The Naughty List

Santa Claus reading a wish list at home.

Whether you are ready or not, December is here and that means the holidays are right around the corner. This time of year always gives me reason to reflect on myself — what I am proud of and more importantly what I can do better. What is important to remember is that it’s OK to be human and that we all are constant works in progress. Especially those of us with chronic conditions — while we are fighting against an invisible illness everyday there are always going to be things we wish we could have done better along the way.

In that spirit, below are my list of confessions. If Santa were to judge, I’m afraid I’d be on the Naughty List this year. My hope is that through this honest reflection I can open up a conversation, make others feel less alone, and ultimately I will use it to hold myself accountable so in the future I can do better. And maybe next year I can aim to be on the Nice List.

  1. I still hide the fact that I have a chronic migraine condition from many people in my life
  2. During a period of bad attacks, I sometimes end up isolated for days without speaking to anyone and in turn feel very alone and like a waste of space
  3. Even after all these years, sometimes I forget to pack my medications with me in my purse, or on vacations and overnight trips
  4. In fear of the hospital, disdain for their bills and in an effort to avoid long waits and extra frustration, I never go to the ER anymore even when I think it may help, because I am that stubborn and afraid
  5. Even though I know it’s important, I struggle sticking to a regimented sleep schedule and suffer from bouts of insomnia
  6. Sometimes I don’t take my abortive medications right when I feel an attack coming on and I don’t really know why
  7. Sometimes I hide and sneak my abortives in public as if they are something to be ashamed of
  8. Sometimes I worry my friends and family don’t even believe my condition or think I am exaggerating
  9. A lot of the time I fake being well because I don’t want to disappoint those around me
  10. Sometimes I don’t tell my family when I have a migraine but I expect them to know that I do
  11. Sometimes I get depressed or frustrated with my condition and take my anger out on the ones that are closest to me and that I love the most
  12. Sometimes the guilt I feel from my condition overwhelms me
  13. I don’t like to talk about my condition too much because I think I will annoy those around me
  14. Sometimes I think there’s no point in discussing my condition because they can’t possibly understand
  15. Sometimes I worry that all my talk about migraine irritates people.
  16. Even though I am on dietary restrictions because of my condition, sometimes I cheat
  17. Sometimes I push myself and take risks I know could very well trigger an attack because I want to live normally and keep up with my friends and family
  18. I suffer from a severe case of FOMO
  19. I still hesitate to ask other people to accommodate my triggers because I don’t want to inconvenience them
  20. Sometimes it makes me angry that those who are close to me still don’t accommodate me by keeping  their voices down or lowering the lights when I’m having an attack
  21. Sometimes I get impatient with others’ complaints about their medical issues
  22. When other people talk about getting a migraine sometimes I question if they really had a migraine or just a headache

Worst Things To Say To A Migrainiac… EVER.

Woman and Woman Speech Bubbles

10. Did you take your meds?

Whenever I tell someone that I have a migraine 9 times out of 10 their first reaction is to ask if I took anything. To be honest, I have even caught myself asking someone the same thing when they told me they have a headache. The problem, though, is that headaches and migraines are different. Maybe its just an automatic reaction and people don’t know what else to say or how to respond. But as someone who suffers from chronic migraines I can attest that the second I feel a migraine coming on the first thing I do is reach for the drugs. So asking me if I took my meds is kind of like asking if the sky is blue. It’s insulting and annoying AF.

9. Drink Water. You’re Just Dehydrated.

I admit that water does have great health benefits and I’m a believer that its always important to stay hydrated whether you are a migraineur or not. Dehydration is definitely a trigger for some people, but once a migraine strikes chugging massive amounts of water isn’t going to make it magically disappear.  Trust me, if it could I’d most definitely be using that method instead of pumping my body with medication. If water could cure migraines I️ think doctors would have stopped searching for a cure decades ago.

8. You Need To Exercise More.

   All migraineurs are not created equally. Everyone has different triggers and symptoms, however, there are definitely things most migraine sufferers can agree on. For me, if exercise had a Facebook account our relationship would be listed as ‘Complicated’. I love to stay active for not only my body but for my mental health and I truly believe that when I am consistently working I feel better overall. However, my workouts are severely limited because anything that remotely resembles high-intensity tends to trigger a nuclear war in my head and sends me into a days-long head-pounding bender. I mainly stick to workouts like pilates, yoga, barre classes and long walks in the park but some days even that is too much for me. When I am going through a tough period, most days I’m happy to get out of bed let alone keep up my low-intensity workout schedule. Once I get thrown off my routine, it can take me weeks or even months for me to get back into it. It’s a complete catch-22 that I am constantly trying to balance. So next time you think exercise and meditation can fix any situation, think twice before you nama-say the wrong thing. 

7. Don’t stress over it. You’re just making it worse.

Of course stress is a good breeding ground for migraines but telling me not to stress over something just makes me more stressed out and angry and therefore negates the whole purpose of your sentiment. It’s like when you tell someone to calm down. It just gets them more angry. So don’t do it. Because now you’re the one making it worse.

6. C’mon. You can push through it.

Most migraineurs end up learning how to push through their pain and sugarcoat their chronic struggles to make others more comfortable. They learn to live with pain everyday because they have no other choice. They are forced to deal with discomfort on a scale that no one should have to learn how to function with. So when a migraineur gets to the point where they speak up and can’t take it anymore, what they need is someone to be understanding and to tell them it’s okay.

5. Have you tried this…?

The answer is probably always most definitely yes. As someone who has been suffering from this disease for over 16 years now, I can confidently say I have tried almost everything out there or looked into every option and if there is some new treatment or medication waiting on FDA approval I probably know about it and am waiting with baited breath for it to get approved so that I can try it.

4. It’s just a headache. It can’t hurt that bad.

No actually. It’s not just a headache. And it’s thinking like this that gives people like me a reason to not want to talk to anyone about my condition. This is why I think it’s not worth explaining to people what I deal with, because of the stigma that comes with the word migraine.

3. Are you feeling better yet?

A migraine can last anywhere from 3 hours up to 4 days or even longer. I want to be able to attend plans with my friends and spend time with my family as much as they want me there but the added pressure to feel better makes me feel worse than I already do that I am missing out.

2. You don’t look sick.

Migraine is an invisible disease. It’s one of the reasons it has such a bad stigma associated with it. So while I do enjoy a good compliment every now and then, just because I may look well on the outside doesn’t mean that I don’t feel like a team of masons are laying bricks on top of my head one by one until my eyes will inevitably pop out of their sockets.

1. It’s all in your head.

I really, really wish this were true. Unlike those who use “I have a migraine” as just an excuse when they call out sick from work, keeping the stigma alive, when I do it its the real deal. I’m not playing hooky. I’d actually rather be at work. Instead I’m laying in my bed in silence… with the blinds drawn, lights out, cold compress on my head, hoping for a miracle and wishing it really was all in my head.

 

10 Ways You Can Tell You’re A Chronic Migrainiac

Unhappy woman's form double exposed with paint splatter effect

10. You Give Zero Fucks

Before I ever experienced my first migraine I had a lot of different priorities. I worried about the same things many other 12-year-old girls cared about. Will the cool girls invite me into their clique? Does my crush think I’m cute? Can I talk my mom into buying me the newest Juicy Couture sweatsuit? What are the Spice Girls doing right now? Will my chest always be flat? While my love for the Spice Girls has not wavered — I am currently coveting the Victoria Beckham collection and am seriously concerned for the well-being of Mel B. — I can guarantee you post-migraine condition my priorities have shifted in a major way. I no longer care what people think of me. I try to take advantage of the few good days I get by living my best life the only way I know how and the only person that can define what that is, is me.

9. You Wear Sunglasses Indoors & You Are Not Anna Wintour

Anna Wintour is a badass. She  rocks sunglasses whether she is inside or outside and she rocks them like the boss lady she is. Some people may find it offensive when they see regular people wearing sunglasses indoors. They assume anyone who’s wearing them must think they are just too cool. Some people might be right. But light sensitivity is one of the most common side effects of migraine. When I’m having a migraine attack, the smallest sliver of light can feel like I’m camped out on the sun. A dark room may even feel too bright. The brightness levels on my phone and iPad screens are always set on the lowest possible setting and that’s not even enough to lessen the feeling that a tiny person is taking an ice pick and chipping away at my eyeball when I look at it. So next time you see someone wearing their sunglasses indoors, they may not just be making a fashion statement.

8. The Font On Your Phone Is The Same Size As Your Great-Grandmother’s

I can’t tell you how many times I’ve been asked about the font on my phone. I have 20/20 vision and yet the type-face on my screen makes it look like I am legally blind. I set up my phone this way on purpose. To avoid eye strain, and for the nosy people on the subway who would have trouble reading my texts over my shoulder otherwise… you’re welcome.

7. You Are A Walking WebMD

It was a while after I started getting migraines before I was officially diagnosed with chronic migraine disorder. When I first started experiencing excruciating head pain I wasn’t sure what was going on and I visited a number of different doctors and had lots of tests and scans done. It was scary. There was a lot of trial and error as I was prescribed different medications, and doctors used lots of terms I didn’t understand. I quickly learned the importance of research. Now before I take any medication I look it up and research the side effects, I read reviews and I make sure I know what I’m putting in my body. Before I see a doctor I look them up, I read reviews and I make sure I know who I’m entrusting with my care. When a doctor mentions a possible diagnosis I look it up, I familiarize myself with it and I learn what it means. I get second, sometimes third opinions. I receive newsletters from foundations and organizations that keep me up to date on the latest news and discoveries in migraine research so that I’m informed and can ask about certain treatments and findings with my doctors. No one is going to care more about your health and wellness other than you so it’s important to be proactive and stay informed when it comes to your health care.

6. Your Primary Physician Is Your Neurologist

I literally put down my neurologist as my primary care doctor when I fill out forms. What, like that’s weird?

5. You Have A Small Inner Circle

When your schedule is filled with more doctor appointments than social outings, you learn quickly who your friends are. When I was in high school I missed a lot of days because of my migraines and my once always-smiling, hyper self was replaced by a moodier, quieter, resting bitch face. I couldn’t wait to escape those halls and I almost didn’t because of the amount of days I had to miss. I had to bail on a lot of plans, but that’s okay because it taught me who my real friends were. I still have to cancel plans occasionally but because of the group I have surrounded myself with the only sense of guilt I ever feel is mainly my own. I know I’m not easy to be around or deal with when I am having an attack (or even on the days leading up to one or afterwards), but that is something I am constantly striving to improve upon. I’ve been through a lot more in my short lifetime than anyone should have to deal with and because of that sometimes I’m more reserved and slow to open up to new people, because those who don’t understand can be judgmental and honestly I don’t have time for that.

4. You Fake It Til You Make It

When your months are filled with more pain days than good days, you learn to cope and power through. I think I’m pretty good at faking it. Sometimes too good. After you realize how much you hurt the people around you when you can’t say the right thing, or when its time to adult and you can’t miss a day of work, you learn to compartmentalize and put on the act that you are well. The fact that this disease is an invisible one can sometimes lead to the stigma that you actually are faking the illness and not the fact that you are well. But make no mistake, its the wellness that’s being faked. The second that I’m able to I’m collapsing onto my bed, and shutting out the world until the next time I need to come out of my shell.

3. You Are A Professional Napper

If there was an Olympic sport in napping I would probably take home the gold. I have always struggled with some form of insomnia and I also have restless leg syndrome so it always takes me a really long time to fall asleep. Once when I was spending the weekend with friends, I got the nickname ‘Flounder’ because of the way I was flopping around in the bed unable to get comfortable. Lately, 5-10 mg of melatonin has been helping me before bed. Most of the time though, I am still exhausted when I wake up and I never feel fully rested. All of my medications list “fatigue” as a side effect. Napping is a great way to fight fatigue. In my opinion,  a nap is always a good idea.

2. You Run a Portable Pharmacy

I have learned the hard way to never be caught without medication on hand. In order to out-smart myself, I have strategically placed triptans and acetaminophen in every purse, bag, pouch, wallet, etc. that I own so that I never get stuck in a situation where I am without medication when a migraine strikes.

1. You Are A Warrior

I have been through hell and back but I’m still here. I’m fighting everyday against an invisible, misunderstood, debilitating disease along with 2-3 million others in the U.S. alone. Though I have to admit it has crossed my mind, giving up is not an option. Knowing you are not alone helps. Anyone who suffers from chronic pain is a fellow warrior and deserves credit for continuing to fight everyday.

10 Things I Would Do if I Didn’t Have a Migraine Condition

It’s often said that there is no point in looking at the what-ifs and the what-could-have-been’s, that it’s a waste of time and energy that could be better spent. Yet we all do it. It’s only human nature. There are days when I thank the cards I have been dealt for giving me my strength and others where I curse them for making me miserable. So today I am going to explore 10 things I would do if I didn’t have a migraine condition. As John Lennon sang, “You may say I’m a dreamer, but I’m not the only one”

10. Wear a Headband: I pride myself in being somewhat of a fashionista. I keep up with the trends, dare I say set a few of my own. . . but I will never willingly put pressure around my head no matter how cute it may look. I don’t care if it has an upper-east side preppy bow, a flower, a double band, if it’s hippy-chic, boho-fab, or if it’s a diamond encrusted tiara — in under 5 minutes I’m guaranteed to feel the stabbing pains of a pounding headache and no cute outfit can justify that. But a girl can dream. . .

 

9. Play Word with Friends: Okay, this is a silly one but wouldn’t it be great to just be normal and be able to play the games all the rest of my friends are playing? But mom…. all the cool kids are doing it!

8. Zumba: The latest fitness craze is taking the world by storm and I am eager to jump on board. You can’t survive a season of Dancing with the Stars without hearing about the amazing body transformations the casts go through, whether you watch the show or not. As an enthusiastic fan of the shimmy, it pains me to say that I can’t get through a high-intensity work out without getting a migraine. If I could, zumba would be the first class I’d take. Even the name is fun to say! Just imagine how fun the workout can be. I always wanted to be a dancer when I was younger, I was on the competition team and everything, pictured myself in Lincoln Center someday minus the whole psychotic black swan and the even scarier dance moms.

7.  Turn Up the Volume: I would love to be able to listen to my music as loud as I wanted whenever I wanted or to rock out and rave at a wild concert without a care in the world. I’ve been to quite a few concerts, but never a music festival or something long-term in fear of my not being able to last without getting a migraine. I love music, to the point that now I can’t even find an iPod that can fit all of my songs. I would love to be able to take a risk and enjoy it whenever, wherever.

6. Kickboxing: I bought a groupon for 4 kickboxing classes with my sister a few months ago. I was exciting more than anything to get the boxing gloves that we were promised with the coupon. . . and of course to take out some of my stress on the punching bag. I had no idea what I had gotten myself into. It was one of the most intense workouts I had ever experienced. There was some kicking and punching. . . but after an intense 20 minutes of conditioning drills. Needless to say, I left all 4 classes with enormous migraines. My sister signed up for a package and has been going back ever since. I envy her. Though it was one of the most challenging things I’ve ever done, and getting a migraine each time after was a downside to say the least, it was also extremely empowering. I couldn’t justify paying for and attending classes that would without a doubt induce a migraine, though.

5. Save My Pennies for a Rainy Day: Without having to pay for doctors, medications, my routine Starbucks every morning and all the other little specifics that go into preventing and getting rid of my migraines, I would have so much more money. I could possibly have a 401K. I would certainly have a larger savings account. I could travel. I could afford a puppy. Oh, the things I could do!

4.Drink Alcohol: Margarita Mondays with the girls, happy hour with the coworkers, partying into the wee hours of the night, a strawberry daiquiri on the beach. . . these are the things I am missing out on. I have accepted my lifestyle and have come to terms with my condition. I still manage to go out and have a social life most weekends. I try to stay optimistic and keep a positive outlook on whatever life has dealt me, especially since I know it could be a lot worse, but since this article is about wishing. . . boy, would I kill for a cocktail!

3. Become a Sun Goddess: I love the beach.  I love laying out until the sun turns me into a beautiful crispy golden nugget. I’m a Jersey Girl, insert stereotype here. But my days in the sun usually end in with a whopping migraine. I would love to be able to lay out for hours on end, my only worry being when high tide is, not whether I’m keeping hydrated or if the nearest shaded area is within  walking distance.

2. Have Kids: Migraines are genetic. I’ve heard it all my life. I have been to countless doctors over the span of my life and one of the first questions I always get asked is, “Is there a history of migraines in your family?” And no doctor has yet to believe me when I say no. Both my parents claim it must be the other’s side of the family. It’s become a running joke. I’ve heard the statistics: if you have migraines your child has a 50% chance of having them too. Even more so if it’s a girl. That scares me. I don’t want to bring a child into this world and put them through the pain I have endured and I’ve thought about this a lot. I’m still young and my feelings on the subject could change, and there’s always other options like adoption. Though I also don’t know how great of a mother I’ll be if I’m getting headaches all the time. But I know plenty of women have done it and I have a great deal of respect for those women. These are just the thoughts that keep me up some nights. Regardless, if I never had any migraines, I think my outlook on parenthood would definitely change. Either way, lots of puppies are definitely in my future.

1. Smile More:  Having migraines causes your nasty, evil, angry, depressed twin to come out and play wreaking havoc on anyone in your path. It helps to have an understanding, empathetic and loving inner circle. But even then there’s so much you can expect them to put up with. I try to be conscious of how those around me are affected by my condition, though it’s not an easy task. If I never had a migraine, I would be a much better daughter, sister and friend.