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.💛

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

FDA Approves First Migraine Prevention Drug!

Just last week, the FDA approved the first drug designed to prevent migraines! It’s been all people are talking about in the headache/migraine community, because it’s a pretty big deal!

Living with migraines is tougher than most people can imagine. What can be even tougher, is finding the right doctor, the right treatment and finding both without going broke.

Check out a few links that I found to be helpful in reading about this new FDA approved migraine prevention drug and how it can be accessed:

 

“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 9 Summary: “Cultivating Kindness”

People will forget what you said, people will forget what you did, but people will never forget how you made them feel.

-Maya Angelou

This chapter is all about being kind. She says that kindness is a universal form of communication. We so often direct negative judgment toward ourselves. People with chronic illness (I’m speaking for all of us here, as an assumption,) definitely tend to do this. “Why does my body hate me?” “Why can’t I do things like I used to?” “I hate living this way.” etc etc etc.

But just imagine what it would feel like, if instead, we treated ourselves with the constant kindness that we so often show others. If we can be friendly to others, we should be friendly to ourselves as well.

She goes on to talk about how the mind is flexible and changeable. In order to get us all to start cultivating kindness, the author share in this chapter some of her favorite quotes on kindness:

“Tenderness and kindness are not signs of weakness and despair, but manifestations of strength and resolution.”
-Kahlil Gibran

When we extend kindness to someone else, it helps take us out of our own minds and away from being preoccupied with our own problems.

“Kindness is within our power even when fondness is not.”
-Samuel Johnson
This quote I think is even more relevant in today’s world. Where we may not all agree with one another, we can still be kind. Even though we may not find another person easy to get along with, we can still show compassion.

“I’ve always depended on the kindness of strangers.”
A Streetcar Named Desire
We with chronic illness can definitely relate to this one. We may find ourselves in situations where we have to rely on a stranger or acquaintance to help us if we are not feeling physically well enough to do something ourselves.

“No act of kindness, no matter how small, is ever wasted.”
-Aesop

Every. Drop. Counts.

The author ends the chapter with this powerful quote by Henry James:

Three things in human life are important: first is to be kind; the second is to be kind; and the third is to be kind.

 

“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.

 

“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.

“How To Live Well With Chronic Pain and Illness” Chapter 6 Summary: “Complaining Is a Recipe for Suffering”

When you live with a chronic illness or condition, you find that there is never a shortage of things to complain about. However, this chapter focuses on how to acknowledge those complaints and be mindful of those we have control over and those we do not.

The author in this chapter tells us to separate our complaints into three parts: (1) complaints involving circumstances over which we have no control; (2) complaints involving circumstances over which we might have some control; (3) complaints involving circumstances over which we have total control. She then writes about each separate part, which I will summarize below:

No Control

So many things in our life happen out of our control. While we can’t change what happens, we are able to change how we respond to those circumstances. Complaining about facts and situations that are true and out of our control only causes us additional and unnecessary suffering–which we do not need more of. The author then quoted the Thai Buddhist monk Ajahn Chah and I loved the quote:

If you let go a little, you will have a little peace. If you let got a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.

While I like this quote, it’s also easier said than done: letting go, that is. So when you find yourself just unable to let it go, instead, just let it be.

Partial Control

Some examples of complaints that are under our partial control were: friends who don’t call often, a complaining partner, and the presence of physical pain. She suggests looking for “skillful actions” that can help ease the stress that this complaint is causing. For example, finding new ways of communicating with your partner, looking for pain clinics and new doctors, and picking up the phone to call and reach out to your friend yourself.

Total Control

Total control is almost non-existent for people with chronic illness and pain, even sometimes for people without it as well. Out of the list of complaints that she gave as examples, she was unable to categorize any of them into the total control category.

 

I will leave you with this, my favorite words of hers from this chapter: “Complaining is a habit that clouds our ability to see that most of our complaints involve circumstances over which we have little or no control.”

Complaining is natural. I, for one, complain much more often that I should. I have an extremely hard time letting things go. It’s one of my biggest flaws. But more recently. I have acknowledged this within myself and have been actively trying to let things go and let things be, since I know I have very little or no control over the vast majority of things I tend to complain about.

 

 

“How To Live Well With Chronic Pain and Illness” Chapter 5 Summary: “When the ‘Want Monster’ Whispers in Your Ear

This chapter of the book “How to Live Well With Chronic Pain and Illness” is all about how sometimes we want something so badly that we let our happiness depend on it. For us “spoonies,” most of our wants are health related wants. Wanting a pain free day, wanting a cure, wanting to be able to be physically active, etc. The author describes the feeling of wanting something so badly that our happiness depends on it as the “Want Monster.”

When the “Want Monster” comes around, we convince ourselves that we will truly be happy once we get the thing we are so badly yearning for. For me, I often hear the “Want Monster” telling me that if I could back in time to when my chronic daily headaches weren’t a thing, then I would be happy again. That if I was healthy like my peers, then I would be fully happy. Here’s the problem with that outlook, though: I would still have my share of problems whether I’m healthy or not. Everyone has problems. Not everyone has health related problems, but everyone has them.

True happiness emerges from the acceptance that not everything in life will go our way. Happiness comes from us finding peace with the hand that we’ve been dealt.

I know that I would be happier in most situations if my chronic daily headaches and migraines disappeared forever, there’s no doubt about that. But, I know that I have found some truly great and happy times due to my health conditions. I’ve found amazing people and opportunities and have learned a lot about myself.

When the “Want Monster” tries to enter your life, push it away. Find peace with your life as it is currently, and then you will find a pure happiness.