Sunday Thoughts on Living with Migraine: Time to Play

Sunday-Thoughts-VioletsGood morning to my extended Migraine and Headache family. I hope last week was as kind to you as possible.

Last week, I learned a valuable lesson from Binx, the cat who owns us. Binx is a young cat, just a year old, so there's still a lot of kitten in him and his behavior.

I believe very firmly that bringing a pet into our home carries the responsibility to do everything possible to see to it that he's healthy and happy. Binx seems to firmly believe that it's his responsibility to follow me everywhere I go when I'm home. It appears that I've become a piece of cat furniture and one of his favorite toys.

Binx500bA few days ago, I went upstairs from my office to get a glass of tea. Binx followed me and was running in circles around me. When I walked down the hall to our bedroom, he ran ahead of me and jumped up on our bed, where be began attacking imaginary things under the blankets. 

Obviously, Binx was in the mood to play. I sat down on the bed, put my hand under the blanket, and let him stalk and pounce on it for a while. Then, he bopped me on the nose with his paw and tore off running down the hall. I did what I was supposed to do at that point, and followed him. As I walked out of the hall and into the dining room, a black flash came out of hiding and wrapped all four paws around my ankle.

After playing with Binx for a good half hour, I went back to my desk. I'd been having trouble with an article I was writing, but suddenly, the rest of it came easily. 

What hit me is that I've been so busy lately that I've not only been neglecting Binx, I've been neglecting myself too. We all need "play time," time away from work and the concerns of daily life. So, that's the lesson Binx taught me, and it's amazing how much it's helped me. 

Do YOU take time to play and relax? Remember that when we're stressed or not taking care of ourselves, we're more susceptible to our Migraine triggers. Take a bit of time to play, and have a great day!

Live well,

 because a migraine is NOT "just a headache"
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Sunday Thoughts on Living with Migraine: Expressing Pain

TulipThoughtsGood morning to my extended Migraine and Headache family! I hope all of you are doing as well as possible.

In a more perfect world, everyone would be kind and compassionate, and they'd understand people living with debilitating diseases. The sad fact, however, is that we don't inhabit such a world. We also live in a time when, thanks to examples set by some of our leaders, it seems to be acceptable to criticize people, call people names, and be downright nasty. 

Since we have to live in this world, it would serve us well to find ways to educate others about Migraine disease, it's impact, and us - the people who live with Migraine.

I've written about various ways to raise awareness and advocate for ourselves. Last week, I observed some discussions about Migraine that gave me a bit of insight into something we may be doing that weakens our efforts and may cause people to take us less seriously. 

What I'm referring to is how we sometimes talk about our pain levels and how ill we feel. Let me offer you a few examples taken from recent online discussions:

  • "I've had a 12/10 Migraine for three days now."
  • "My head is going to explode, literally."
  • "The nurse in the ER rolled her eyes when I told her my Migraine was at least a 13."
  • "My pain is at a 10, but this aura is totally off the scale; I can't see anything."

I totally understand that the pain and other Migraine symptoms can push us to the edge. But statements such as those above contain huge issues. Let's look at each statement:

  • "I've had a 12/10 Migraine for three days now."
    Most people use a scale of zero to 10 to scale pain, with 10 being the worst pain imaginable. It doesn't do any good to say we're beyond 10. If we're talking with a doctor, he's asking us to scale our pain so he can better decide to help us. We're not helping him help us when we exceed 10. If we're talking with other people online for suggestions and support, saying were at 12 out of 10, many people are going to dismiss us, thinking that nobody could be online if they were in that much pain.
  • "My head is going to explode, literally."
    Seriously? Nobody's head is going to "literally explode" from a Migraine. Don't shoot the messenger here, but statements such as that one are a good way to get branded as a "drama queen." This type of statement leads to less understanding, not more.
  • "The nurse in the ER rolled her eyes when I told her my Migraine was at least a 13."
    Well, the nurse shouldn't have rolled her eyes, but again, that's a result of "exaggerating" and going beyond the limit of the pain scale. 
  • "My pain is at a 10, but this aura is totally off the scale; I can't see anything."
    I didn't see this one myself. A friend related it to me, and she was wondering how the person could see to post the long post this was taken from if she had a Migraine aura so bad that she "couldn't see anything."

I realize this is a sensitive topic for some of us, but I'm asking you to give it some consideration and not shoot the messenger here. When we're in a lot of pain and/or experiencing other extreme symptoms, it can seem natural to exaggerate a bit for effect. But, such exaggerations shine the wrong light on Migraine disease. Such statements are unlikely to make other people want to understand better. They're more likely to elicit the response someone got from the ER nurse, eye rolling. 

When we're seeking medical care, it's important to be as accurate as possible so we can help the doctors and others help us. 

There's another potential negative impact of such statements. Instead of reducing the social stigma associated with Migraine, they're more likely to reinforce and perhaps even worsen that stigma.

Let's find ways to express our pain that put people on our side, wanting to learn more, wanting to help us. Many people don't realize that Migraine is a genetic neurological disease... that we can have a Migraine every day... that sometimes the nausea, light sensitivity, and other symptoms can be so severe that they're incapacitating even without the headache. Here's something else many people don't realize - even if our pain level is low or moderate, perhaps a four or five, having that pain day after day wears on us. 

Please give this issue some thought. It truly is important.

Live well,

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

 

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Sunday Thoughts on Living with Migraine: After Awareness Month

TulipThoughtsGood afternoon, and happy Sunday to my extended Migraine and Headache Family!

Migraine and Headache Awareness Month (MHAM) was in June, but the need to raise awareness never ends. Lack of awareness in the general public results in:

  • the perpetuation of myths and misconceptions about Migraine, Cluster Headaches, and other Headache disorders
  • the continuation of the social stigma associated with Headache disorders
  • discomfort and reduced quality of life for people who have Headache disorders

Advocacy-All-Year-300So it's important that we strive to raise awareness all the time, not just during Migraine and Headache Awareness Month.

Since you're reading this, it's a given that you spend some time online. Social media outlets such as Facebook and Twitter are magnificent ways to share information and raise awareness! They're easy to use, and quite a bit can be accomplished with minimal effort. That makes them great tools for those of us whose time and energy are limited by chronic Headache disorders.

One easy way to keep track of awareness and advocacy opportunities is to keep an eye on my Facebook page. I'm constantly posting links to educational articles about Migraine and other Headache disorders, Migraine and Headache treatments, and events such as Headache on the Hill and Migraine and Headache Awareness Month. Simply sharing these links on your Facebook page is a quick and simple way to help raise awareness.

If you're looking for the most recent information about Migraine and other Headache disorders and their treatments as well as support and advocacy and awareness info, check out our HealthCentral Migraine Management group on Facebook.

A don't-miss source of information and support is the American Migraine Foundation's Move Against Migraine campaign. You can check it out on the American Migraine Foundation web site or through the widget below.

There are many ways to raise awareness year-round. I've barely scratched the surface here. If you have ways to raise awareness that you'd like to share, please leave a comment, and tell us about them. 

Live well,

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

 

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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.

Migraine-We-Can

Live well,

 because a migraine is NOT "just a headache"
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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.

Live well,

 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...

MothersDay17

Live well,

 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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