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.

Keep Shining For Others

Recently I joined a bible study at my church as a way of growing deeper in my faith, find another community of women I could confide in and also as a new way of finding support with the many ups and downs of life.

Last week at the Bible study, one of the women at my table said something during our discussion that really stuck with me. She said “You might be a light for somebody out there without even knowing it.”

And suddenly I remembered one of the most important reasons why I write, why I have this blog, why I share posts on social media & why I try to be positive in my every day life. And that is to help someone else feel less alone than I once felt.

Be the light

Sometimes I let my fear of judgment and misperception & my fear of failure blind me from seeing and remembering the reasons why I am on this mission to be a chronic illness advocate.

A couple of years ago, I started this blog & my Instagram account as a way for me to cope with the chronic pain I was dealing with. It was way worse than it had ever been and I wasn’t dealing with it in a healthy (I know it’s ironic for me to use the word healthy here) way. So I started writing out how I was feeling both physically and mentally.

But I quickly saw that my words and experiences were reaching people. I had people commenting & messaging me talking about their chronic illness and pain. The light bulb went off and I realized how naive I had been.

Of course I wasn’t the only one dealing with this kind of pain.

While the people messaging me didn’t always have the same diagnosis as me, we all could relate to the lifestyle limitations, the frustrations & the struggles all the same.

My point here is: SHARE YOUR STORY.

By sharing my story, I have been able to connect with people who I have not only been able to help, but who have helped me just as much if not more than I have helped them.

You never know who out there you may be encouraging, inspiring & comforting.

You are somebody’s light.💛

October Intentions: Routines & Habits

This month I want to focus on creating healthy routines & habits that benefit me both physically & mentally.

Here are my intentions for October:

1. Try an anti-inflammatory diet

I want to try a diet that is heavier in anti-inflammatory foods to see if it helps my headaches at all. I’ve also been experiencing inflammation in other parts of my body so I want to see if it will help alleviate inflammation in general.

If anyone has tried this kind of diet and has any tips, please share!!

2. Repeat and use the serenity prayer in my everyday life

God grant me the serenity to accept the things I cannot change, courage to change the things I can; and wisdom to know the difference.

So often I try to change things that are not in my control. I can only control my own actions, not the actions of others around me. Instead, I want to focus on the things in my life I can change.

3. Turn my attention away from things that do not fill my cup.

Someone said to me recently, do things and surround yourself with people that fill your cup, not empty it. And I really took this to heart.

4. Create & stick to a routine

I really need to prioritize my sleep & eating habits. And it starts today!

October intentions

What are your intentions for this month?

Napping In Public & Not Letting Pain Cancel My Plans

This weekend I made a quick weekend trip away with my little brother to Duke University! He wanted to visit the campus & my Virginia Tech Hokies we’re playing them in a football game that weekend, so it was a win-win.

We enjoyed walking around the campus (I’ll admit, it was beautiful.) The weather was great, sunny & breezy & not too too hot.

But as luck would have it, I ended up with a bad headache about an hour or so before the game was supposed to start. I wasn’t surprised by the pain, because we had been walking around for hours in the sun (and the campus isn’t flat, so there were lots of going up & down hills/stairs.)

Walking up stairs, exhausted, out of shape

My exertion headaches have always been ruthless & I haven’t been able to find any treatment that has helped them. So I always just have to suck up the pain if I want to participate in certain outdoor activities.

Because my brother is so patient & always supportive, he was ok with us sitting down and relaxing in the student center for about an hour before the game. We managed to find a place where I could nap for a short bit, because I knew at that point, only sleep would help decrease the pain I was feeling. So that’s what I did, I shamelessly napped in the Duke University Student Center. But honestly, it helped! I felt a lot better when we got to the game and I was able to enjoy the experience with my brother & create those memories with him. I didn’t want to let my pain stop me from being able to do that.

Moral of the story: Listen to your body & do what you need to do to lessen your pain. Getting awkward stares while you nap in public is worth feeling good enough to enjoy whatever event/evening/etc that you had planned! And don’t be afraid to ask the people you’re with to adapt their plans to help you feel better, because trust me, they want you to feel better too!

Shout out to my brother who encouraged the public napping & who is always willing to adapt plans to make sure I’m feeling ok💛

Duke university

Telling Your New Supervisor About Your Chronic Illness or Condition

One thing I have always been nervous about when starting a new job is telling my new supervisor that I have chronic health conditions. It’s a conversation that is necessary but that can cause people to feel uneasy or nervous.

I always worry that my supervisor may be uneasy about my situation and that they themselves will worry about my ability to perform my duties. With a health conditions that are invisible on the outside, like my migraines, narcolepsy, etc., I sometimes worry about the following things: Will they think I may not perform as well as others? Will they get frustrated with how frequently I need to leave for doctor appointments? How understanding will they be when I am having a bad pain day and need accommodations or need to go home to rest? Will they understand if they don’t have health problems themselves? How can I make sure they don’t think I’m faking it.

As with anything, we can’t understand what someone is dealing with unless we are dealing with it ourselves. It goes the same for health conditions. Someone can’t fully understand the symptoms that come along with our conditions & illnesses unless they have that condition or illness themselves.

However, when it comes to working in an office, good supervisors will always be accommodating and will try to understand as much as possible. Even though I’ve always been nervous to talk to my supervisors about my chronic illness upon being hired, I’ve only ever had amazing supervisors who put my health first and who are completely flexible.

giphy

Here are some tips on how to breach the topic and talk through your chronic health conditions & illnesses with your new employers and supervisors:

  • Be open and honest – the more your supervisor knows, the more accommodating, flexible and understanding they can be
  • Remember that everyone is human and everyone deals with something. Maybe they also get migraines or deal with another health condition. Even if they don’t, you have to remember that they will have their own situations that need accommodating from time to time.
  • Remind them that you will be fully capable of doing your job and that this won’t affect your work ethic. Instead, it just means that some days the pain will take control,  that your health will have to take precedent & some days you will have to do what is necessary to feel better or decrease the pain however much you can.
  • Work with them to come up with back up plans on if there’s ever a day that symptoms show up unexpectedly and you need to stay at home on short notice.
  • Tell them about the doctor appointments that you have on a regular basis but make sure they know that from time to time, emergency appointments may come up.
  • Ask them if they require any doctor notes for validation so that you can notify your doctor

Remember: You are just like the employee sitting next to you. You are capable of performing and producing excellent work. You have the same great work ethic and great ideas to contribute. This employer hired YOU for a reason. Because you were right for the job!


Disclaimer: I am not a doctor or a lawyer. The opinions and advice listed above are my own and are based on personal experience and do not reflect the opinions of others. Check out the Americans with Disabilities Act if you have any questions on working as a person with a disability. 

“How To Live Well With Chronic Pain And Illness” Chapter 2: A Not-T0-Do List for the Chronically Ill

I am a huge list makers. If you looked on my phone right now, you’d probably be overwhelmed and confused by the number of lists I have saved. Some of which are extremely random and I don’t remember making.

Living with a chronic illness, I have a mental to-do list running at all times to help me steer clear of increasing the severity of my pain. But this whole chapter in “How to Live Well With Chronic Pain and Illness” is about making a not-to-do list. Here are a few:

  • Do not spend your energy worrying about how others view your medical condition
    • this is one I struggle with constantly. I am always worrying about if people think I’m faking it, or exaggerating my pain. I worry if they think I’m just lazy because I turn down opportunities to go hiking, when really, it would make my head near explode. I worry that people will think I’m no fun because often I have to turn down happy hour invitations because alcohol causes my head to scream. I also always worry that when people see me dancing around and laughing, that they will think I’m “better” and that I don’t have a headache. When in reality, I always have a headache, I just often put my personal enjoyment ahead of them and often put up a front that I’m ok. Just like any other thing in life, we cannot put our focus on how others view us or think of us. What matters is what we know to be true and how we see ourselves.
  • “Do not treat disheartening or discouraging thoughts or emotions as permanent fixtures in your mind”
    • so often I hit dark days when I worry about my life in the future and that I will be feeling sick every day for the rest of my life.These days often entail gloominess and the blues. It’s normal to have these types of discouraging thoughts, especially on days when our pain is at its worst. Do not condemn yourself for these thoughts. These thoughts are not permanent. The blues shall pass and the light will shine through again.
  • “Do not ignore your body’s pleas to say no to an activity”
    • It’s extremely hard to turn down offers to activities that we know will make us feel like the healthier people around us. I remember countless times where I have accepted offers and pushed my body just because I didn’t want FOMO. But, each time without fail, my body ended up paying for it later on. In the moment, it’s easy to forget about the pain. Sometimes, I even forget that my headaches are there due to my excitement or adrenaline. But once I stop moving, trust me, they remind me that they’re still there. The pounding in my head is usually so bad I almost (and likely do) cry. Don’t push your body past its limits. Sometimes on special occasions, if we feel comfortable knowing we will most likely pay for it later, it’s ok to say yes when we know we shouldn’t. But overall, it’s important to stay mindful to what your body is telling you.
  • “Do not put your pre-illness life on a pedestal”
    • this one stuck out to me the most. Almost every day I think to myself “I just wish I could feel like I did x  years ago when my headaches were not a constant.” I daydream about the days where I was exercising daily, partying like a normal young adult sometimes does, and just living life without worrying about setting a reminder for my 3 doctor appointments for the next week. But the thing is, life is always changing. What once brought us joy may not bring us the same kind of joy any longer. Take a look at where you are now, what you’ve accomplished and who you have around you. Ask yourself, did you have these things in your pre-illness life? Most likely, you got to where you are today because of what you went through in the past. And I bet all of you have some really great accomplishments to be proud of and a lot of people who are there for you day in and day out. Put that life on a pedestal.

If you’re like me, than you are your own biggest critic. People like us have a tendency to be hard on ourselves and have a very tough time letting things from the past go.

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Let’s make a promise to ourselves to focus on the good that we have in our lives now, instead of fretting over what we’ve lost from the past.

 

 

#HAWMC Day 14: A Case of the Mondays

Pain. We all feel it. It could be short lasting or seemingly never-ending. We get hurt, we cry, we heal.

My pain is constant. The throbbing sometimes has mercy and I feel “fine.” Other times, it’s relentless and merciless. This past week has been a week of the relentless kind of pain.

On my good days, I go to bed with a headache and wake up with one, but on my good days I am not bothered by it because the pain is so minimal that I’m able to wake up with a smile. On my bad days I go to sleep with a 7/10 headache and wake up with a 7/10 headache, or worse. I’ve been having more bad days than good, lately. It’s extremely frustrating. It’s more frustrating than people can imagine. It’s so frustrating that sometimes, it’s all I can think about. I can be with my friends, and I’m thinking about how my pain is never-ending. I can be in church, and I’m dozing off to think about how my pain won’t let up. It occupies all of my mind and energy.

It bums me out when I have to cancel plans because I feel crappy. It bums me out even when I didn’t even have plans, but I know that I’ll be staying in even if I wanted to make plans. It bums me out to know that I’m no where near as healthy as my peers and even so, no where near as healthy as I, my chronically ill self, have felt before.

bummed-dog

It can be hard to go to sleep and tell yourself to begin the next day with an open and optimistic mind, when every day feels like the same broken record playing over and over again.

Even though it’s hard though, I try my best every single day to remind myself to have a better mindset. I remind myself to attempt to shut off my feelings of “but tomorrow I’ll probably feel awful again,” and instead try to turn on my feelings of “but tomorrow, what if I feel even just a little bit better.”

 

Wednesday Words: Gallimaufry 🌀

This pretty accurately describes the majority of a spoonies life. A confused jumble and medley of things.


Symptoms (and more) are so unpredictable. One day we might feel great and the next day we may feel like we cannot even fathom getting out of bed. Treatments are also unpredictable. Some treatments work, even if only a little bit, and some treatments work so poorly that they may even make our symptoms worse. 

Life is a rollercoaseter for everyone. Ups and downs, unforeseen curves, etc. For people living with chronic illness or disabilities, life is a completely unstable rollercoaster. It’s a gallimaufry. 
 Spot on 👍🏼

Vote For The Headache Heroine in the 5th Annual Health Activist Awards!

I’ve been nominated for three award categories for the 5th Annual WEGO Health Activist Awards this year! The categories I’ve been nominated for are below:

  • Best in Show: Instagram
  • Best in Show: Pinterest
  • Rookie of the Year

Please take a quick minute or two to vote for me on my nominee profile!

I truly appreciate all of the support and am very humbled and excited to even be thought of for these awards! It’s extremely touching and motivating to know that I’ve at least reached and helped one other person over the past year through The Headache Heroine.

Thank you in advance ❤

The Lotus Flower

It wasn’t planted in a bed of full soil among other lucky seeds. It wasn’t given what others were blessed with. It was born an underdog.

I was not built to live in a fully healthy body like so many others around me. I was handed cards that others have been blessed not to have received. I was born an underdog.

It grows within muddied waters and it has to push its way out to get some light in its life.

I continue to grow despite each new obstacle that life throws my way. I push my body to whatever helps it feel healthier.

It reaches the light, blossoms and thrives despite its unfavorable beginnings. It is a Cinderella story.

I push myself further and harder each day so that I, too, can blossom. So that I may reach my sun and come out on top, despite the unfavorable circumstances I’ve been given. Despite the never ending headaches and the on-going speed bumps in my journey to find treatments that help. Despite the wear and tear that my heart, mind and body have undergrone throughout it all.

I will become the Cinderella story.