How My Bike Gave Me Freedom [Part II of II]

I hopped on my seat and looked down the winding path ahead. I slowly found my balance and started pedaling. The pedal assist was on setting two, and it gave me a boost forward right away. I laughed out loud and a big smile appeared across my face.

“This is so fuuuunnnn!” I cried, glancing up and squinting in the bright sky.

“Are you okay? How does it feel?” my boyfriend yelled back turning his head slightly.

“It feels great!” I yell to him. “Wait stop – this is so beautiful! Can we get a picture??”

“Absolutely!” he said with such enthusiasm and pure excitement.

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My first picture of the day. I am wearing my “Mighty” shirt because it just felt right. Underneath the bridge was a fast running creek cutting through rocks. I peered down and felt very subtle splashes of water hit my face. We continued riding through the winding path, up a tiny hill and down again. As I rode, I realized my bike didn’t have a name. This little white beauty of a bike, one that is giving me the freedom to go out and explore nature, enjoy time being active with people who are close to me, and re-instilling some adventure back into my life, surely deserves a name. Penny or Pip?

Pip. Definitely.

I rode through the hills and around a medium sized glassy lake. We stopped and took pictures, soaking up the nature and the God given beautiful day. We explored hidden places. We sat on a log resting on the beach – the only ones there – just enjoying the silence and each other’s company.

We finally made it around the entire lake and found our way back to the car. I plopped down on a rock heavily, but my heart was filled with gratitude and my soul was dancing.

4.5 miles we rode. I cannot believe it. Yes I had pedal assist, but still. With chronic illness, I can barely stand for 5 minutes sometimes.

Pip is more than just a bike. She is my gateway to freedom. My way of feeling alive and a means to exploration and adventure, which for a while now has been lacking in my life.

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We all need to feel liberated. We all need adventure. We all need to feel like we belong and that we are a part of this wonderful world.

Chronic illness friends, I encourage you to think of things that give you a sense of freedom. What awakens your spirit? Whether it is sitting outside in nature, drawing/painting, reading, using your walker to be outside, or having someone push you in your wheelchair as you feel the breeze hit your face and blow back your hair – you need that. You deserve that. You are worthy of that.

We all are. Chronic illness or not.

 

How My Bike Gave Me Freedom [Part I of II]

Hello lovely friends. I hope this weekend is treating you well!

So I did not move blogs. I switched gears a little bit but you can still find my blog here.

I’m totally good with it. I love this community. 🙂

Today I want to talk a little bit about freedom with chronic illness, and lack thereof.

Chronic illness has stripped A LOT away from me, and unfortunately, I am in good company. Upon getting diagnosed with a chronic illness and even before the diagnosis, there is a feeling of sadness, defeat, and anxiety. In some cases, one becomes confined to the four walls of one’s living room or bedroom, occasionally making it outside on a nice day to sit in the sun (if illness permitting). Then there are individuals who are confined to their beds and unable to move from the mattress supporting them. To some people, this may sound nice.

You get to lie in bed all day, what’s so bad about that?

I was never fully bed bound, but in the early stages I spent a significant amount of time in my bed and on the couch. I can tell you firsthand that it is not a party, because it is no way to live. Why would anyone want to spend their time laying in bed when there is so much of the world to see and experience? It’s not freedom. It’s not joy. It’s confinement. Bed does not become a place of comfort and relaxation. It almost starts to feel like a prison.

So what do you do when you cannot exercise? When you cannot walk too far? When you cannot stand for more than a five minutes at a time? Because let me tell you, staring at those same four walls can make anyone go stir crazy – even when you are sick and do not feel well.

You adapt.

For some people that means getting a wheelchair, walker, or scooter. My walker was a blessing in disguise. It let me do so much more than what I thought I was able. I grew a little stronger as the years went by (thanks to different treatments, medications, physical therapy, and of course proper diagnoses). I am still not 100%. Heck, some days I function and run on a battery of a measly 10% charged. I manage. But there is still so much I cannot do.

Then, I met Pip.

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Yes – Pip is a bike. But not just an ordinary bike. Pip is an electric bike with 4 levels of pedal assist ranging from mild to strong.

So I know what you are thinking.

Why did you name your bike?

Here’s the simple answer: just like people name their boats, cars sometimes, and other inanimate objects that are important to them, this bike is no different. She’s special. She needs a name, and naming her just felt right.

I’m not crazy if that’s what your thinking.

I’m joyful. I’m thankful. I’m free.

This concludes part I of II of this blog post. Stay tuned for the detailed story behind Pip, why I gave this bike a name, and the freedom I felt yesterday on my first real adventure.

 

Natural Hair and Bare Faces

Let’s talk about the fact that society says that women need to either a) enhance their features, or b) change how they look.

Let’s talk about the number of eating disorders present in the United States alone.

Let’s talk about how corrupt our society can actually be.

And let’s talk about what we can do to go against the grain. How can we be authentically ourselves? How do we get to a place where we do not feel this overwhelming pressure to conform to societal standards that, let’s face it, resemble that of perfection?

Let’s talk about natural hair and bare faces.

I’m no body-positive guru that is here to preach about how we all need to love how we look. How we need to feel confident in our skin and in our bodies all of the time, because we are each beautiful in our own unique ways, blah, blah, blah.

I don’t want to say that is a load of crap, but…

As someone who has struggled with a relentless eating disorder for seven years, I know it’s not that simple. Being in recovery for a solid two years, I still struggle, immensely I might add, with body image. I think the key though, is to start off small.

As a child, I always hated my hair. I thought that the only beautiful hair was straight hair, and I did not have that. I was cursed with this awful curly, frizzy mess. I spent countless hours straightening my hair, trying to get it poker straight, flat, and smooth. It has taken me a long time to be able to embrace my natural hair, and now, I truly do! And NOT just because I am lazy! In all seriousness though, I have grown to love my hair, and I have learned and am still learning that beauty takes many forms.

Makeup. Let’s talk about that. There seems to be this unwritten rule that states that women cannot look presentable unless they have on makeup.

Not. True.

Just like any other girl, I do enjoy getting dolled up from time to time, doing my makeup and feeling “put together” if you will. HOWEVER, I feel even better when I come home, and can take it all off – ridding my face of the cakey BB cream, face powder and blush. Taking off my mascara. Letting my pores breathe again. It’s honestly such a good feeling. And why can’t we take this feeling with us when we leave the house? I am getting more and more comfortable going out with my natural hair and makeup-free. I am learning to accept the parts of myself that I once hated. I am starting off small. Embracing my natural hair and skin is no easy feat. But the more comfortable with myself I become and the more I leave the house my natural self, the easier it gets. Loving my hair and skin can be hard, but loving my body can be even harder. I hope that this growing confidence in one area can transfer over to my body as a whole, and who knows, one day it just might. But we need to take small steps, and of course take it one step at a time. We can start by not feeding into these God-awful standards that society has set for women in particular. I know I said I wasn’t the body-positive guru, but I am going to get slightly corny here while telling you the truth at the same time: the body that you have, the features that God blessed you with, is beautiful. You don’t need the hair straighteners, the blow dryers, the makeup, the nail polish. Sure, that stuff is nice sometimes. When it becomes dangerous is when you think you cannot leave the house without it. When your self-worth and self-esteem rides solely on your appearance. Be cautious of this.

Let your hair down. Let your skin breathe.

Your okay.

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Let’s Talk About Bed (Spoonie Editition)

Let’s talk about bed – chronic illness style.

My bed and I have a love hate relationship, with mostly love and a little hate.

On Instagram, I was scrolling through my feed to see that the majority of my pictures are taken from my bed. My heart sank a little and I started to feel bad, guilty, embarrassed. I can’t pinpoint one emotion, but I think I felt like I should have a greater variety of photos. And don’t even get me started on those should statements. But I see so many people with beautiful pictures from hiking, biking, and even bright colored foods that look so good and delicious! Why is it that I can’t seem to get a picture to look that good??

But I digress.

My bed is where I spend the majority of my time on my days off and when I come home after school, appointments, internship, etc. And there is no right or wrong on social media. My account is my experience in this crazy world. It is what it is. My bed is a huge part of my life and where I do everything. From school work, to sleeping, to watching television, to blogging, to reading, to resting, to just laying. As someone who struggles with multiple chronic illnesses, I have come to find that a good bed is a must – an essential to living. Why? Simply because it is where I spend a lot of time when I am home. Sometimes I will lay in bed for hours half asleep, or feel like I am being weighted down and it takes all of the effort I have to get up. I love my bed, because it allows me to rest. It gives me comfort when I am not so comfortable. But there is also a small portion of me that hates it. I hate my bed at times because I almost feel like it is a confinement. Of course I don’t have to be in bed, but sometimes it feels like once I am in bed I cannot leave. Sometimes, the fatigue and exhaustion is so bad that it’s the only place I can and want to be. In this sense, it can be like a prison, because I want to be out in the world. I do not want to be sleeping for hours during the day, or feel stuck in bed all afternoon. I want to be able to get into bed at night sleepy, and wake up refreshed and ready to take on the entire day.

But that isn’t my reality – and that is okay. I am learning to embrace this life. I appreciate the little things, like riding my bike up and down my long driveway, sitting outside in the sun, reading a good book, and playing with my dog. I capture those moments, too. It may feel like those instances are blips in time compared to the amount of time I spend in bed, but it makes those moments that much more special and enjoyable.

And I am going to rock those photos from bed – because I have nothing to apologize for. My only hope with my IG account, and this little blog, is that it can bring hope and comfort to others. I share my story not so much to make it known where I have been and what I currently go through, but to let others know that they aren’t alone, and to connect with others who get it.

“Comparison is the thief of joy.”

I like to remember this quote, especially when it comes to social media. What we put out there is our own experience, and you cannot compare apples to oranges. How many likes you have, where you take your pictures, what your pictures look like – that does not really matter. In fact, it does not matter at all.

The point of this post? I don’t really know if there is one.

And yes, I am writing this from bed. 🙂

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Untethered

I wake up. It’s 9 am and I see the sun shining through my window and feel the warmth touching my face. It feels so nice to wake up by my internal clock, and not by an obnoxiously loud beeping alarm. I feel refreshed. Not too sleepy to where I cannot keep awake. So I comfortably and easily swing my legs over the side of my bed and stretch. My body elongates and I feel nothing but gratitude; for my wrinkles, curves, fat, muscles, skin, freckles, scars. My imperfections do not bother me. In fact, I embrace each and every one of them. I acknowledge that the parts of me that were once was hated and abused are perfect in their own way. I wrap my arms around myself giving my body a gentle hug. Because all of these years I know that’s what it always wanted. Its what it always needed.

I make a cup of coffee and watch the creamy almond milk turn my coffee to a delicious warm brown. I pour just the right amount of sugar. I eat my breakfast and plop onto the chair at my kitchen table, opening up my laptop. I enjoy scrolling through and reading all my favorite blogs. I soak up the beautiful and wise words of others. As I read, I take bits and pieces from each post, retaining the information at my own pace and in my own time.

I get ready for the day – brush my teeth and wash my face, and leave my hair as is. It is messy and curly and tangly, but I like it that way. Its my natural hair and I do not mind it. Actually, I kind of like it. I take one glance at myself in the mirror, and part from it until the evening. I don’t need it today.

I ride my bike through country and down by the lake, taking the winding trails for hours. I feel the wind blow through my hair. I know it’s got to be changing the way my hair looked from the morning, maybe even messing it up. But I do not care. I am too busy enjoying the moment. I feel alive. I feel free. I tilt my head up and squint at the sun, feeling the rays penetrate through my pores.

When I finally arrive back home, I take out a juicy red apple and open a fresh jar of creamy almond butter. It makes for the best snack, and I feel satisfied knowing I filled my body with some good nutrients.

I read a new book. A memoir, a collection of poetry, or the newest fiction – anything that can take me into a different realm or world for a while. It makes me think about life; the struggles, the beauty, love and loss. I laugh and cry – I feel each emotion as I venture through the pages, appreciating every word.

It is now 9 pm. I had my dinner. I spent some time with family and with my boyfriend. We laughed until tears were rolling down our cheeks. My boyfriend is so funny – we always have such a fun time together. He knows how to make me laugh, and because of him I learned that life is meant to be enjoyed. I now know that I must live my life to the fullest and embrace it all. Feelings are a part of life, not something to be feared.

I climb into my bed and feel my head on the cool pillow. Snuggled in warm blankets, I lay there and talk to God. I thank Him for such a beautiful day. I thank Him for giving me a second chance. I thank Him for all he has blessed me with, despite the things I have done. Tears begin to fill my eyes because I am overwhelmed with emotion; I feel His love pouring over me, and I am still. Peacefully, I close my eyes and fall asleep.

The Real Answer to the Question “Are You Feeling Better?” When Living With Chronic Illness

“Are you feeling better?”

A question that makes me cringe. It’s an awkward and uncomfortable question that, unfortunately, is asked frequently by friends and family members of those who are chronically ill.

I personally do not get upset with the people who ask me this. After all, if one does not experience chronic illness first hand, can we really expect them to understand? However, I was asked this question by classmates of mine for the first time, and I have to say, it was one of the most uncomfortable encounters I have had with my classmates to date.

And I thought and thought about this.

Why is that question so darn awkward to answer? Why does it make me stutter over my words, not knowing what to say, almost as if I were a deer in headlights?

Because I don’t want to tell them the truth. And the truth is, no I am not feeling any better. Sure, I may not be feeling as bad as I was that day I missed class, but I am never 100%. My battery is never fully charged. But that’s just how I live. In fact, I don’t even know if I really remember what normal feels like. This is my new normal. I live with this fatigue every single day. Little things make me tired. Doing nothing makes me even more tired. Sleeping does not cure the fatigue. In fact, it makes it that much harder to get out of bed. My heart rate jumps when I stand, I get dizzy, my legs feel like spaghetti noodles. I have learned to live with it, and I continue to learn how to best manage each day. And you wouldn’t guess that I struggle like this, because I show up with (most of the time) a smile on my face. I talk and engage in conversation. I laugh. I participate. But the effort it takes to just do these things is more than you know. I push myself.

Of course, this is too much to say in brief conversation. Does anyone really want to hear the truth anyway? Even if they did, the effort it takes to verbalize all of this is too great. So, I am writing it down. I am much more cohesive with my thoughts when I write than when I speak. Words seem to escape me when I try to talk, yet another symptom of my chronic illnesses.

So, to truthfully answer everyone’s questions that come my way about if I’m feeling any better, the answer will be no. The likelihood that I will actually say this is slim to none. You can expect a big old “yes” to come out of my mouth, but in case your wondering, that’s not accurate. It’s just easier because it uses less energy, and diffuses the awkwardness from the situation. I appreciate the thoughts and intentions behind this question, as I believe they are usually good ones. I just have not figured out how to live like a healthy person in a sick body, and I don’t know if I ever will.

 

An Open Letter to the Doctor Who Believed Me

Dear doctor,

I am so glad that I was able to get an appointment with you. I am not sure you are aware of the countless doctors I have been to that have not known what to do with me, or how to help (if they even believed me at all). I am not sure you are aware of the tears I have shed due to doctors thinking that my diagnosis is not valid. I have let other doctor’s beliefs and personal opinions effect me so deeply that I started questioning myself and my own sanity. I am not sure you know what that is like, but I do know that you can and want to help. I know that you are the right doctor for me, because you aren’t afraid of me and the complexities that come with my illnesses. You are not invalidating my experiences, and you are not brushing off my symptoms. You are not putting your two-sense in where it does not belong. You are not questioning and doubting my diagnosis. You are not giving up.

I have had many doctors dismiss me and my struggles. I have had many doctors make comments when they do not truly know or understand my illness. I have heard “that won’t really affect you unless you become pregnant.” I have also heard “that diagnosis is likely not valid. You probably received a false positive.” Then there is my personal favorite, “you aren’t severe enough. We can’t help you.”

Okay.

During my appointment, you looked me in the eye and held up the results from my muscle biopsy stating: “THIS is real. This is not in your head. You did not make this up. This stuff is real.” I don’t know if you realize just how grateful I was for that moment of genuine reassurance. Yes, the doctor who diagnosed me told me it was real, but when you have subsequent doctors telling you that you are fine, that it is no big deal, or that you are making it up, you start to believe it. At that moment, I believed you. I believed in the doctor who diagnosed me. I believed in myself. I heard what I needed to hear and said in the right way. Thank you for spending over an hour with me, explaining my illness in a way that I could understand. Because let’s face it, a lot of it has gone over my head. I know the very basics and that is about it. Thank you for taking the time to show me results that I never saw. Thank you for being thorough, and for embracing patients who have been seen and labeled as a challenge. We need more doctors who do just that.

Sincerely,

a hopeful patient