Sunday Thoughts on Living with Migraine - Your Valentine

Happy-Sunday-ChalkGood morning, and happy Sunday to my extended Migraine and Headache family!

Tuesday is Valentine's Day, and many of us have been making plans to show our appreciation for our Valentines. I want to take a few minutes to suggest that we each need to remember to also be our own Valentine. Yes, I realize that sounds a bit strange, but allow me to explain.

Valentine's Day is a holiday I always want to be very special for my husband. When we married, I promised myself that I'd never take him for granted or fail to let him know how much I love and appreciate him. Over the 31 years we've been married, he's been very supportive of my struggles with migraine disease and other health issues. He's never once complained or even seemed disappointed when I've had to cancel plans. He truly sees it as a gift when I'm feeling well, smiling, and feeling up to teasing him. He's told me that he'd rather have me feeling well than to receive a material gift or a special holiday celebration.

AirKiss-468899678So, one of the best Valentine's Day gifts I can give my husband is doing all I can to take care of myself and improve the odds that I'll be feeling well. In essence, I need to treat myself as my own Valentine. See what I mean?

Here are some things we can employ to work toward a happy Valentine's Day:

  • Plan ahead.
  • If food triggers are a problem, consider a celebratory dinner at home, where you can control what's served.
  • Remember if your Valentine is a good Valentine, he or she is more interested in you than in gifts, going out, etc.

We should do our best to take care of ourselves all the time. I've found that once self-care becomes a habit, it really can make a significant difference in our health. Please take a look at Recognizing and Meeting Migraine Self-Care Priorities.

Here's hoping that everyone has as great a
Valentine's Day as possible!

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 – Our Kids and Our Migraines

Fall-SundayAs I was reading posts in a Facebook Migraine group yesterday, I came across a post from a woman who was talking about feeling guilty when she's too sick with a Migraine to get out of bed and do things with her son. Her post certainly resonated with me because I too have felt that guilt about being unable to get out of bed and do things with my family. There have been times when we visited our children and grandchildren, who no longer live in our area, and I've laid in my hotel room bed crying - not from physical pain, but from the guilt and emotional pain.

There's a related issue here too. Our kids can be frightened by our Migraines, and they can feel a form of guilt themselves because they want to help us, but don't know how to help.

After thinking about these issues for a while, I thought I'd offer some suggestions that come from years of living with Migraine and times when I looked for solutions:

Find ways for children to help. Finding little ways for our kids to help us during a Migraine attack can help ease their feelings of being powerless. Depending on their ages, there are a variety of ways kids can help us:

  • Older kids can help with younger ones.
  • Older children can also help if errands need to be run or prescriptions need to be picked up.
  • Children can help by bringing us things such as a fresh cold pack, tissues, something to drink, etc.
  • Children who are old enough to read can help us take our minds off our Migraines by softly reading to us.
  • We can turn the tables a bit, and ask kids to help by softly telling us a story.

Find quiet activities that kids can do while staying close. Our Migraines are less frightening and disquieting to our kids when they can see and be near us. For younger kids, it can be helpful to keep a box or bag of things handy. Here are some suggestions:

  • Jigsaw puzzles. Get two pieces of sturdy plastic, cardboard, or wood for kids to use as a platform for jigsaw puzzles that are large enough to need more than one session to complete. Between sessions, the platform piece can be covered with the second piece and stored for the next session.
  • Puzzle books. Books of crossword and other types of puzzles can keep some kids occupied for significant periods of time.
  • Coloring books. With the current trend for adult coloring books, this can be an activity for kids in a wide range of ages. Keeping a "special" box of crayons, colored pencils, or markers to use during these sessions can make it more fun.
  • Writing stories or poems. Once children are old enough to read and write, writing can keep them occupied and encourage creativity. There's a huge variety of blank journals available that can give them a special place for their writings.

Teach kids about Migraine disease. Things that are mysterious and things we don't understand are far more frightening than things we know about. For help talking with children about Migraine, see How to Explain Migraine to Children, an article written at a level that children who are grade-school-age and above can understand. Another reason to teach kids about Migraine is the fact that they may inherit the disease. If Migraine is present in one side of the family, children have a 50% chance of inheriting it. That increases to 75% if Migraine is present in both sides of the family.

Migraine-GuiltThe bottom line:

The guilt we feel about not being able to do the things we want to do with and for our families is entirely natural, but it's a negative expenditure of emotional energy - energy that's best spent in positive ways.

Instead of letting Migraine win and beating ourselves up with the guilt, let's find ways that work to help our children work their way through their own guilt and fears, help us through our Migraines, have activities that can keep them engaged and close to us when we have a Migraine, and help them learn about Migraine. These things can be good for both our children and for us. Migraine truly is a family affair. It impacts the entire family. By dumping the guilt and employing creative planning, we can ensure that the impact isn't always totally negative.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine 7/31/16 - A Letter to Spouses

Happy-SundayGood Sunday morning to you all. As always, I hope the day and your head will be as kind to you as possible today and in the coming week.

Yesterday, I had a heart-wrenching conversation with a friend who has Migraine. She finds herself in a situation that's all too common. She has chronic Migraine and is struggling with not just the Migraines, but with a pretty much total lack of support from her family.

This type of situation makes me extremely sad. It also makes me pretty angry, especially when it's a spouse who's not being supportive because it's... well, it's just so wrong. As cliché and naive as this may sound, when we marry, we pledge to support each other, "in sickness and in health." People who don't really mean it, shouldn't get married. Once married, people need to stick by their pledge. To me, it really is that simple.

Yes, I know this may be somewhat futile, but I want to reach out to spouses of other Migraineurs who aren't supportive of their spouses. Here goes:

Dear Migraine Spouse,

You're married to someone who has Migraines. Migraines truly aren't headaches. Migraine is a genetic neurological disease caused by genetic predisposition and an overly excitable brain. It's characterized by episodes best called "Migraine attacks." If your spouse gets a headache during their Migraine attacks, that headache is only one symptom of the attack, and it may not be the worst of most debilitating of their symptoms. In fact, some very debilitating Migraine attacks occur with no headache at all.

Migraines can be triggered by many different things including changes in the weather, hormonal fluctuations, exposure to fragrances and other odors, some foods, and more. Triggers vary from one person to the next. Unfortunately, we can't stop our Migraines by simply changing our diet or exercising more. It's just not that simple. Some people's Migraines are so severe that they are unable to work, participate in family activities, or do many things that others take for granted.

Migraines can actually kill by causing fatal strokes or so thoroughly robbing people of hope that they take their own lives. Support from our friends and family is as vital to our survival as good medical care.

I'm sure your spouse's health issues seem burdensome to you. But, I can guarantee you that their Migraines are far more burdensome to them than they are to you. It can be difficult to know how to help your spouse with their Migraines. It can also be difficult to not be able to do more to ease their pain and suffering. There is much you can do to help your spouse, starting by supporting and believing in them. That's possibly the most valuable thing you can do for your spouse.

Learning about the type of Migraines they have and their treatments is also important. If you don't understand their Migraines and treatments, it's going to be difficult for you to help and support them. It's often a good idea for spouses to go to the Migraineurs' doctor's appointments with them. This gives you an opportunity to learn, know what the doctor is telling your spouse, and ask any questions you may have.

There are still many misconceptions about Migraines and a great deal of stigma attached to the disease. You need to know, however, that Migraine is a real neurological disease every bit as much as multiple sclerosis and epilepsy are. It's just perceived differently by many people, possibly because it's invisible, and there are no diagnostic tests that say, "Hey! This person has Migraine disease."

If, for some reason, you haven't been supportive of your spouse in his or her battle to live with Migraine disease, I hope you'll search your heart and work to be more supportive. Please let your spouse know that you want to understand and to help them.

Thank you!

TeriSig250White

If you want a copy of this letter, you can download it.

I'd be remiss if I didn't also say that there are many, many spouses who are incredibly understanding and supportive of their Migraineur spouses. They're the heroes who prove that people who have never had a Migraine in their lives can indeed understand what it's like for us to live with Migraines. John (my husband) is, thankfully, an example of this. He's never had a Migraine, and seldom even gets a Headache. Yet, for the last 30 years, he's been here for me when a Migraine strikes, when I needed to see a specialist eight hours from our home — for all of it. He may not know what a Migraine feels like, but he absolutely understands what it's like for me. So, to all of those spouses — Thank you! You're all heroes, and I love all of you.

Here's hoping that the coming week is gentle with all of us.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Migraine Awareness Month 26: "From The Outside Looking In"

AwarenessMonth2012BC2Good morning, and welcome to day 26 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.

From the outside looking in...

Most of my family and friends are only vaguely aware of my job as a patient educator and advocate.  It might surprise you to know that the majority of them don’t even know where I work other than ‘online’. 

I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.

Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions.  In reality this couldn’t be further from the truth.  Most of my time is spent either writing, or helping other patients online.  Most of these people think that spending time online must make me feel worse, when in reality the opposite is true.  Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap.  I stop for the day only when a Migraine is completely out of control. 

A few relatives think I waste my time each day in front of a television eating bonbons.  I wouldn’t know a bonbon if it stood up and introduced itself to me.  Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time.  I average approximately 12 hrs a day working as an educator/advocate.  It’s true that part of this time is my job.  However, the vast majority of it is volunteer.  Patients are my priority.  Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day.  I do my best and hope they see that.

A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it.  The reality is that I visit many online social media platforms, participating in too many of them to really count.  Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support.  I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other.  Hardly a waste of time in my book. 

I take my meds when I’m supposed to.  I distract myself from my pain every day.  I take out a little time each day to concentrate on things that cause me to pause with wonder and smile.  I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home.  I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular.  I struggle to be as normal as I possibly can, with a very *not normal* situation. 

It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details.  I think they don’t ask questions because the reality is that they don’t want to know the answers.  They know I live in pain and that makes them feel uncomfortable.  They don’t know how to talk to me anymore.  Mostly, they are uninterested and busy with their own lives.  That happens with all of us from time to time.

My hubs and kids know how I spend my time because they live (or used to) with me each day.  My kids are Migraineurs too, so they understand from that perspective.  My world became very small when I got sick and that’s okay.  It’s okay that they are the only ones who “get me”  because they are the ones who matter most.  And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.

 

~Ellen


Migraine Gem of the Day - Holiday Tips from Marcia Cross

MigGem166Desperate Housewives star Marcia Cross knows personally how debilitating Migraines can be. When I talked with her a few years ago, it was close to the winter holidays, so trying to avoid holiday Migraines was a major topic of discusssion.

One tip she offered was:

"Make party planning stress-free: Stress can make you more susceptible to your migraine triggers. Planning a dinner party for friends and family? Plan ahead and shop early. Enlist helpers and delegate duties to make last-minute details stress free as possible."

You can read more tips from Marcia and about her Migraines in Navigating Holiday Parties with Migraines - Five Tips from Marcia Cross.

Live well,


 

Puz-only-btn


Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated December 17, 2011.


Holiday Gifts for People with Migraines

Are you looking for gifts for people with Migraines? In my Café Press Migraine Awareness Gift Shop, you can find some gifts that are perfect for Migraineurs. The mark-up on these items is low, and all proceeds from the shop are donated to Migraine research.

Here are a few of the items you can find there:

MigraineBossTea150 "Migraine is not the boss of" me tea tumbler:

The Thermos tea tumbler is a cool way to keep your tea hot. The built-in infuser lets you brew-on-the-go, allowing you to spend less time in the kitchen and more time enjoying your tea. This is a must have for all tea lovers. This durable thermos has vacuum insulation, which keeps your tea hot but your hands cool. Drop some ice cubes in for an instant iced tea and a condensation-free experience.

 

MigraineBoss-iPadSleeve150

"Migraines are not the boss of me!" iPad sleeve:

This stylish iPad and iPad 2 case has double-backed neoprene on the outside and inside. It lets you express your individuality while also protecting your device. The personalized iPad sleeve cover is one seriously cool iPad 2 sleeve for show what you love.

 

 

TakeChargeHoodedSweatshirt200

"Take Charge" hooded sweatshirt:

Says, "The person with the most at stake gets to be in charge. Take charge of your health care!"

Stay warm with our Hanes Ultimate Cotton Pullover Hood. Constructed with a heavyweight 90/10 cotton/polyester blend. Thick (but not bulky), comfortable, durable and guaranteed

  • 10.1 oz. patented PrintPro® fabric in a 90/10 cotton/polyester blend
  • Standard fit
  • Spandex trim in cuffs and waistband

 

  MigraineDiseaseCapSleeveTee200

"Migraine: a DISEASE..." cap sleeve t-shirt:

Body-hugging close contoured fit. Size up for a looser fit.
Fabric Thickness:
Get into sporty, stylin' casual comfort with our Women's Cap Sleeve Raglan. Looks great on the go or just hangin' out. Made of 100% combed ring-spun cotton that gets even softer with each washing.

  • 6.1 oz 100% combed ring-spun cotton 1x1 rib
  • Shaped fit, side seamed
  • Contrast color cap sleeves and single-needle bound collar

 

FireHisSorryButtMousepad175

"Fire his sorry butt!" mousepad:

A mousepad with an attitude!

Keep your mouse rolling in style on our durable cloth top mousepad. A great gift for geeks, gamers, or anyone with a computer. Rubber backing prevents the mousepad from sliding. Machine washable.

 

KnowledgeIsPower175

"Knowledge Is Power" keepsake box:

Perfect for stylishly storing jewelry and mementos, this hardwood box showcases a ceramic tile. Spring-loaded hinged lid stays open without tipping the box over and snaps closed securely.

  • Made of solid hardwood with high-gloss lacquer finish
  • Interior is fully lined in velvet; bottom is covered with felt
  • Measures 5.5" x 5.5" x 2.25" with a 4.25" x 4.25" ceramic tile

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated December 15, 2011


Satisfied with Available Migraine Treatment?

Are you satisfied with the Migraine treatments that are currently available? Do you think doctors; the general public; your family, friends, and employers understand Migraine? Have the myths and misconceptions about Migraine and the stigma that comes with having Migraine disease gone away?

No?

MimeSignPetition
For more information about the AHDA petition to Congress, see Better Migraine Treatment, More Awareness - Take Just 2 Minutes.

If we don't speak up for ourselves, we can't expect others to stand up for us. Don't sit back and think that other people will sign the petition so you don't need to. This is not JUST another online petition. It is set up through a company specializing in delivering messages to Congress AND advocates from the Alliance for Headache Disorders Advocacy will PERSONALLY be delivering the petition to members of Congress during Headache on the Hill in March, 2012. If Migraineurs, their families, their friends, and others who are concerned don't sign this petiton AHDA advocates cannot succeed. Honestly, if you don't sign this petition and help with efforts to improve the state of Migraine research and treatment, you forfeit the right to complain about it.

Please sign the petition!

Live well,


 

Puz-only-btn


Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2011
Last updated December 13, 2011