13 ways to survive working with Chronic Illness

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I have been a full time teacher with Chronic Migraine.

I have been a full time stay at home mom with Chronic Migraine. 

I am a full time mom and part time teacher with Chronic Migraine. 

They all are difficult jobs and adding a chronic illness makes life even more complicated and difficult.  

So the questions remains, how do you work while having Chronic Migraine?  How was I able to return to work

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  • Work part time

I only work a few days a week and seem to have letdown migraines on my days off.  I save time for self-care during those day.

Tip: Know time off policies and if a substitute is available

 

  • Find coworkers who support you

At my job that I missed a lot of time off, my boss was arrogant and my coworkers were judgmental.  With my new job, my coworkers are like a supportive family and my boss is loving and understanding.  This benefits the group because I’m not motivated to work out of judgment or consequences but out of commitment and love for the job and workers I call friends. I really have fun at work and love to be there.

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  • Ask for and learn how to accommodate your needs 

I requested that my classroom be on the side of the building that does not get direct sun or heat.  I also have control over the lighting.  Heat and lights (fluorescent) are especially big triggers.  I use Axon Optics glasses on days I need extra light protection for my eyes.  I use other lotions, oils and natural products to treat myself topically.

  • Understand clients

I found that when I disclosed that I had Chronic Migraine to my boss at one job I was judged and at my current job she understood me better.  The same goes for clients.  As a teacher who was missing work, I sent home a letter explaining my chronic disease.  I found that the parents were very open and appreciated my honesty but I was unsure what the feedback would be.  Understanding the children and families I work for has allowed me to personally connect more.  I feel like my families want the best for me as I want the best for them and mutual respect once again motivates me.

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  • Low stress, high reward

With a part time position, my stress has decreased tremendously.  I am able to focus on myself, my family and other aspects of my life other than my job.  Stress was my main factor in turning episodic to chronic.  I now have a handle on how to deal with stress and my priorities are different.  As a teacher without children and now with children, my views on teaching are very different. I have always had a passion for teaching and love children.  The reward is huge!!!  Being someone who is making a difference every day and seeing growth in my students is so rewarding. 

It gives me pure joy and joy is great medication! Find joy in your job.

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  • Set realistic goals and expectations

Putting pressure on myself to be something I’m not only raises stress.  I have realistic ideas of what I can do, what I want to do and how I’m going to attain those goals.  Setting myself up for failure will only derail my treatment.  I set goals I know I can reach and am proud when I meet them.  A positive attitude and learning from the past allows me to move forward.

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  • Commute

Driving is extremely difficult with even a low grade migraine.  At my old job I had a longer commute and found that many days I was throwing up on the side of the road before and after work.  At times I liked it to decompress but most of the time was pained from the drive.  I now have a short drive that I can drive to with my eyes closed (don’t worry, I don’t but I could).

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  • Water, coffee and snacks

Caffeine can be a benefit or trigger.  Coffee  is beneficial to my migraines. During my morning of teaching, I drink coffee before the students arrive and drink a huge water bottle throughout my day.   As a class, we have scheduled potty breaks and snack time so we all get time to refuel. 

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  • Sleep schedule

I wake up the same time every day whether I’m working or not.  I stay on a consistent sleep schedule in order to be refreshed and ready for my day.

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  • Take breaks

When I feel a migraine raising, I get a bit panicked.  During my students specials I have the ability to take a break, focus, drink more coffee, or water.  Just allowing 10 minutes of quiet and focused breathing make a world of difference to my rising pain.

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  • Use flexible work time if possible

I am able to get a lot of my work done outside of the classroom.  I am also a busy mom and find that planning and prepping can be done once they go to bed.  Instead of staying late at school, I bring a lot of my work home and also plan ahead.  By being over prepared I am able to relieve stress.  If I’m sick in bed and worrying about work, I get sicker.  When I have everything done, being sick for days doesn’t stress me out about work because I know I’m prepared.  Planning and being prepared makes my life, in general, much easier.

  • Moving my body and distraction

There are days I go to school feeling sick and am completely consumed by my students.  The minute my students leave and all is quiet, the pain comes flooding back.  I’m so distracted and filled with endorphins while I’m at school that at the end of the day I’m punished more.  There have been days that I work till lunch and am in bed until the next day.  The distraction of a job that I love helps me get through many mornings.

Having a job that I am active in helps.  Stretching, dancing and moving keeps my body active.  I would not be unable to sit at a desk staring at a screen all day.  My body needs to move and my brain needs a break from technology.

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  • Money vs time

As a part time employee in the teaching field, you can imagine I’m not a millionaire.  Working salary and full time was not something I could keep up with.  Working part time, I do not make a lot of money but am able to do what I love with people I care for.  Sometimes money isn’t everything (although it pays for my medical expenses, so I really need it).

 

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 With all of this said, I found a dream job.  Not everyone gets to work part time (either financially or in their field of interest).  Disability is difficult to get as a migraine sufferer and most jobs it is difficult to find balance.  Time off isn’t always possible without consequences and substitutes are not common. Falling behind on work is inevitable.  Finding coworkers that are friends is not a choice but a lucky draw.  The same goes for bosses.

All circumstances and lives are different.  I encourage you to find something you love.  Find a part time job, a job online, a job that can be flexible and a job that makes you happy.  Migraine is the definition of pain and unhappiness…..find something you love and makes you better.  Easier written than done, I know!!!

I, honestly, was not sure if I’d ever be able to go back to teaching with how severe my disease is.   I took a chance and it paid off.  I was very aware that it may not be possible, but I never let that deter me.  I tried it and it worked.  Not every job works but I’m so glad I took that leap.

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How do you feel about Participation Trophies?

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Growing up, I was involved in a lot of athletics and competitive events.  I have a box full of trophies, medals and certificates showing my success.  As my children begin their own adventures into the sports world, their generation’s parents have created a push for participation trophies.   While receiving a medal for my participation and fundraising efforts for Miles for Migraine, I took a second to reflect.

How do I feel about participation trophies?

When I received my medal, I felt good.  I felt happy, proud, and I did something for a good cause and myself.  The trophy made me feel like a success.  My children also received participation medals for their Tball and softball efforts this summer.  In our cases, we were not playing winning or losing games.  We participated and were rewarded for our efforts.

I think participation should be recognized at a noncompetitive level.  I see the recognition for both my children and myself this summer as motivation.  The medals we received were mementos of the hard work and dedication to the race and season.  My children are young and beginning to find what interests them.  Children need to be motivated.  My son’s league was not keeping score, there were about 20 four-year olds playing in the dirt more than playing the game.  They didn’t even understand the concept of score.  A game without a score is a game of instruction  not winners or losers.   

The only thing I can say about the medals is that they look at them and want to play next year.  They have a physical reminder of their good memories and the fun they had throughout the year.  If the medals were a pat on the back to say good season, I think a snack would have done the same.  My son looked forward to the snacks at the end of the game as much as the game.  I think a pizza party and snacks could have been just as an effective participation trophy.

Once they get into the winning and losing age of sports, I think medals should go to the winners.  Will they always win and be rewarded?  No, that’s life.  They will learn how to overcome setbacks, see progress, learn how to have sportsmanship and how to be a team.  Loosing is part of life and participating does not mean a reward is given.  If you show up at work but don’t get the job done, are you still paid?  Probably not for long.  Sports teach lessons of winning, loosing and working hard to be the winner and best.   Endless lessons can be learned without rewarding those who just showed up.

I think rewarding those who show up when it’s noncompetitive is ok.  We all felt good and were reminded of our dedication.  I felt proud of what I did and want my children to feel the same.  Overall, I think we all need to be reminded to keep trying and getting better.  I think a snack can be swapped for a medal and that the trophies can be saved for the winners once they are to that point.  If they don’t have a box full of trophies at the end of their lives, does that mean they are losers?  No!  In fact, they may learn more from losing than winning.  It’s all about the process not the gift.  I will take lots of pictures to save those moments as reminders of the ups and downs.  They won’t need a trophy to remind them they showed up.

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Participation trophies have turned into a way of saying the game doesn’t matter.  As long as you got dressed and showed up that day you are a winner.  The real world doesn’t reward you for showing up.  The real-world needs people to show up then do something!  It’s the something that counts.  They don’t need to just show up for school, they need to do something!  They need to work hard and get better to be a winner in life.  It will hurt to learn that sometimes they just aren’t good enough, smart enough, fast enough.  As an overprotective mom, I don’t look forward to those moments.  I will sit and cry with them when they lose but I won’t be giving them a trophy.  I’ll give them a hug, a sports tap and get them back out there.  It’s not the things in life that motivate, it’s the experiences.

When you fall off your bike, get back on and ride.  Your trophy will be knowing how to ride the rest of your life.

Now let’s go have a snack!

 

Last year’s birthday and migraine motivation

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This week is my birthday! As I looked back at where I was last year, I was struggling but happy. I’m about the same but can say I’ve seen growth. I strengthened my time management this year and really focused on doing things that make me happier and healthier.

I started a new job that inspires me to feel better, gives me a new sense of purpose and the people there make me smile and laugh.  Being a teacher and changing lives is very motivating and the families I work with are incredible!

My Migraine Life has done a lot of great things and I’m very proud of my blog being so unique and well received. I had never read a blog when I began this journey and I’m proud that I created this community and am helping so many in my own way.

Please endorse My Migraine Life for Wego Health Awards. It’s a nice thank you for all my hard work!  Just go to the link and scroll to the thumbs up!

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I still have a lot of “bad days” and feel better knowing that on my less painful days I’m helping and teaching so many.  I’m using my good days for the good and that is the best I can do.  On those bad days…..I’ll “just keep swimming!”

Last year’s birthday post!

Disney World. The bad

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Every good side has a bad side. I was happily surprised that I saw little bad while I visited Disney World.  The bad thing that I did see was ungrateful people.

My experience with meditation didn’t go well but something I find easy and beneficial to do every day is to show gratitude.  It comes easily being I have a disease that keeps me in a cold dark room and even the littlest bit of relief allows me to be grateful.

I also was a special education teacher for children with severe needs.   I can tell you that when you’ve worked with a child that is severely Autistic or is multiply handicapped you see the world in a different way.

So here’s the bad about Disney World….ungrateful adults.  I have always been able to work with difficult children because of the reminder that they don’t know any better.  I don’t give adults that benefit of the doubt.

As I was standing waiting for my family after a bathroom break (I told you we were hydrating!) I saw a most ungrateful man. He literally stopped in front of me and screamed at his daughter (or could have been his granddaughter, I couldn’t tell) about her band aid falling off her hand.

First of all, band aids fall off a moving hand.  Secondly, shame on him for yelling and embarrassing his daughter about such an insignificant thing.  As she hung her head I could feel the anger rise in me.

I texted my best friend and told her I considered tripping the man (hopefully scrapping his hand) and handing his daughter an extra band aid to put in her pocket.  I don’t go anywhere without band aids.  Kids fall and when they fall they need a band aid.  Even when there isn’t blood, sometimes a band aid just makes them feel better.

You know what doesn’t make them feel better, getting yelled at in a group of people.  How ungrateful!  He was worried about this tiny detail of his day and I am sitting there thinking of the Make a Wish family that had just walked by me.  I bet that family wasn’t worried about a band aid.  I bet their worries were real and powerful and that they would give anything to have their biggest problem be a band aid.  That family was smiling and laughing and  not worrying about such a small thing because they know BIG problems.  I wish that family could talk to that man and tell him about real anger.  Not anger at their child but anger at what they were suffering from.

Another time I saw the bad side of Disney was when we were on a ride. At one point the ride stopped and they made a statement about the ride stopping and that it would start again in a moment.  I heard a woman behind me groan and start loudly complaining about how she couldn’t believe it was ruining her ride.

It’s a funny thing about perspective.  My first thought wasn’t to complain it was to hope.  I sat there hoping that the boy I saw in a wheel chair with a feeding tube was being carefully wheeled onto the ride.  While this woman was complaining I was hoping that this sweet child would be able to experience the beauty and wonder of the ride that I was getting to enjoy.   While this woman was complaining with her working legs and loud mouth I would be interested to hear what that dad I saw pushing him would think.  I’m glad he couldn’t hear her and hope they got to enjoy!

Are these people bad people, of course not. I only heard and saw a small moment of their day.  No one is perfect and I ‘m sure they were dealing with their own issues.  Everyone has problems and everyone expresses them differently.  But from my perspective the bad thing about Disney is the ungrateful people.

I can’t go anywhere without negative people surrounding me and some days it bothers me more than others.  On a day that I felt OK and was literally looking to the sky being grateful for everything this world had provided me.  Then, I heard such nonsense of “band aid gate” and “let’s pause for a moment and complain.”

Let’s all show gratitude!

Part 3 of Disney World is coming.  You know it had to come…..the MIGRAINE!  This one has a great lesson.

Lessons your children learn or miss on vacation

img_9212I just came home from vacation with 4 children under 9.  When we left for vacation I was reminded that school districts look poorly on unexcused absences.  My answer was, “My children learn endless lessons on vacation and I’m not apologizing for showing them the world.”

While on the cruise I noticed lessons learned and missed everywhere.  Being a stay at home mom and teacher makes me see the world through different eyes.  I see my children and nieces as students in the real world.  I don’t have them in a classroom but I take opportunities to teach them as often as possible.

Waiting in Lines

Traveling requires a lot of waiting.  I’m writing this from the airport with a canceled flight and 8 hours of airport sitting.  When we travel, we wait in line for security, baggage, departure, arrival, check in, check out, and events that we attend.  Everyone waits in line but how they wait is crucial. 

As a teacher of three year olds, a line is a completely foreign concept.  We work on it all year long but it’s up to adults to show them how.  Are you waiting in line complaining that it’s not moving?  Are you pushing people?  Are you cutting and stepping in and out of line?  Patience my dear…..patience.

Eating

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On a cruise, food is endless.  With this, are endless options.  We don’t encourage our children to order mac n cheese every night (although my son would love it and cause me less issues).  I will fully admit my son is an insanely tough eater.  He cries through most meals and only eats about three things by choice.  I have a picky eater who ruins most meals for me.  This does not mean he gets what he wants.  On vacation we aren’t shoving veggies down our kid’s throats and we eat lots of desserts. 

We mainly focus on trying new foods.  What better time to try new things than an all-inclusive meal package?  They tried escargot (gross!), lobster, crab legs, fruit soups and more.  If they don’t like it, ok.  If they do, it gets added it to their vast pallet.  We take “No thank you bites” which mean they try it and say no thank if they don’t want more.  Try new foods.

Along with this comes table manners.  Even my three year old orders for himself and has for years.  Look at the waitress, order politely and wait patiently.  We look at how a table is set, why there are so many forks and put napkins in our laps.  At home my children set the table and having a beautifully set table is something they recognize.

Different cultures, languages and social studies

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Our children have classmates who are bi lingual but only hear them speak English in school.  When we travel, we see adults and children speak in their first languages and it’s a great learning experience.

 My son played with a little girl in the pool and neither one of them knew they were speaking different languages.  I sat and laughed watching them play in the water while joy and giggles spoke for them.

We saw different bathing suits, hair coverings, dress styles, jewelry choices and more.  Talking about differences in cultures is different than seeing it.  Both on the boat and on the islands we saw every color of skin, eye and hair color. 

They saw homes that look a lot different than ours.  Telling a child to appreciate their home and showing them a shack where children their age live is a lesson that lasts.  More is not always more and location dictates dwellings.  We don’t have brightly colored houses like the Bahamas and they don’t have snow barriers like Cleveland.  Location, location, location.

It was diversity at it’s best.  We rode in elevators with a swirl of languages around us.  We tried to identify where they may have been from and where in the world it was.  It was fun to problem solve and see social studies come to life.

Maps.  Maps can help teach scale (additional math lessons below).  It can teach location, direction, elevation, landmarks and more.  Wherever we travel we get a map.

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Math surrounds us everywhere.  Money is always an easy lesson.  Change, dollars, prices etc. are all opportunities for lessons.

We found lessons in walking the stairs when the elevators were too crowded.  How many floors till we get to where we need to go?  Addition, subtraction, counting stairs and more.  Active math can be better than paper pencil math.

At dinner we had my niece making patterns with the utensils.  Fork, spoon, fork, spoon, fork…  Now try spoon, spoon, fork, spoon, spoon, fork, spoon….

We had a ton of events to go to.  What time is it?  What numbers are on the clock?  How much more time till we need to go?  What time do we need to get up and what numbers will be on the clock?

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Technology

HERE COMES THE JUDGEMENT…..

Get the ipad out of your kids hands!!!!!  I was sickened by how much other children were missing life lessons.  If the schools are referring to those kids and missing school, I agree.  How you vacation with your children should dictate if you can miss school or not.  If your child is handed an ipad for a week, keep them in school!!!!!!  You aren’t doing them any favors by “showing them the world” when they are missing the world around them.

I sat at dinner for an entire week next to a family who gave their son an ipad at dinner and I did not see them speak to him ONCE!  It actually distracted me from my own family by staring at this poor child holding a screen 1 foot from his face for an hour straight each night.  Literally……NOT ONE WORD WAS SPOKEN TO HIM!  A generation without being spoken to or speaking was screaming in my face.

Do people say to themselves, “Let’s have a baby and not talk to him.”  I know this is super judgey but it’s the truth.  It’s easier to give technology than to speak to your babies, I get it (but I don’t do it).   We talk to our children and they speak to us.  Language development is hugely lacking due to technology.  Children should not have difficulty in conversation, in fact, they should be difficult to stop from their inquisitive natures.

We ask open ended questions that provoke thought…What was your favorite part of the day?  What was your least favorite part and how did it make you feel?  Who made you laugh today?  How did you feel when (a situation) happened?

Our children colored, did actual homework, read menus, played with characters and were aware of their surroundings.  Are my children perfect?  No child is.  Most nights we had multiple trips to the bathroom and walks around the halls while waiting for food. 

Like I said, my son is a picky eater and my husband and I battled him every night to cut his attitude and sit with us whether he was eating or not.  We left most dinners exhausted and frustrated but we didn’t take the easy way out.  He’ll thank us some day and onlookers thanked us as they left for the polite lovely children that we are raising.  I’m not kidding, we get complimented most places we go for their manners.

Technology is easy being a parent HARD.  If you got into being a parent thinking it would be easy, check the definition again….it’s HARD and requires real work.  Technology is not work.

As we waited in those lesson teaching lines, I mentioned above, I saw dozens of children with ipads again.  These aren’t educational games that my kids play at home on rainy days, they are manic, ADD producing, mind frying, delusion creating games (cue the negative feedback).  There is a time and a place for shows, movies and games and it is NOT ALL THE TIME!

Like I said, this is  judgey and I’m not perfect.  I typically try to be politically correct in my posts because I tend to lean towards: Everyone is different.  But in this case, if you want to battle me in saying that ipads are good to be in children’s hands at all moments I’ll take that challenge.

A generation that can’t self-entertain, don’t speak and are missing life lessons around them is frightening.   Children playing games sitting in diapers instead of playing in the pool is wrong!  Not talking to your son at dinner is not OK.  Waiting in a line and frantically searching through a purse to quickly soothe a toddler who needs to be swiping his finger while rewiring his small brain and is losing potential with each passing minute is tragic.  Kids who are only comfortable “talking” through their fingers saying things that they wouldn’t have the nerve to say out loud is their “reality”.

I can go on and on and on and on about this.  As a teacher, as a mother, as a human being watching my babies surrounded by robots is nothing short of terrifying!

 Conclusion

Circling back to the comment of schools not liking personal vacations, I ask you this…..Are your children learning and living lessons or missing them as a world passes them by?  Enjoy life and be present.  Being a parent is hard and a lot of my vacation consisted of cranky kids and not being easy.  We read books at bedtime, we talked, we grew together and we all had moments of tears and difficulty.

Life is hard and vacation should not consist of ipads and missing life.  Life is real, it’s fun, it’s different, it’s people, it’s tantrums, it’s conversations, it’s exhausting, it’s living school.  They can look and speak to adults, entertain themselves, use their imaginations and be kids the ways kids should be (the old fashioned way).

I’m not perfect, my kids aren’t perfect and I know no one is.  But together we enjoyed vacation and learned lessons that school or an ipad could not teach us………LIFE.

RANT and JUDGEMENT OVER…..

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Disney World tragedy and lessons I learned

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This morning I awoke to read that a toddler had been dragged into the water by an alligator from a  Disney World hotel.  I am so sickened by this.  I am so sickened by so much in the news, in fact, that reading has been a daily painful experience.  This world is a scary, sick and unpredictable place.  Hold your loved ones close!  I pray for so many today for so many reasons.

When I went to Disney World last year, I had a profound experience having the good, the bad and a migraine.  Please read my 3 piece series on Disney World and all that I learned and came away with.

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Disney world: the good

Disney world: the bad

Disney World: my migraine

 

 

Cravings with Migraine and triggers. Chocolate, salty foods, sugar and more

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Sugar!

Sugar!

I have a lot of good habits that I follow every day  to address my migraines.  If I ignore the things I do to prevent them, I would probably be bedridden permanently.  So the list goes on and changes constantly but I’m diligent and try really hard.  With all the good things I do there is one bad habit that I CAN NOT break.  It is my addiction to sugar.  I’ve read how bad it is, I know how fat it makes me but I just don’t care.  Anyone who knows me, knows this about me.  My father in law has bought me shirts that say, “I’m embarrassed at what I did for a Klondike bar” and “I run because I really, really, like dessert.”   He’s also gotten me “Mama needs a cocktail.”  All of the above are migraine triggers but we all need to pick and choose our battles, right?   It’s the truth.  Although I can’t run much anymore due to my migraines, I work out, partly, because I know my day will end with massive amounts of sugar.  I know for a fact that M&Ms  give me migraines.  It does not stop me.  I have a problem.  I actually have had more than one passionate conversation about how much I love M&Ms, the different types, and how a diet coke with them is like euphoria for me.  I literally look forward to each holiday so I can have the seasonal types.  I actually heard on the radio that M&Ms are the second most addictive food.  I don’t remember what the first one was because they had me at M&Ms.   M&Ms are only the beginning of my problem though.  Chewy candy and I go way back.  I remember for my 15th birthday my friend gave me a balloon with like 3 pounds of chewy candy weighing it down.  I had an ex boyfriend challenge me to a Sour Patch eating contest.  We never had the competition, but let’s get real….I would have won.  I eat fairly healthy and if I cut out sugar I would lose weight and eliminate a trigger for myself but I just can’t.  I justify it by saying this…..I would love to sit down and have a drink at the end of a stressful day but it just makes me feel miserable at this point.  I don’t smoke, I don’t eat fast food, I don’t gamble and I don’t shop for myself.  How do I relax at the end of a day…I eat candy.   I’m triggered by soooooo many things and eliminating my one vice just isn’t a priority to me.  So what happens when I don’t have dessert and the next day I wake up with a migraine because of the weather change?  Forget that.  Give me my candy.  If that’s the worst thing I’ve done today, I’d say I’m doing pretty good.  All of this is not mentioning the cravings migraines give me.  My husband and I were sure I would be a craving lunatic when I was pregnant but I wasn’t.  I crave sugar pre migraine way more than any craving I’ve ever had.  So my cravings and my bad habit are all in the same.  Sugar!  I have tried to stop but it just gives me a headache.  Like I said, one day I’ll get there, but it’s not a battle I’m fighting right now.  What’s your bad habit or craving?  I can’t be the only one!

I’d like to say I’m going to quit. Any advice?  How do I stop something that is a pre and post migraine craving and comfort habit?  

How do I give up sugar and not feel the emotional roller coaster of cravings & emotional withdraw?