When Napping Feels Like It's Ruining My Life

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I’m not one to exaggerate, but napping is ruining my life. As I complete the last few weeks of my master’s degree, I struggle to make it through the day without a nap. No matter what time I go to sleep at night or how late I sleep in each morning, I rarely have enough energy to be productive for more than a few hours at a time. I have to pick and choose what I want to achieve each day, because I simply cannot complete it all. My fast-paced, high-achieving normal self has succumb to a schedule that caters to insufficient energy levels.

For those of you who don’t know, I have Crohn’s disease, and over the past couple of years, it has dictated what I can do and when. I’ve dealt with flare-ups, surgeries, finding the right medications, and most recently, extreme fatigue. By far, the most debilitating aspect of my chronic illness as of lately is my lack of energy (fellow chronic illness warriors out there may know this as The Spoon Theory).

Just as luck would have it, I am experiencing one of my worst bouts of fatigue at a point in my life where I am trying to finish my graduate degree, travel the country, and start my career in public accounting. I typically write about my disease through a positive light, but there really is no pretty way to paint this picture. Every week day, I wake up, commute 30 minutes to class, sit through a few hours of lectures, drive 30 minutes home, and immediately am exhausted and need to sleep. If I am lucky, I may have enough energy to stay a few minutes late on campus to finish up some work, or squeeze in lunch before I feel an unrelenting and draining wave of tiredness sweep over me.

I may nap for an hour, I may nap for three hours. When I wake up, I am sometimes just as tired as when I fell asleep. Naps consume my entire afternoon on most days, making it difficult to do anything beyond the bare minimum required of me. You can see how this might pose a problem as I strive to maintain my super-girl mentality and accomplish everything on my to-do list. For example, I am supposed to be studying and sitting for the CPA (certified public accounting) exams, but I barely have enough time in my day or energy in my body to study for my classes. It is painful to sit in a classroom and listen to my peers complain about not wanting to spend the afternoon studying for their upcoming CPA exam when I would kill to be able to do so. I love studying and learning, but recently my fatigue has sucked any pleasure out of my education, forcing me to settle for what I can easily accomplish instead of what I know I am capable of.

My tiredness has prevented me from sticking to my typical workout routine; I have not stepped foot into the gym in almost a month. To some, this might sound like a great thing, but I love to exercise and not being able to do so is discouraging. Not having the energy to do things I love is frustrating, especially when I know the root cause is my disease. Anyway, I could go on and on about how I feel like my days are wasting away and sometimes this disease really stinks, but I feel myself starting to
complain and that is not the point of this article.

To sum it up, napping is all fun and games until it becomes mandatory. Children hate nap time in pre-school because it is not a choice. Teenagers love napping because it is a conscious decision that they can opt out of if they so choose. When my body decides it has worked too hard in just functioning and needs a quick break, sometimes I do not have a choice to ignore that disappointing message. The past few months have been difficult for me, but have made me realize a few things. If you struggle with disease-related exhaustion, remember this:

Do not compare yourself to others: Hearing about my classmates passing their CPA exams used to make me happy for them, but also sad for myself. I have come to realize that they are not fighting my fight and thus I cannot hold myself to analogous standards. Despite what I had initially thought, juggling a career as a full-time graduate student while also trying to pass the CPA exams is too much for me, and that is OK. Realizing my limits allows me to set my own standards of success instead of comparing my outcomes to those of others.

Celebrate the good days: This one is self-explanatory. The days I can go to class and get homework done and still have energy to play my guitar bring me so much joy. This compensates for the days when I sleep my afternoon away. The good days allow me to appreciate minor accomplishments that I used to take for granted, so at least that is a silver lining.

Compromise: This fall I have not been able to exercise as much as I normally do, if at all. Instead of letting this setback get me down, I have compromised with myself: I do at least 50 push-ups every morning and sometimes take my dogs for a walk around the neighborhood because that is typically all I can handle. If I can do those things, I have succeeded and am satisfied.

Investigate any underlying medical explanation: I have shared my increasingly interfering level of fatigue with my Gastroenterologists. After a few referrals, adjustments to my maintenance medications, and several blood tests, the conclusion for right now is that my exhaustion is from my body being under the tremendous stress of a chronic disease that is not quite in remission yet; this is a common occurrence for Crohn’s patients. This answer is frustrating because it does not provide a solution to my problem. I am patiently waiting for the day I wake up full of energy again. Regardless, it is always important to let your doctor know what is going on.

I have endured extreme pain and exhaustion because of my Crohn’s disease and I personally rank the former as much less devastating than the ladder. If you can relate to what I am going through, I am so sorry, but please remember that you were given this battle because you are strong enough to fight it.

Follow Ashley’s journey: @ashleyesper || AshleyEsper

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Maintaining a Positive Body Image With Ostomy Scars

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It is finally November! With November being Crohn’s Disease Awareness Month, I know it holds a special place in the hearts of my fellow Chronies.

I am not going to make a list of facts about Crohn’s or anything of that nature. Instead, I am going to talk to you all about something that hits home with me:

Positive body image.

Three years ago, I had an ostomy placed as a last resort to try and get my Crohn’s symptoms under control, as I have had a malicious fight with Crohn’s disease with no relief in sight for nine years now. Due to excessive output from my ostomy, I had an early takedown, which resulted in an intestinal leak, which then led to sepsis, intubation and a hospital stay exceeding 40 days, resulting in a second ostomy.

After a period of struggling, I had my second ostomy taken down with a successful re-hook and got to go home. When I got home, I went into my room, stood in front of my full-length mirror and saw my stomach and all my scars. I took a deep breath and instead of having a meltdown, a smile came to my face. These scars didn’t represent the horrible things I had been through anymore. Instead, they represented how strong I was, how I had a drive for success, how I was a fighter, how I refused to ever settle or give up.

young woman standing in front of a lake and wearing an open flannel jacket with visible scars on her stomach

My platform “EveryBODY is Beautiful” was born. This platform simply encourages a positive body image because I know everyone has a few things they can point out that they don’t like about themselves when they look in the mirror.

This journey of loving myself has not been a walk in the park. Sure, I have come across times where I have been at a pool party, horrified to take my shirt off because I don’t want others to see my scars. But thankfully I have been blessed with amazing friends who will always go to bat for me if anyone has anything negative to say, and I also must remind myself that this is one of the most beautiful parts of my chronic illness journey and who I am.

Embrace your scars, always.

In closing, I would like to challenge my readers to stand in front of a mirror and point out at least 10 things you love about yourself, then pass the challenge on to someone you know. When you wake up loving every aspect of yourself, everything else seems a little brighter.

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The Song That Makes Me Proud of My Scars

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As a Crohn’s disease patient with a permanent ostomy and severe fistulizing disease, I often look to music for solace. Listening to soulful music isn’t just soothing; it helps me cope, process and move past the never-ending laundry list of health issues I face. One song that hit home the second I heard it was “No Scars to Your Beautiful” by Alessia Cara, and it has been on repeat ever since.

It goes:

You should know you’re beautiful just the way you are,

And you don’t have to change a thing, the world could change its heart,

No scars to your beautiful, we’re stars and we’re beautiful…

What do these lyrics mean? Do they mean that no scars truly exist or that we can be beautiful in spite of our scars? For me, it is a little bit of both. Scars, whether physical or emotional, show life experience and resilience. They are the badges we wear to the battles we face. We are often ashamed of these scars but why? Because they make us appear different? Because they’re “ugly” or because they aren’t “normal?” What even is normal? And what is beautiful?

Beauty is in the eye of the beholder, but beautiful is what we define it to be. We create our own beauty in our attitude and in our uniqueness. I would be lying if I said our scars don’t define us. They make us who we are, but do they run, or worse, ruin our lives? Only if we let them. So why let them? Why not wear them like the badges they were meant to be? Why not own them and make them ours? Why not let them make us beautiful?

girl sitting in hospital bed

As someone who has undergone 20+ surgeries and hundreds of invasive procedures and imaging studies thanks to my BFF Crohn’s, I refuse to let these scars weigh me down. They are me and they make me whole. They are my battle wounds, my own version of beautiful, and I wear them chock full of pride.

While I haven’t been able to maintain a fulfilling career, these scars serve as my lifetime achievements. They are the medals I bring home each time I return from the battlefield, er, the operating room. They show courage in the face of tragedy. They show resilience and perseverance when all odds have been stacked against survival. They show survival in the face of near-death experiences.

One of my deepest wounds both emotionally and physically has been my ostomy. So what do Alessia Cara’s deeply powerful words mean to me as an ostomate?

We are beautiful not just in spite of our ostomies; we are beautiful because of our ostomies. So what if the world judges us for “wearing bags filled with crap” or “having a surgical opening with a part of our intestines hanging out?” Do our critics know what it feels like to have a surgery that is life-saving? This device, this ostomy, saved my life over and over again and still does every single day, so much so that I couldn’t imagine life without it. The life this ostomy breathes into me is more than a blessing. It is a work of art. It is a wound from which light emanates, a ray of light that exudes hope and positivity while giving us another chance at life. It is a scar that unveils a better version of ourselves, letting the diamonds within us shine. Because of our ostomies, we are able to rise from the ashes of our deep and dark struggles. And most of all, we are real soldiers because of our diseases and our scars are our prized possessions. That, in and of itself, resonates beauty, a beauty so profound that no one can take it away from us.

The reality is we really don’t have to change a thing other than our own attitude towards the ostomy. The world can and will change its heart but I believe change begins with us as patients and ostomates. Change begins with our attitude toward our own ostomies. If we view it as a positive, life-saving force, I think so will the world.

So be bold, be beautiful and own your ostomy. Own your scars. Wear them proud. They are you and they make you you. And that is true beauty.

Let your scars open up your world and allow your beauty to radiate and permeate. And let me extend Alessia Cara’s mantra from my heart to yours: There are no scars to my beautiful.

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No, My Invisible Disease Is Not 'All in My Head'

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I’ve always been a sickly kid.

I had pneumonia nine times before the age of 10. I grew up using a breathing machine every few months. When I was 14, my eyes were mysteriously crossed for three months, to the confoundment of every doctor I visited. For two years in high school I suffered from debilitating chronic migraines. I’ve had pretty much every test and procedure a human can have at this point, from EEGs to CTs to colonoscopies.

And when I was 17, I was diagnosed with Crohn’s disease.

When you’re sick all the time, people tend to want to find simpler explanations. And the simplest explanation of all, it seems, is that it’s all in your head. It’s a lot easier for people to stomach that you want attention, or are just a bit anxious and neurotic, than that a teenage girl is just legitimately ill, and often.

So because of that, and because it seems I’ve been sick with some odd illness or another since before I could talk, the hypochondriac comments have also been a hallmark of my existence. It doesn’t help that as an adult, I’ve also had anxiety and panic disorder. If you’re mentally ill, it’s super easy for everyone from doctors to acquaintances to chalk up your physical symptoms to something you’ve made up in your mind.

But here’s the thing — being chronically ill sucks. It’s physically trying because hey, pain, but it’s also mentally trying for a number of un-fun reasons. And one of the biggest reasons? Feeling like you have to prove to people how sick you really are.

When people reach for the hypochondriac thing, it makes patients feel like they have to prove themselves — and believe me, they can. My illness is “invisible,” but I could show you blood panels that “prove” just how high the inflammation in my body is. Better yet, if I’m feeling particularly sassy, I can show you a picture of the inside of my colon. Because I have it on my phone.

Point being, you should never make an ill person feel like they have to prove themselves to you. I know it sounds unbelievable that I’m flaring yet again, or that I’ve got another infection. But since I’m the one who has to deal with that physically, instead of opting for emotions like disbelief or skepticism, go for support. Honestly, the best thing a person could give most sick patients is unyielding support and belief.

And when you don’t believe someone who’s sick, you’re probably also making them doubt themselves, which can be bad for their health. Because I had grown up with bad internalized feelings surrounding feeling like my disease was all in my head, it took way longer than it should have for me to be diagnosed with Crohn’s. I thought having stomachaches on a daily basis and not being able to eat was somehow a thing I had done to myself. That’s why, while my diagnosis was one of the hardest things I’ve ever dealt with, it was also a relief. There was something actually, medically wrong.

While there are always going to be people out there who exaggerate their symptoms for attention or actually do have hypochondria, I think the number of those people is much smaller than the number of people actually struggling every single day with random diseases and weird aches and pains. So before you call me a hypochondriac, think about just being a kinder human instead. Unless of course you really want to see the inside of my colon, because we can make that happen, too.

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When People Are 'Grossed Out' by Your Disease

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“It’s called Crohn’s disease, it’s an autoimmune disease that causes inflammation in the gut.” That’s how I used to respond when someone asked about my disease. Most people left it at that or gave me some sort of sympathetic response. They don’t ask about what the inflammation does to me or how the disease manifests. “Disease of the gut” seemed like a safe response. It was a response that saved me the burden of grossing someone out by my disability.

People are grossed out by diarrhea; people are grossed out by the word diarrhea. Generally, society is grossed out by butts and bodily fluids, period. I was diagnosed at 14 and up until this point I’ve felt ashamed of my illness. I’ve been embarrassed about my disease and absolutely everything that comes with it. I’d rather pretend nothing was wrong than have to tell someone about it. But I’ve been struggling for five years now, so this is what I want to talk about. This is what I want people to know about my disease that I don’t talk about.

I don’t talk about the nights I spend in the bathroom shivering on the toilet because I have diarrhea for the 27th time that day. I don’t tell people about getting faint and choking on my own vomit. I don’t talk about the hours I spend curled up crying with abdominal pain. I don’t talk about the quarts of blood I’ve passed through my bowels or how tired I am because I haven’t eaten in a week. I don’t talk about my annual colonoscopies or rectal exams. I don’t talk about the endless prescriptions and dangerous drugs. I don’t talk about bowel incontinence or the anxiety of public restrooms. I don’t talk about how depressed I get when I’m too sick to leave the house for weeks at a time.

Crohn’s disease has drastically affected my quality of life, so why aren’t I talking about it? Why do so many people have IBD yet so little people know what Crohn’s disease actually is? What is so taboo about diarrhea and butts and colons and puke and poop? Why have I spent so much of my life being ashamed of something I have no control over?

Yeah, I know, IBD is “gross.” But I’m over it. I’m not the only person suffering like this and I’m sure I’m not the only one who has felt embarrassed by their disease. Since I’ve started talking openly about my disease, I’ve properly educated people on an extremely debilitating and dangerous condition that affects millions of people all over the world. I love my body, and I’m over being ashamed because society thinks my disease is gross. I’m not any less of a person for suffering from an embarrassing disease. IBD isn’t a private or hygiene matter, it’s a public health matter and we should all know and advocate what Crohn’s disease really is. I want to bring true awareness to my “gross” disease.

IBD stands for inflammatory bowel disease and is the chronic inflammation of the digestive tract. IBD consists of ulcerative colitis and Crohn’s disease. The conditions are similar and cause severe diarrhea, pain, fatigue, weight loss, and countless other symptoms. IBD is debilitating and can lead to life-threatening complications. Yeah, it’s kinda gross. Get over it.

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When Your Pain Gets 'Lost In Translation' Between Doctors and Nurses

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“My pain level is increasing steadily and is becoming concerning. I’m afraid of a local hospital visit because of my last experience, although it’s not to that point yet. It’s not every day. But when it hits, it’s horrible and affecting me quite badly. I’ve seen little improvement since increasing my infusions and my quality of life is being affected.

Any advice is greatly appreciated!”

This is how the email I sent to my gastroenterologist went, pretty much the exact wording. I sent this on a Friday afternoon not really expecting a response until Monday. Instead I got a response later that day. I’m not sure you can really call it that. It was a single sentence:

“Doctor will discuss at next clinic visit.”

My next visit is almost three weeks away!

Having a chronic condition is a balancing act, a very unbalanced one. I’m in pain, how is this OK? How can this wait three weeks? The concern over my health should be taken more seriously right, not answered with a single sentence?

My quality of life is being affected! Having Crohn’s disease has made my life unpredictable. It causes me to shy away from making plans or leaving my house at times. My life is not the only one affected — my 6-year-old son knows we can’t go to the park, because Mommy’s tummy hurts and there’s no bathroom there. Or date night with my hubby consist of me watching him eat.

I think a lot gets lost in translation in emails and texts. I love the option to email my GI… but it first goes to a nurse. We call them the gatekeepers!

They can make the difference between hearing back from your doctor quickly, or scheduling an appointment because you need to be seen sooner.

My team is good, my doctor is amazing and her nurses are the backbone of her practice. But I was disappointed with this interaction. It’s now 3 a.m… I’m awake and in pain. If I call my doctor, I’ll get an on-call resident who doesn’t know me. Who will advise me to go to the ER… because they don’t know me!

Advocating for yourself is very hard when you feel grossly out-numbered by professionals.

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