurologist's advice. She told me she's been making some progress with her neurologist, and she's happy about that.

What incredible grace she showed under terrible pressure! I hope she reads this post because I want her to know how very much I admire her. As I continue thinking about it, I realize that the way she handles such challenges also makes life calmer and easier for her. Truly, I need to follow her example and not worry so much about things.

Do you know people who are able to handle life, Migraine, and other challenges in this way? I hope so. She came to me for information, but I'm the one who learned and benefited from the conversation.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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