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

September Intentions: “A Little Less Talk, A Lot More Action”

I’ve decided to really focus on living my life, day by day, with more intent. And when writing down what I wanted my intentions for this new month to be, I realized there was sort of a theme: A little less talk, a lot more action.

I always tell myself I will put more time and energy (what little of both I have left in my week) toward my writing, my blog and my efforts to create a community for people with chronic health problems. But I never stay true to my own word. I’m not proud of it, so I need to find a way to actually live out my intentions.

And I’m hoping these September intentions will help me do just that.

September intentions

Do have something you’ve told yourself you will start doing that you haven’t started actually doing yet?

What advice do you have for people with chronic illness on putting their words into actions – especially when we have less energy than most?

What are your intentions for this month?

Falling Like the Rest of Us

Falling is an accident. Staying down is a choice.

Sometimes it feels like we are constantly falling. You know that feeling you get in your stomach on a roller coaster drop? Or the feeling when you trip and fall on your face in front of a bunch of people? Or when you somehow fall UP the stairs?

When your health continues to knock you down over and over again, that feeling becomes overwhelmingly normal and strong. We can convince ourselves that we’re the only ones falling this much, because no one else has the same or as many or as debilitating health problems as we have.

We look around and see that everyone else is on their feet, heads held high just emitting “I have my life together” kind of vibes.

But in reality, every single one of those people you see and pass by every day has fallen at one point. More than once. Whether it’s due to health challenges, relationship problems, family issues, job losses, etc. It has happened to everyone.

Some of those people are standing again because they made the choice to not stay down. If they can make that choice, so can you. Yes, some people get knocked down and tripped up more than others. But it happens to all of us. No matter how many times we fall, we have to make the choice to stand back up.

And make sure to do what you can to help the people around stand back up. They may need your help just like you may need theirs. They could be falling in the same moment you are. Grab each others hands and pull each other back up.

Aerial yoga, falling

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. 

The Reasons I Sometimes Don’t Practice What I Preach

Why is it that we can urge people to take control of their health when sometimes we aren’t even taking control of our own?

Do you ever catch yourself doing this?

This is me calling myself out on doing it.

Recently, I have been ignoring new symptoms or pain and procrastinating making new doctor appointments because I’m afraid of hearing a new diagnosis, or having a doctor tell me I that I need to try a new treatment. I have been ignoring things because I am afraid to deal with what comes next.

The last few days, I have been thinking a lot about why I have been doing this – trying to get a better understanding of whatever is subconsciously holding me back from practicing what I preach to so many.

Here’s what I’ve come up with:

New medications make me uneasy

I’ve been seeing all different types of doctors more regularly than your average person since I was about 12 years old. For a while, I was rotating through so many different medications/pills for my headaches & migraines that I honestly don’t remember a lot of the ones that I tried. I’ve experienced little to no side effects and I’ve also experienced some pretty intense negative side effects. Because of my experiences, I get uneasy about trying new medications. I also get uneasy about the fact that I continue to put these chemicals in my body without knowing how they will affect me. So, over the years, I have become more hesitant to readily fill a prescription a doctor quickly suggests.

I don’t want a diagnosis of yet another condition/syndrome

Another reason I subconsciously procrastinate dealing with new pain & symptoms is that I have received four new diagnoses in the last four years – a severe food allergy, Narcolepsy w/o cataplexy, Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). So I am scared that if I go to another doctor with new pain or new symptoms, they’re gonna slap yet another label on me. Which, I know, it’s better to have the knowledge than to be ignorant to it. And I can’t predict the future. And I shouldn’t worry about things before they happen. I know. I get it. But it’s hard to think that way when I’ve been through this pattern of “go to new doctor, get new diagnosis.”

I can’t afford another condition/syndrome

It’s uncomfortable to talk about finances and even worse to think about them. But as people with chronic illness know, a lot of your money goes toward your health (or rather, trying to fix it.) Most people my age are both 1) spending their money on travel & activities and 2) saving it. I feel like I’ve had to pick one of the two. And I can honestly (and either shamefully or shamelessly, I haven’t decided yet) say that I have not been saving mine, and instead been spending it on my health & living life as an adventure. I want to participate in the things my friends are doing. I want to see the world. I want to make memories. When you’re sending a big chunk of your money on doctor visits & treatments, you really have to pick and choose where your remaining money goes. So I know that seeing a new doctor and possibly paying for new treatment only means more of my money will not go where I want it to.

I know, I know – this sounds like a whole lot of “cry me a river,” but it’s something I think a lot of people with chronic illness deal with.

Like anything else, though, I know it’s not OK to ignore something just because you don’t want to deal with it. I know that the reasons I have listed above are very valid reasons for me to be hesitant to address these problems – but they aren’t reasons for me to pretend these problems aren’t there.

I write this post as a way to 1) hopefully write something that you can relate to, so that you don’t feel so bad if you are also procrastinating dealing with a new health problem or symptoms and 2) to hold myself accountable.

If we talk the talk, then we should also probably walk the walk.

“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 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.