Migraine disease can make us feel very alone and isolated. That's one reason there are so many Migraine groups on Facebook and one reason why #Migraine is often the most Tweeted hashtag. We seek information, we seek support. We look for somewhere we belong despite this disease that so often makes us feel separated from other people.
I'm a member of quite a few Migraine groups on Facebook, and I manage a couple of them. I also talk with administrators of other Migraine groups, and we've been struggling with managing our groups. There are two main problems:
Spammers. People who tell us they have Migraines and they want to join our groups for information and support. These groups have rules against spamming - trying to sell group members products or services. Yet, these spammers, once we let them into our groups, very quickly post links to sell things.
People being just plain nasty in their comments to other group members. It's fine to disagree with something someone posts. It is, in fact, inevitable that people aren't going to agree with everything posted by others. That shouldn't be a problem, but it becomes a problem when people get rude and nasty. It's simply not necessary.
Spammers are a huge problem on Twitter too. I've seen days when spam Tweets outnumbered legitimate Tweets for hours at a time. Some promise a "cure" for Migraine disease, something that isn't yet possible. Others are selling crystals and other things on eBay, still others have nothing to do with Migraine, yet they use the #Migraine hashtag. Last week, there were a couple of days when women were doing that to promote their nude photo web sites.
Twitter also has its share of nastiness. A couple of weeks ago, someone Tweeted a link to a web site to me. She was trying to interest me in having surgery for my Migraines. When I wasn't interested, she said that I didn't want help, that I only "wanted pills," and some other pretty nasty things. She then said she didn't know anything about me. Even though she was being nasty, that made me laugh and shake my head. My Migraines are very well managed right now with the FDA approved Spring TMS device. I explained to her that I'm having only one or two Migraines a month, and that the Spring aborts about 85% of them. Why on earth would I want to have a surgery at all, let alone surgery for which there isn't any double-blind, placebo-controlled clinical data to support? The discussion got nasty enough that I blocked her on Twitter.
My point is that there's enough nastiness in the world without Migraineurs being nasty and rude to each other. We should be sticking together. We should be kind to each other.The fluctuation of neurotransmitters that occurs during a Migraine can definitely affect our moods and make us cranky. We need to be aware of that and either take it into account when commenting to other people, or wait until we feel better. Even if we're commenting to disagree with something someone said, it can be said in a kind and respectful manner. People who want to sell things should do so in places where it's allowed, not in places where it's prohibited. Anyone selling something needs to be honest and not claim to have a "cure" for Migraine. These people need to stop preying on people who are so desperate for relief that they'll try just about anything. They need to get a real job and be kind to others by not preying on them.
Earlier 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.
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.
Happy Sunday and Happy New Year to my extended Migraine and Headache family! Wherever you are, and whatever holidays you've celebrated, I hope today will be the start of a wonderful new year for you.
I don't make New Year's resolutions. I used to, but every year seemed to result in failure in keeping them. Maybe I set the bar too high. In any case, instead of making resolutions this year, I'm starting 2017 with a promise to myself — a promise to be positive, regardless of what comes at me.
There are several reasons I'm making this promise:
A positive outlook is essential to the success of Migraine treatments. If we begin a new treatment thinking it will fail, it most likely will. If we begin it with a positive outlook, it has a chance to work for us. (Take a look at Hope Is an Essential Element of Migraine Management.)
Negativity only breeds more negativity. It's similar to the issue with Migraine treatments. If we have a negative outlook and enter situations with that negativity, it's unlikely that those situations will have a positive outcome. Negativity sets us up for failure and makes pretty much any situation worse than it was to begin with.
I want to be happy, calm, and productive. While that may seem to be a simple statement, we all know that accomplishing it is far from simple. Life is chock-full of problems and stress. For my physical, emotional, and spiritual health, I'm promising to be positive so I can control the problems and stress instead of them getting me down.
I hope you'll give this some thought and join me in promising to be positive in 2017.
I 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.
Whether 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!
Happy 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:
Good morning, and happy Sunday to my Migraine and Headache family. As always, I wish we could have a day when nobody in our community has a Migraine or Headache, but since that's just a beautiful wish, I'll hope that the day is treating all of you as well as possible.
All of the months leading up to the recent Presidential election were... well, I'd say difficult, but that's an understatement. I can't think of a word that adequately describes it. By the time election day arrived, I'm sure many of us with Migraine were impacted by the stress. I know I certainly was. Although stress itself isn't a Migraine trigger for me, there are other triggers I have to watch out for during stressful times - dehydration, skipping meals, messed up sleep.
I first voted in the Presidential election of 1972, the year I turned 18, and the first time 18 year old citizens could vote. I was excited about it because I love my country, and I see voting as both a privilege and a responsibility.
In the years since then, I've never seen anything as shameful as the rhetoric spewed forth during this last election. Never. Although still proud of our country, I was truly ashamed of many people. The issues were nearly lost in the vitriolic stream of name-calling and worse. It didn't stop with the candidates, and it didn't end with the election.
The FREEDOM OF SPEECH that we enjoy and that allows us to state our views doesn't give us the right to devolve into UNpeaceful protests, property damage, and threats. The election is over, and everyone on both sides should be moving forward and being gracious toward others. Our country and our citizens face many enormous challenges, and we'll only overcome them if we work together.
Anyway, I came across a video yesterday that I think everyone will love. Please note that the song is performed entirely a cappella. Even the snare drum sounds are made by one of the vocalists. Please, sit back, relax, enjoy the song, and remember why you're proud to be an American.
Happy Sunday to my Migraine and Headache family. It's inevitable that some of you have a Migraine or Headache today, but I hope you're having as good a day as possible. 😍
This past week, I had occasion to think quite a bit about people who think of themselves as a victim of Migraine disease. Some even call themselves victims.
Before I go on, let's look at the definition of victim from Dictionary.com:
Victim: "a person who suffers from a destructive or injurious action or agency."
If you consider what we experience during a migraine attack as suffering and consider Migraine disease an injurious agency, I guess a case could be made for calling Migraineurs victims of Migraine disease. However, I truly dislike the connotations of the word "victim," don't like or want to feel like a victim, and don't want to be seen as one by others.
"Victim" is a word I'd just as soon wipe from my vocabulary. A far better word is "victor," which is defined by Dictionary.com as:
"As person who has overcome or defeated an adversary."
Please think about it for a moment. We have a choice. We can choose to let ourselves be victIMs of Migraine disease, or we can choose to be victORs.
When I had my first Migraine 50+ years ago, there weren't many Migraine treatment options, but that has changed dramatically over the years. Today...
We have abortive medications that work to stop the Migrainous process and the symptoms of the Migraine attacks - triptans such as Imitrex (sumatriptan), Maxalt (rizatriptan), Zomig (zolmitriptan), etc.; ergotamines such as DHE and Migranal; and the Midrin equivalent medications. Some of the triptans are now FDA approved for children as young as six.
There are so many preventive treatment options that it would take in excess of 25 years to give each of them a 90-day trial.
There are doctors who specialize in the treatment of Migraine and other Headache disorders.
Anna Eidt is one of my chronic Migraine heroes. She inspires me with her positive and cheerful attitude, her gentle nature, her contagious smile, and her talent.
I was looking through her blog the other day and came across a post entitled A Letter to Anyone Who Feels Less Lovable Because of Migraine. Anna begins the post taking about two things she'd learned:
A couple of years back, I conducted an online survey for people with migraine and their caretakers/partners about managing relationships with migraine in the picture. I learned two things from this survey. The first is that I actually have no idea how to compile and meaningfully interpret the data I collected (I’ll work on that some day). The second is that migraine really puts all relationships to the test, and many people out there are living with partners who blame them for their pain and loss of abilities. As unhealthy and abusive as this may be, some feel/are stuck in these relationships because they are dependent on their partner as their sole caretaker or breadwinner.
This probably shouldn’t have been a surprise, but it was an important reminder of how lucky I am, and how infinitely important it is that people with migraine never stop seeking the support they need...
Anna was the winner in this year's Migraine Moment Film Contest back in June. If you haven't seen her video, please take a few minutes to view it. Note that she also wrote and performed the song that plays throughout the video. She's a very talented lady! See Must-See Migraine Video with a Song to Get Stuck in Your Head.