Patience is A Virtue

Growing up we are told to “be patient.” Starting from when we were just little ones, we would hear “be patient” from our parents as we relentlessly tugged on their clothes to get their attention. As adolescents, we would beg for the newest thing to keep up with the trends and fit in with our friends. “Be patient,” our parents nagged.  As adults, we want our dream job right out of college, we want to own our own house as soon as we can, and we yearn for our fairytale relationship that we so envy in other people. “Be patient,” we hear from all directions. In an environment where everything is so rushed, it’s hard to practice that particular advice that we’ve been given since day one.

 

Patience is a weakness of mine. I’m notoriously impatient, actually. I have a bad habit of interrupting people when they talk, I sing lyrics to songs two seconds too early and I get so antsy waiting in lines that sometimes it physically pains me. But where I’ve been most impatient, lately, is with my health. I’ve been going through another bad spell–headaches pounding when I wake up that, more often than not, get worse as the day goes on. Leaving me frustrated and pouting, or pushing myself past my limits and making the pain worse.

 

I’ve made a lot of changes in my life recently, though, so I know there are multiple factors to consider when trying to figure out why my headaches have taken a turn for the worse again. I moved into a new house, I was on and off my Vyvanse for my narcolepsy, the season is changing, my allergies are kicking in, the list goes on and on.

 

But instead of being patient and taking it day by day, I’ve been jumping to conclusions quicker than most. I have been automatically assuming that it’s my house that’s making my head worse. Or that my chiropractic and botox treatments are no longer working. I always assume that I’ve figured it all out and that I’ll just never feel better.

 

Take it from me, it does NOT help to be impatient in this way. Well, it really doesn’t help to be impatient in any way, but you get the point.

 

For me, and others who have multiple chronic illnesses, it’s so important to remind ourselves that there are so many different factors at play when it comes to our symptoms. It’s never just one thing for me that is causing my symptoms to flare up badly. My headaches are affected by countless factors: for example, humidity, allergies, the heat, my environment, how tired I am, exercise, stress, anxiety, etc., etc. It’s more often than not, a combination of a variety of things. Which makes it very hard to pinpoint what is causing the flare. Which is why my impatience usually kicks in full gear–because I can’t pinpoint a reason and therefore cannot see an end to the flare in any foreseeable future.

 

So here’s where I tell you the words that you’ve been hearing since day one: Be patient. Take it day by day, literally. Each day is a new day with the possibility that something may change–some things may get better. But the fact is, we won’t know until that new day comes. So take a deep breath, and be patient.  

Be joyful in hope, patient in affliction, faithful in prayers.

-Romans 12:12

Vote for The Headache Heroine in the 2017 WEGO Health Awards!

I’m so happy, humbled and honored to say that I’ve been nominated again this year for the 6th Annual WEGO Health Awards!!

 

Last year I was nominated and became a finalist in three different categories. It was such a cool experience and I got to speak with so many wonderful patient leaders.

This year, I’ve been nominated in two categories: Best in show: Instagram and Best in Show: Twitter! I would very very much appreciate your votes! You can visit my nominee profile here and you can vote once for each category! Just click the endorse button below my page 🙂

Thank you so much for your love and support ❤

 

Do Only What You Can Do Today to Create The Reality You Want for Yourself Tomorrow.

 

I have a very hard time accepting my own reality. I’m sure many people experience that every once in awhile. Like when you were younger and you were grounded but you really wanted to go to that party, so you convinced yourself that you weren’t grounded and you went anyways, only to get into more trouble. It probably would’ve been better to just stay home, accept your punishment and wait for the next party. Or like when you know you have a million things on your to-do list, but you still go out and grab drinks with your friends or binge watch all of the real housewives episodes, only to then stress yourself out even more knowing you achieved nothing. We would be so much better off if we just accepted our reality as it is in that present moment, rather than pretend we are living some alternate reality that we daydream about.

 

Currently, I wish that I could be more physically active than I know I can be. I listen to friends talk about their workout routine and how they’re losing weight and growing stronger and more confident. I’m happy for them. I am. And after the few minutes of acting like Eeyore knowing that my body can’t do all of the the things that theirs can, I then convince myself that I actually can do what they’re doing. Why should my life be any different? They all face difficulties themselves. They pull muscles, tear ACLs, herniate a disc, etc and they all end up recovering and getting back into their exercises weeks or months later. So what’s stopping me from doing the same?

 

This is when I need a pretend slap in the face to wake myself up to my reality and the fact that my reality is not anyone else’s reality. My headaches intensify not only when I lift weights, or run or do yoga, but simply even when I walk up stairs, bend over, or push furniture around. My exertion headaches have no mercy on activity level. It’s something I’ve been dealing with since I was a teenager. I half expected them to be gone by now, but again, I was only kidding myself, right?

 

While I know I can’t squat big weight or run on the treadmill in order to lose weight and gain muscle quickly like “normies,” I do know that I can do just what I am capable of and no more. I have learned to endure the headaches throughout a workout and stop myself when the headaches grow to be more than I can handle. (It helps that I can handle more than someone else may due to the longevity of my illness.) Each day I have to remind myself that my routine will be very different than anyone else’s. I am unique and that’s ok. I won’t be as physically fit as I dream of, but I can do what I can to get close to that dream. I’m learning to accept my body and it’s limitations, but it’s something I have to remind myself of and teach myself daily.

 

So, just today, I’ve created a workout plan for myself. Two days of weights (more reps, less weight-in order to keep the impact low), three days of yoga (check out Yoga With Adriene, she’s awesome!) and two days of rest. Now, I know that this is an ideal plan. I know that my illnesses will throw curveballs at me and that there’s no way I will be able to stick to this routine as strictly as another person may be able to. I’m bound to have a migraine or narcolepsy spell come in and make me miss a day or two. It’s inevitable. I can’t control that. What I can control is how I accept the fact that I can make a routine, stick to it as best I can, not push my body more than I need to, and be cognizant of the fact that there will be days when my illness throws my schedule out of whack.

 

We have to learn to accept our realities as just that–our realities. We can’t compare ours to anyone else’s, just as someone else shouldn’t compare their reality to ours. We must constantly adapt, though the frustrations will want us to do otherwise.

June is Migraine & Headache Awareness Month!

June is Migraine & Headache Awareness Month! This month is dedicated to advocating for patients like myself who suffer from an invisible illness that is much more debilitating, physically and emotionally, than most people know.

I’ve lived with migraines & exertional headaches for a little over 10 years now. They have changed the way I live my life entirely. I had to stop playing sports, start avoiding the hot/humid weather, try to accept that I can’t live as active a lifestyle as I wish and overall adapt to the diagnosis.

I’ve lived with chronic daily headaches (meaning no days with a “0” pain level) for around 3-4 years now. This has had a much bigger impact on my life than my migraines, because while my migraines are extremely painful, they only happen on occasion. These chronic daily headaches have become my new norm–they’re like my shadow, always there. The only time I don’t feel them is when I’m sleeping. My chronic daily headaches have resulted in many mental health ups and downs, anxiety, relationship/friendship strains, tons of forced FOMO, many days at home missing the fun, etc.

But this is not meant to be a sob story post. Instead, this is meant to be a post that opens peoples eyes to the debilitating nature of migraine and headache disorders. There is an urgent need to increase awareness of the impact migraines and headaches have on a person’s quality of life. Let’s spend this month (and every month after) shining a light on these disorders and advocating for everyone who deals with them.

“You’re so plucky, I love it!”


A few weeks ago someone said to me, “You’re so plucky, I love it!” And I had to google what the word meant since I didn’t know 🙈
That being said… ☝🏼it’s one of my new favorite words and after learning the meaning, I took what she said as such a compliment. It’s a word I’m sure many people who deal with chronic/invisible illnesses would be proud to be described as.

2017 Migraine World Summit–The Event of the Year!

Last year, I was so fortunate to receive an email making me aware of an online event called the Migraine World Summit. I didn’t know what it entailed and I wasn’t sure what to expect, all I knew was that world known doctors would be interviewed about migraines, headaches and everything that comes along with them. So I immediately signed up to participate!

There was so much information being talked about–and there was a week of interviews that were available for me to watch! Best part? I was able to participate and watch straight from my bed. Score.

This year, ‘m volunteering for this international event that is going to bring thousands and thousands of participants. I can’t wait to hear what the people interviewing have to say! BTW, some of the people being interviewed include leading experts and doctors from the National Headache Foundation and the American Migraine Association. Sooooo yeah, that’s pretty awesome.

The event begins next week, April 23rd!! Make sure to check out the website here: https://www.migraineworldsummit.com/ and register for the event! I promise you will learn very valuable information and perspective on the migraines and headaches that you’ve been battling day in and day out.

Chronic Illness and Relationships

No couple is immune to the hard work that goes into their relationship. Each couple has their own unique obstacles that they have to overcome, their own speed bumps to get over and their own challenges. Each relationship is unique. Relationships that involve someone with a medical condition such as an invisible/chronic illness, present a whole new category of challenges and obstacles.

 

Since I was about 12 years old I’ve battle migraines.Then a couple of years ago my chronic daily headaches developed. Two years ago I developed an anaphylactic food allergy. In the last few months I’ve been diagnosed with hypermobility ehlers-danlos and mild postural orthostatic tachycardia syndrome. You can probably assume that I don’t lead the same type of lifestyle that most normal “healthy” young adults do. These health issues present a number of challenges that would take up a whole page to list them out. But one that other people may not think about is the challenge of dating as someone with a chronic illness and/or condition.

 

It wasn’t often that I opened myself up to someone. And there was always an underlying reason that I often tried to downplay–which was I didn’t want to try to explain my headaches to someone else. It’s a challenge in itself to get someone to even remotely understand what I feel like every day. Which makes sense–you can’t really understand someone else’s physical pain–but it is such an overwhelming and anxiety inducing thought just thinking about explaining it to someone else and trying to help them make sense of it. So I just avoided it.

 

What I’ve found, though, is that with the right person it may still be difficult to explain and express to them how you feel with your chronic illness, but it will become much easier over time and the burden of having to explain over and over will be lifted.

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I have been lucky enough to be in a relationship with someone who, even though he may not be able to understand my daily physical pain, tries his hardest to do so and is there for me every step of the way. Dating as someone with a chronic illness means you look for someone who will stick by you when you’re at your worst. He has laid beside me when my migraines have been so awful that it hurt to talk and think. He has rubbed my back while I lay curled in my bed. He’s rushed me to the ER and rushed himself to the ER when I found myself there without him. He’s held my hand through countless IV’s and needles. But not only has he seen me at my worst physically, he’s seen me at my worst emotionally. He’s been by my side when the unpredictable blues hit and I lay fetal position in my bed crying due to frustration, pain, anxiety and disappointment.

 

You can imagine that being seen in such states can make you feel incredibly vulnerable. I feel fragile, broken and completely exposed. It took me a while to show that part of myself to him, but even now, I have a hard time expressing everything that I’m feeling. It’s hard to be as vulnerable as that and not feel guilty about it. Showing that much vulnerability can make your partner sad because they see with their eyes how much you are hurting. It’s not fun for them either. Which is why I try my best to hide it sometimes, even when I know I shouldn’t.

 

Even though i’m the one who is in constant physical pain, it takes a toll on him as well. It takes a toll on our relationship at times.

 

Once or twice the words “go on a break” have been tossed around before and we have found ourselves facing crossroads of our relationship. It’s no surprise that there is a certain amount pressure put on a person who is dating someone with a chronic illness to be stronger, more reliable and more flexible than a person who is dating someone “normal.” I’ve been stubborn and told him he should date someone normal because it would relieve him of this unnecessary and burdening pressure and frustration that he inevitably faces by dating me. I have become short and impatient because I was telling myself that he should be with someone easier and healthier, which results in him growing fearful and frustrated as well.

 

By living a life with chronic illness, I’ve gained a lot of insight I never expected to. One major thing that I’ve learned about being in relationship as a person with a chronic illness, is that we must give back. Love is a two way street. Our partners constantly give and give and give to help us out when we are feeling at our worst. And it can be easy to let it slip our minds, especially when we aren’t feeling well, that they are putting out so much effort to make us feel better. We end up taking and taking and not giving anything back in return.

 

We have to be mindful and remember to give back. Be outwardly and openly thankful. Be verbal about it but also show it through actions and do something small (or grand) every once in a while to show your partner just how grateful you are. Surprise them with thoughtful gifts, write them notes, tell them how much you love them every day, take part in their interests, cook for them when you’re feeling well, help them in ways they may not feel comfortable asking for just as they do for you.

 

There are numerous challenges that we face when we live with a chronic illness. Being a part of a relationship is one of those challenges that bring about many challenges of its own. But if you can make it through the hardships that chronic illness throws your way, you can make it through any of the other relationship speed bumps you may come across.

 

“How To Live Well With Chronic Pain and Illness” Chapter 14: When The Blues Come Calling

There are many days where I get the blues. Most of the time, it’s due to the limitations and frustrations that my headaches have caused. There’s no way for me to pinpoint what gets the blues going. There’s no moment that I can recall setting them off. They just happen. One moment, I’m energetic and laughing, the next I feel like I can’t physically move from my bed.
This chapter of “How To Live Well With Chronic Pain and Illness” is all about getting the blues when you live with a chronic medical condition.

*I skipped a couple of chapters, because this chapter is very powerful, I believe.

This chapter discusses some things the author believes can help with your blues.

  1. Avoid “comparing mind.” It’s easy to believe that we are the only ones who get the blues. Our friendly neighbor across the street seems to always be cheery. Our friend who has the perfect job and relationship seems to have it all. Etc, etc. But that’s not the case. Everyone is subject to illness, hurt and struggle. You are not alone.
  2. Treat the blues with friendliness and compassion Even if we aren’t physically alone on the days when we get the blues, the blues can often make us feel as though we are completely isolated. I feel this way normally when I get the blues. By trying to convince yourself that you shouldn’t feel that way, you are only hurting yourself. Lend yourself some compassion. You are allowed to feel this melancholy way.
  3. Change the environment–physical or mental. Sometimes you need to just get out of the space you are in. Go for a walk outside, go for a drive, sit in a local coffee shop. Somewhere new. Somewhat recently on a day that I had the blues, my boyfriend took me on a long drive on a fall evening. I don’t know how to describe it, but it worked–it pulled me out of my blues and that one little change of scenery had a larger impact on me than I imagined. It was difficult to get myself out of bed and into the car, but 5 or so minutes into the drive I was really happy that I did. You can also change your mental environment. Do something creative–I like to write and sketch. It pulls my mind in a different direction and gives me the outlet that I need.
  4. Remember that the blues are impermanent. Moods and emotions are unpredictable and always changing. Even though it may seem muggy and gray right now, tomorrow may bring about brighter days with happier times. Just like the weather, they will change.
Note here: “the ‘blues’ is to be distinguished from a heavy or dark mood that goes unchanged for weeks at a time and interferes with work or personal relationships. The latter could be a sign of clinical depression, in which case you should consider seeking advice of a health care practitioner.”

 

“How To Live Well With Chronic Pain and Illness” Chapter 8 Summary: “The Many Benefits of Patience”

Chapter 8 of “How To Live Well With Chronic Pain and Illness” outlines the many benefits of patience when it comes to living a life with chronic pain and/or illness. We are patients. And we need to be patient. This word patient is such a commonly used word in our life’s dictionary.

Everyone loses their patience–maybe traffic is bad and you just want to get home; maybe the wait time at the doctor’s office is unbearable and you can’t stop glancing at the clock while sighing; maybe today just isn’t your day.

One hard truth about life: sometimes, it just doesn’t go your way. But the author puts this fact into perspective for us a bit in this chapter. She says that “it’s not the fact that we don’t get our way that makes us miserable; it’s how we respond to that fact. The question becomes, do we get angry and upset, or do we tolerate and accept whatever’s happening that we don’t like?”

The author notes that by practicing patience in her life, she has noticed two things:
1) being patient is a way of treating yourself with compassion
2) being patient gave rise to equanimity–the even-tempered, peaceful state of mind that accepts with kind understanding that our lives will not always conform to our preferences.

The author then outlines her four-step approach for working with stressful and painful emotions. See below:
1) Recognize it: Recognize that impatience has arisen
She goes on to talk about how we often tend to think that the environment around us should conform to our expectations (ex: no traffic jams, no long lines, etc.) ; we tend to think that people should conform to our expectations (ex:they should behave the way we think they should) **I am very guilty of this** ; our expectations are often unrealistic when it comes to mastering new skills ; our expectations are almost always unrealistic when it comes to what goes on in our minds.

She suggests trying to come up with specific examples from our own lives that we can fit under these categories, which in turn will help us recognize that we are responding with impatience.
2) Label it: Label impatience when it is present in your mind
Try investigating your emotions from an objective point of view. It’s easy to place judgement on ourselves for how we’re feeling, but that isn’t fair nor compassionate to ourselves.
3) Investigate it: Investigate how impatience feels in your mind and in your body
Try to pay attention to how you feel when you’re impatient–is your body relaxed or tensed, is your mind calm or anxious?
4)Let it be
“Calmly accept the presence of impatience knowing that, with time, conditions will change..and so will my mind”

It’s the peace of mind that comes with accepting, without aversion, that delays, difficulties, and annoyances will inevitably be among life’s experiences.