Sunday Thoughts on Living with Migraine: Balance and Harmony

SundayThoughtsGood morning, and happy Sunday to my extended Migraine and Headache family!

The past week gave me much to think about as I spent time in several Migraine groups on Facebook. There was so very much going on, including:

  • Wonderfully constructive conversations about diagnoses, treatments, and awareness.
  • Great questions asked, then answered by community members who truly care about helping each other.
  • The sharing of links to some truly splendid articles and blog posts.

Unfortunately, there was also a downside to some of the activity, including:

  • A heart-wrenching post from a young man who has lived a long time with chronic Migraine, is losing hope, and is talking about giving up.
  • Some genuinely nasty comments from people who disagreed with what someone else had said, but seemed unable to be civil about it.

These last two items frustrated me for two main reasons:

  1. Hope is our best tool for living with Migraine and other headache disorders. It gives us the strength we need when our treatments aren't working, and the burden of our disease/disorder seems especially heavy. We must cling to that hope and share it with others. There are some ground-breaking treatments in development for Migraine and Cluster Headaches. With help so close, this is not the time to lose hope or give up.
  2. I simply don't understand the nastiness. It hurts not only those on the receiving end, but those being nasty. When someone is needlessly nasty toward others, I can't help but think that they're deeply unhappy people. 

It all comes down to balance and harmony...

We will always have both joy and sadness, pain and relief, hope and despair. That's a basic fact of live we can't change. What matters is how we deal with sadness, pain, and despair. And it matters a great deal how we treat other people along the way. Being nasty is a good way to end up isolated and alone. 

We need to seek balance and harmony. If there are times when we're in pain or despair, we need to exercise caution in how we interact with others. If we're interacting in writing, such as participating in Facebook groups, we need to reread what we've written before posting. If it's unkind, edit it, or just don't post until we feel better. During such times, it's also perfectly fine to post, explaining how we're feeling, and get support from others.

I'm an administrator or moderator for several Facebook groups for people with Migraine and other Headache disorders, and it's difficult. Last week, at the same time that I was trying to reach out to someone in real trouble, I was also dealing with people who were being so nasty to other people that I wanted to reach right through my computer monitor and smack them.

To those of you who manage to stay kind and helpful when you're in pain yourself, bless you! To those of you who post nasty comments to others, please stop and think. You're hurting both others AND yourself. Please look for balance and harmony.

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Sunday Thoughts on Living with Migraine: Choosing Civility & Kindness

Migraine-SignGood morning, and happy Sunday to my extended Migraine and Headache family.

Sorrowfully, this week's thoughts on living with Migraine aren't at all pleasant. In fact, they deal with a situation that made me not only extremely sad this past week, but physically ill. The various terrorism attacks around the world have  been really bothering me, as I'm sure they have all of you. The attack in Manchester last week had me crying every time I watched a news broadcast. For months now, another issue that I've found absolutely heartbreaking is the gratuitous public displays of people speaking so rudely and nastily to and about other people. People of power and authority — people who are role models — are employing name-calling and worse when speaking publicly. Instead of being leaders, they're sinking into the muck rather than speaking intelligently and in a manner befitting leaders. This horrible example is being emulated by others, either consciously or subconsciously. It's all been bad enough that I recently told my husband that if we were young newlyweds, I don't think I'd want to bring children into this world.

One way I've dealt with such sadness and grief has been to spend extra time with other Migraine and Headache patients, largely in closed Facebook group that's intended to be a safe place for all of us to share information and support without having to worry about spam and nastiness. I've also been spending some extra time on my own Facebook page, sharing links that I think will be of interest to my Facebook friends, both on Migraine and Headache, and on related issues such as health care.

Whether it's on my Facebook page or in the Migraine management group I own and manage, I don't expect people to always agree. It's not a black-and-white world. Besides, it would be horribly boring if everyone always agreed on everything. Disagreeing and discussing are just fine. That said, being rude and nasty are not fine — either on my Facebook page or in the Migraine Management group. People can disagree with each other and comment about that disagreement with civility and kindness. Whether one responds with civility and kindness or rudeness and nastiness is a choice people make when they write their comments and responses.

Last week, several people chose to respond with rudeness and nastiness both on my Facebook page and in the Migraine group. It was pretty quickly apparent in the Migraine group that part of the problem was members who commented about an article that was posted based on the title, without clicking through and reading the article. Even so, the rudeness and nastiness was an unnecessary choice.

In writing you to implore everyone to stop and think before they post comments and replies, and to choose civility and kindness over rudeness and nastiness. I'm convinced that the increase in this kind of posting is directly related to the increased rudeness and nastiness that we've observing publicly, especially in politics. Still, each of us has a choice in our behavior.

I said earlier that this had made me physically ill this week. It did, and that was enough to make me realize that I needed to do some serious stress management. One of the first things I learned in the college psychology classes I took is that only the person who owns a problem can solve it? I can't solve the problem of the way people talk to and about each other, but I can work toward solving how it impacts me. So, here's how I'm handling it. My Facebook page is just that — MY Facebook page. Any inappropriate comments posted there will be deleted, and the person who posted them will be blocked from my page. In our Migraine management Facebook group, rules have been posted about what is and is not appropriate behavior. Anyone who violates those rules will be removed from the group and banned from coming back. When it comes to the group, I owe that not only to myself, but also to the other members who count on it being a "safe" place.

Are any of you having problems with similar issues? If so, please feel free to comment and share your experiences and/or your suggestions for coping with them.

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 because a migraine is NOT "just a headache"
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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...

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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"
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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,

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 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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