Vulnerability and Authenticity with Chronic Illness

What makes you vulnerable makes you beautiful…there’s a word for it: authentic

Vulnerability is a scary thing. We don’t want to look weak. We don’t want people to pity us or judge us. We know we can’t be perfect, but we don’t want to seem too imperfect. So often, we think our imperfections are our flaws. However, we shouldn’t confuse the two or make them interchangeable. Because our imperfections are what make us unique.

When you have a chronic illness, you experience a whole lot of vulnerability. Your parents become your at home nurses, your friends have to run errands for you because you can’t physically get out of bed, your partner sees you cry out of pain and frustration or curled up in the fetal position because any other position is too painful. These are all vulnerabilities that we can hide from the outside world, though.

It’s one thing to be vulnerable with the people who care about you and love you – it’s a totally new ballgame when you show your vulnerability to strangers!

But, spoiler alert – you are human. Every single person you pass on the street is self-conscious about something. Every single person has an imperfection (or lets be real, imperfections). But not everybody shares theirs  and because of that, someone else who may have a similar imperfection feels alone or isolated because they think they’re the only ones like them. They may end up confusing imperfections with flaws and look upon their own imperfections with a negative mindset.

I know it’s hard to share our stories and our vulnerabilities because we think whoever we’re sharing them with may judge us. As humans, we sometimes judge another person or their situation simply because we are unfamiliar with or can’t relate to them or their situation. But, that’s not fair, is it?

I can raise my hand and say that I am still working on sharing my story and my health journey with not only strangers, but sometimes friends, because I’m worried they’ll look at me funny, or think I’m strange or think I’m over exaggerating my pain & symptoms. So, most of the time, I turn to writing because it’s personal and I don’t have to show it to anyone else.

writing in DC

But recently, I’ve been trying to really open up to my own vulnerabilities and show all aspects of my journey without hesitation or reservations. And I urge you to do the same.

Share your journey with others. Give the world a window into the unique person you are. No one else shares your story, but I promise you that someone else can relate to your story. By being vulnerable and showing that vulnerability to the outside world, you could be helping someone else just like you. And, honestly, you’ll end up helping yourself most of all.

November Intentions: Grace and Gratitude

Hello November!

Setting monthly intentions has quickly become one of my favorite mindfulness practices. It’s a way to set goals for myself and a way to remind myself of the mindset I want to live in. I’ve started placing my intentions on my dresser so that I have to look at them every single day. This way, I’m not just writing the intentions to write them – I’m writing them so that I can really live them out.

With that said, here are my intentions for this month:

  1. Start each day by asking for grace
    For the past week or so, I have made it a point to start each day by asking God to pour out his grace on me so that I can face the day ahead of me and whatever it will bring along with it – good or bad. And I have noticed a difference in my mindset throughout those days. Sometimes I have to remind myself to do this – I like to compare myself to an athlete in training – training myself to pray consistently in the morning. Someone said something to me recently that really struck me – she said we can compare ourselves to cars and grace being our fuel. We can’t ask for grace once and expect it to last. We have to refuel, and ask for grace each day. So, I try to start my days by filling up on grace to get myself through the day. If praying isn’t your cup of tea, maybe you start your day by meditating for five minutes, or writing down your intentions for that day, or taking five deep breathes and silently tell yourself “I got this. I will conquer today. I will be patient through any obstacle that comes my way today, because I am strong enough to overcome anything.”
  2. Write three letters to people in my life (and continue this each month here after)
    One of my hobbies is creating handmade cards. I like the creative aspect of it and I like giving them to people and seeing their reactions. I like putting a smile on people’s faces whether it’s for their birthday, a holiday, a celebration or just because they’re super awesome and deserve a little extra love that day. Also, a lot of my family & friends don’t live in the same city as me. So, I’m going to use this hobby to fuel my creative tank and also to keep in better touch with the people I love and care about.
  3. Continue networking and saying yes to new opportunities
    In the past few months I have tried to put myself out there in a number of ways – I attended a BlogHer conference in NYC by myself where I knew zero people; I have attended events that people I don’t know very well have invited me to, where I knew I would know only that one person there; I’ve reached out to different chronic illness support groups as well as other advocates and influencers. I love meeting new people and learning their stories. I love sharing knowledge with and gaining knowledge from knew people. Everyone has something to teach us, so why not ask? I’ve also learned that I have had some of my best times at events and things that I wasn’t originally looking forward to that much or that I was really nervous to go to. Put yourself outside of your comfort zone. Do something new. Explore a new city. Try a new hobby. Say hi to that stranger sitting next to you. You never know where it could take you.
  4. End each day with a grateful heart
    This is the season of giving thanks – but that doesn’t mean we should only be giving thanks during this one month. A couple of months ago, I created a new habit that I know I’m going to stick with. Each night before bed, I write down the things I am especially grateful for that day and I then write down ways in which I can improve (physically, emotionally and spiritually) the next day. It’s such an eye-opening way to see that we have so much to be thankful for. There are so many people who care about you. There is joy in the little things. And there is always room for improvement.

Have you set any intentions for November? What are you most grateful for right now? How do you wish to improve in the next month?

November intentions

Chronic Illness in College

This weekend I was in Southwest Virginia in a town called Blacksburg, Virginia where I spent four wonderful years going to college at Virginia Tech before graduating in 2015. I have family who currently lives in Blacksburg, family who grew up in Blacksburg and family who also previously attended and some who currently attend Virginia Tech.

Basically, Blacksburg is my second home.

Virginia Tech football

While I was there I experienced overwhelming nostalgia for my college years – having little responsibilities, living down the street from all of my closest friends, waking up & going to bed whenever I wanted, etc. However, my time in college was different from my peers in one particular way: I went through college dealing with chronic illness.

I had to adapt in certain ways my peers did not have to. Some nights I didn’t feel well enough to go out, sometimes my migraines sent me home early from football games, I usually had to skip out on hikes or long outdoor activities, sometimes I fell asleep in class even when I tried my hardest to stay awake (thanks, narcolepsy) and so many other situations during which I had to adapt to or avoid because of my chronic illness.

But the key word here is adapt.

I want to share some of my tips & tricks for adapting to college life when you have a chronic illness. I hope these can in some way help students who are preparing for college or who are currently in college who need someone to just understand for once.

For Classes

  • Speak with your professors at the start of the semester/year.
    • It’s important for them to know that sometimes things come up unexpectedly (like the surprise migraine) and if you speak with professors early on, you can work together on a plan for if that occasion arises. Your professors want you to succeed!
  • Sign up for classes, when you can, that have online lectures available.
    • If you can’t make it to the in-person lecture, maybe they have an online version you can watch so that you don’t fall behind
  • Schedule classes so that you have breaks in-between.
    • You may need time to rest in-between or extra time to get to class from class.
  • Don’t pull all-nighters.
    • They aren’t worth it!
    • Often times, when we deprive ourselves of sleep, it makes the pain so much worse and longer-lasting.
  • Schedule classes during times that are best for you
    • If you have narcolepsy like me, early morning classes are near impossible.

For Leisure & Student Life

  • Make migraine kits – one for at home, one to keep in your backpack
    • It’s always important to keep things like extra meds, water bottles, etc. in your backpack so that if your symptoms get worse while you are on campus, you are prepared.
    • Don’t underestimate the value of things like a sleeping mask & ear plugs (for if your roommates are having people over but all you want to do is sleep) or things like bedside meds (for when the pain is too bad and the thought of getting up to go across the room to find your meds is totally out of the question.)
  • Don’t try to over do it
    • If you know the long trek across campus will cause your symptoms to flare, catch a bus, call an uber, ask a friend to drop you off. It’s OK to need assistance.
    • If you know that drinking or socializing will push you over the edge because your pain is already creeping up on you, listen to your body! Don’t overdo it.
  • Keep some of your favorite movies & shows queued up on Netflix, always have snacks in the house & buy some comfy pillows & PJs
    • Some nights you will have to stay home when your friends are out. Make sure you have the necessities for a perfect movie night in or a successful self-care evening. This will distract you and also help you take care of yourself.
  • Plan a night in – your friends will understand that sometimes it’s too much for you to go out and if they’re your good friends, they will enjoy just spending time with you! Plan a game night, movie night, etc. for a Friday – the perfect activity after week of classes & studying.

But most of all, have compassion for yourself. It’s OK to need a little more help than others or do get things done at a slower pace or to need different adaptions & exceptions than those around you. College is a time for learning not only on an academic level, but on a personal level. You are learning more about yourself in those four years than you can imagine. Have fun. Be present. Enjoy yourself. There’s no other time like it.

When Sleep Disorders Go Unnoticed

An estimated 50 to 70 million Americans chronically suffer from a sleep or circadian-related condition (Project-Sleep). And it turns out I am one of those people. However many sleep disorders go undiagnosed or unnoticed simply because people don’t realize they have them. I was one of those people for so many years of my life. I wasn’t diagnosed with narcolepsy (without cataplexy)until the winter of 2015. But I was having symptoms, that I can remember, for several years prior to that.

Growing up, I was that teenager that slept until noon and had to have my parents force me to wake up, get out of bed and do something productive with my day. Yes, many teenagers sleep until noon. I mean why wouldn’t they? They have no responsibilities.

giphy1

And yes, sometimes I would go to bed much later than socially acceptable at that age, leading me to sleep until noon. But, sometimes I would go to bed at 10 pm and still was able to snooze and snooze until also much later than socially acceptable. I never thought anything of it, though. But I had created a reputation for myself in my family as the girl who sleeps the day away. I tried hard not to carry that reputation over into school, but alas, it happened. In my senior year government class, for example, there was one time where I fell asleep (in the front row, mind you) and hadn’t realized I fell asleep until my sleep talking woke me up. I sat in the middle of two girls who looked at me and kindly said while pretending they weren’t extremely confused, “Are you ok? Were you sleeping?” See, it wasn’t normal to sleep that much during school. It really wasn’t the cool thing to do.

When I went off to college, I realized that I could nap whenever I wanted and wouldn’t have my parents waking me up every 5 minutes telling me to get up and sweep the kitchen or some cliche chore that they made you do just so you were doing something. So when I went to college I was like…wait I can nap in freedom? Whenever? That’s the American dream! And as a true patriot, I lived out that dream. But, I never realized that I napped a lot more than some of my other friends did. I napped through some evening classes and didn’t care because my body was so tired.

There are many stories from my college years that I realize now were not normal….Yes, sometimes students fall asleep in class (late nights doing absolutely nothing with your friends or alcohol often caused this), but not as often as I did, it seemed. The looks I would get from my roommates and friends when I either slept in past my class or when I told them how I kept falling asleep in class, that look is definitely a judgmental one even when they act like they aren’t judging you. It ain’t a good face.

giphy2

One time during my freshman year econ class, I apparently fell asleep. I say apparently because I didn’t realize it until I jerked awake suddenly (are you noticing a pattern here?) I looked at my two friends sitting next to me and said “why didn’t you wake me up?” And they said “because you were snoring, but like a cute snore. We didn’t want to wake you.”

I also specifically remember my senior year, trying so hard to force myself to stay awake during my Communications Law class. And this wasn’t because the thrilling content of comm law didn’t have me on the edge of my seat and it wasn’t because of a lack of effort to pay attention on my part. I remember after a few classes of dozing off in the back of the room, that I made an effort to move to the front row. I told myself if I sit in the front, there’s no way I can’t pay attention therefore I would stay awake. Sit in front + pay attention = stay awake. Basic math, right? Well I was never good at math. I had to force my eyes to stay open. It was painful, honestly. Like, physically painful because my eyes would be so incredibly heavy and I had to actively out effort into making sure they didn’t close right in front of my professor. And the thing is, this class was my first class of the day, and it was at 2 pm. So it’s not like I was waking up at 6 am for an early class. I was easily getting 9-10 hours of sleep each night, if not sometimes more than that. So I was getting enough sleep, I was making full effort to pay attention in class, yet I still struggled to stay awake.

giphy3

After graduation and convincing myself that the college life was the cause of my exhaustion, I got my first full time job. It was during training one day where I was literally dozing off while a colleague was training me that I realized this was a problem. But yet, I didn’t realize it was a problem that could be diagnosed. And I wasn’t sure how to solve my problem. I also had other health issues to focus on so my sleepiness took a backseat.

Actually, the only reason I got the diagnosis for narcolepsy was due that other health issue I had: my chronic daily headaches. The PA I had been seeing for a couple of years who had been with me through each treatment that I had tried and that had failed me, suggested I do a sleep study to see if I had sleep apnea (since I consistently wake up with headaches, she thought maybe I wasn’t getting enough oxygen during the night.) After the sleep study, my PA pointed out to me that I didn’t have sleep apnea, but surprisingly enough, I had narcolepsy w/o cataplexy. She explained that even though this was not expected, it was actually good to see test results that didn’t show as “normal” because i finally had some answers. I finally had reasons for all of the above scenarios. I had a reason for falling asleep during classes, for sleeping in until noon and for dozing off during a full time job. I finally understood why.

It’s extremely frustrating to feel symptoms and have no idea why they’re happening and have nothing to connect them back to. And to be honest, I was completely ignorant to sleep disorders in general and it never even crossed my mind that I might have been living with one. If it weren’t for my PA suggesting that sleep study, I’m not sure when I would have found out I had narcolepsy. Perhaps I still wouldn’t know today.


The message here is that it’s so important to learn the signs of sleep disorders, because sleep disorders are invisible and difficult to detect. Sleep health is much more important and impacts our overall health more than most people realize.

Take a look at this website, Project Sleep, to learn more about sleep conditions/disorders, how to detect symptoms, and what to do if you think you may have a sleep condition/disorder!

 

Disclaimer: The Headache Heroine website and blog does not provide medical advice, diagnosis or treatment.
Content from this website and blog is not intended to be used for medical diagnosis or treatment.  The information provided on this website is intended for general consumer understanding and entertainment only.  The information provided is not intended to be a substitute for professional medical advice. Please consult a medical professional for professional and medical advice.

2017 WEGO Health Awards–Vote for The Headache Heroine!

I am excited to share (even though I may have already initially shared) that I have been nominated for the WEGO Health Award in the 6th Annual WEGO Health Awards! Last year I was nominated for three categories and a finalist in two. This year, I’ve been nominated for two categories: Best in Show: Instagram  and Best in Show: Twitter.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.

Being nominated means that I have in some way, shape or form helped another person like myself–someone who struggles with health issues and who may have at one point felt or still feels totally alone in their journey. I’m so glad that I can use my experience to empower others to feel empowered.

I’m looking to you, my incredibly supportive network, to help endorse me for this award.

Click here to be taken to my WEGO Health Awards profile and click “Endorse” under my nominee photo. You can vote twice–once for each category that I have been nominated in!

If you’ve ever felt touched by something I’ve written and shared, if I’ve ever made you laugh or inspired you to keep fighting–please consider endorsing me for this award!

Thanks fam 🙂

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.

“How To Live Well With Chronic Pain and Illness” Chapter 7 Summary: “Dealing with Tough Choice after Tough Choice”

When you live with chronic illness or pain, you find yourself constantly trying to manage your health as our relationships with others as skillfully and as well as we can. Based  on our evaluations of how we are managing both of those parts of our lives, we have to make choices that will most be the most beneficial. This leads to tough choice after tough choice. Do we keep the plans we made or listen to your body and stay home? Do we let down our friends or our bodies?

Start where you are. Use what you have. Do what you can.

-Arthur Ashe

 

In this chapter, the author writes out some tough choices/questions that we have probably all found ourselves facing at some point during our lives with chronic illness/pain. See below:

  • “Do we talk openly about our health problems, or do we keep them private?”
    • This is a choice I find myself facing nearly every day. When I interact with strangers or with people whom I know I won’t be seeing often, I find myself wondering if I should even bother trying to explain my symptoms and health conditions. Sometimes I feel like I have to explain myself or the person/people I’m talking to will think I’m weird, or lazy, or boring, etc. But then other times, I feel like I shouldn’t have to explain to someone who may just be a temporary character in my story. The best thing we can do for ourselves in this dilemma, is read the situation and circumstance and do what we feel will be the most beneficial and compassionate for us–not for anyone else.
  • “Do we follow our doctor’s treatment plan, or do we try alternate therapies?”
    • This question frequents my mind much more often than I would like it to. So often I find myself going back and forth on whether I want to try a new treatment that my doctor has suggested. For years, none of the medicines I was being told to take worked. None of them. Countless pills and nothing to show for it. So I am skeptical. However, there are some treatments that my doctors have suggested that have proved to be beneficial and have provided me with even the littlest relief (any relief is a win). So I am hopeful.
  • “Do we ignore a new or worsening symptom, or do we have it checked out by a doctor?”
    • I can not tell you how often I have asked myself this question. You can ask my family members and my boyfriend–they won’t be able to remember either because it’s a substantial number that keeps growing. I find myself so much more in tune with my body than most people. While this can be beneficial, it can be extremely tormenting. It is exhausting to waste so much emotional efforts focusing on every single ache, twinge, or pain that is felt in our bodies. Trust me–I do it every day. However, no one knows your body as well as you do. There have been times that I have gone to the ER over a symptom that ended up being nothing to worry about. However, there have also been times where I have brought up symptoms to doctors and it has helped get me steps closer to treatments that actually work for my body. All you can do, is listen to your body as carefully as you can. You are the expert on your body. You know it best.
  • “Do we use makeup and the like to cover up how sick we are or how much pain we’re in, or do we let people see how we really feel?”
    • This is a question that I often answer too quickly–and most of the time, my answer is to hide how much pain I am really feeling. The author said something in this paragraph that stuck with me real hard. She said “Health people tend to assume it’s all or nothing: people are either sick or they’re not; they’re either in pain or they’re not. As a result, if they see us doing anything ‘normal,’ they assume we’re 100% well.” I mean this is an every single day occurrence for me. I’ve lived through thousands of interactions where someone has said to me “oh you have a headache today? I’m so sorry.” Well…I actually have a headache every single day, it’s just some days they are worse and more painful than other days. It’s not their fault, I know. But it’s extremely difficult to always remind people of my constant pain. So, most days, I just hide how I’m feeling. People are not deliberately insensitive to our pain though. They just simply don’t know.

The author ends this chapter by talking about how physically and mentally exhausting it is for us to have to  continually “assess, evaluate, and choose a course of action while already struggling with chronic illness.” and she couldn’t be more accurate. Pay attention to your body and you will find the answers to your choices come much more easily.

Things I’m Good At, Thanks To My Chronic Headaches & Narcolepsy

 

I’m really good at:

  1. Sleeping. My spirit animal is sloth.
  2. Making plans and then backing out last minute. Just because I hate doing it, doesn’t change the fact that I’m awesome at it.
  3. Collecting. I collect prescriptions, vitamins, test results, and doctor business cards
  4. Talking. About anything–doesn’t have to be health related. I’m just really good at talking.
  5. Showing compassion. Having endured years of chronic pain, health issues, emotional roller coaster rides, mental hardships and more, I find it really easy to feel compassion for other people and their journeys and struggles. I also just really like seeing people smile, so that’s more motivation.
  6. Surprising people. With my unexpected knowledge of various medicines, methods, symptoms and diagnoses. I promise I won’t walk in and pretend to be your doctor though.
  7. Enjoying time by myself. Because of how often I have to cancel plans or stay in and rest, I’ve learned how to truly enjoy and appreciate my own company. It actually kinda confuses me when people say they don’t like spending time alone. Like–I think I’m super cool, why wouldn’t I want to hangout with me?
  8. Picking myself up after a fall. More often than not, I’m the only one who can get myself up again after I’ve taken a hard fall in my health journey. Everyone will fall down in life, but we only truly live when we’re getting back up again.
  9. Managing pain. I don’t like to toot my own horn, but I’m pretty damn impressed by myself and my strength. I have continued so many activities while enduring my worst-pain level headaches/migraines and I never know how I did it once it’s over.
  10. Really enjoying life in all of it’s beauty. Life will never be full of only sunshine. There will be storms and we will get rained on. But each time the sun comes out, my smile gets brighter and my love for this world gets greater. Enjoying the simple things in life, putting more of my time toward seeing people who lift me up and doing more of what sets my soul on fire are all things I have seen myself get better at doing.

Thursday’s Tips & Tricks: Happy Napping 

  
I know that I need to start taking my own advice, especially when it comes to how long I nap. Because even though I know it’s not good for me to nap a long time, I just can’t betray my bed like that 😁
But if you find yourself wanting to treat your body better, definitely take a look at this cute little graphic that shows the healthy amount of napping time needed! 

  

Tips and Tricks: Resource Pages 

  
Recently I’ve added three new pages to my blog: resources pages for headaches/migraines, narcolepsy, and food allergies.
I went through all the resources as I was choosing which were most beneficial to share (there’s a lot, because there’s so much helpful info out there!) and realized that I wasn’t even aware of half of the info/websites/etc that I shared. That means that there are so many resources for us spoonies to take advantage of: clinical trials, foundations and organizations, blogs, support groups, fact sheets, and so much more! 💻📋📝 I strongly urge you to visit some of these resources every week or so because there’s always new info for us to take advantage of. We need all the help we can get, might as well take advantage of the free help!