Monday, June 6, 2016

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When Mental Health and Physical Health Collide

(Can this pug just become Young and Sick's mascot? Okay, thanks, this is a thing that is happening.)

Having both a mental illness and a chronic illness is kind of like this:

On your good days, you manage to be okay both mentally and physically. On your worst days, well... you're Leslie Knope falling head first into a pit. (If you haven't seen Parks and Recreation, please do so now.)

It can be so frustrating because when you finally have a good day without pain or a good day without anxiety, then your other illness is just waiting in the wings, ready to mess you up.

Additionally, both of them play into each other. Was your anxiety caused by your sky-high pain levels, or was your crushing headache caused by the anxiety constricting your lungs and making you worry about everything? Who really knows? If you're depressed, sometimes you get even more depressed because your joints ache and everything hurts, even your soul.

It's a hard thing to battle both your body and your mind.

Sometimes, it's hard to keep your head above the water. I know this. I get it. Mental illness is hard, period, with or without a chronic illness. It just plain sucks. Our bodies and minds can sometimes be a prison, turning against us, and it's hard. And I wish I had more answers, but I do know this:

Sometimes it's okay if the only thing you did today was breathe.

So, when your body and your mind decide to gang up on you, have patience with yourself. Remember: it's okay to not be okay. Give yourself grace to not be good, to be upset, to be in pain. Focus on rest and recovery. Take care of yourself, be good to yourself. Keep breathing. Somehow, it's going to be okay. I promise.

Continue reading When Mental Health and Physical Health Collide

Saturday, May 28, 2016

Instagram Is Not my Real Life: The Trouble with Chronic Illness & Social Media

Instagram is not my real life.

I know, I know. You're all shocked to hear this. You mean my life isn't contained in those pixelated images on my Instagram feed?

No, it is not. (Though I will admit I spend a ton of time living vicariously on the internet due in part to my chronic illness, but I digress.)

When I first heard about Instagram, it seemed tailor-made for me. I've always loved taking pictures (my embarrassing photography blog from 2011 will back me up on this). To have an app where I could easily share photos with my friends--an app made only to share photos, no less--was a big deal.

So as soon as I got a mobile device in 2014, one of the first things I did was get an Instagram account.

This is one of the first Instagram photos I ever took. Yes, it looks like I was on an epic quest, but I was actually on the way home from my OBGYN.

My Instagram photos are often of the people and places in my life. And I really like them! I love sharing them with everyone! I love looking back on the memories. It's become a really beautiful collage of the highlights of my life.

But that's just it: it's just the highlights.

It doesn't show the reality of living with my illness(es).

When I have a headache, you can bet that I will probably not be posting on Instagram. I will be laying down with my eyes closed.

(Except for this one Instagram photo where I was icing my head and had to document how glamorous I looked.)

When I post a picture of something fun I did, you can bet that I probably went home and had some repercussions--whether it's pain, fatigue, or a migraine (oh joy).

This picture is lovely, but in order to get closer to the ocean, I had to go up and down a staircase of death.

When you sense very strongly that a photo of mine was taken through a car window, it's 99.9% likely that it was because my hips suck and get mad at me when I walk (it's a personal problem between me and them; don't worry, we're trying to work it out).

(*Train voice* This is not a drive byyyyyy...)

When I post a picture of the same exact tree, you can bet I didn't have energy to get out that day and was just trying to appreciate the beauty I could see from my window.

When I post the 400th picture of my cat or my dog, well... that has literally nothing to do with my chronic illness. I just love my animals.

Despite my chronic pain, I still have so many good moments, and I'm grateful Instagram is a place to share them. However, it is just a limited view into my human existence. A lot of it falls between the cracks in the midst of all the shiny pictures of scenery and animals (oh, and the selfies, most of which I actually prepare for and only take on my "good" days).

So posed, such wow.

Vulnerability is something that I am still learning, and being open and honest on Instagram (and all social media) is something I hope to improve on in the future (even though it's TERRIFYING AS HECK). However, no matter how "vulnerable" or "authentic" we may be, not everything will transfer from our real life to the screen, though we may try really hard. It's simply not possible to show every single moment of your life on the internet.

This is why comparing our Instagram account to someone else's isn't a good idea. (I'm preaching to the choir here, by the way.) It's a trap anyone can fall into, chronic illness or not, and it's a dangerous one. The world of social media is amazing, but so much can happen behind the screen that we don't know about. Assuming that someone's life is perfect, spoonie or not-spoonie, isn't advisable. It will just lead to heartache.

So, if you find yourself comparing your Instagram feed to your best friend's or you feel bad for posting the same tree for the 5th time, just remember: there's a life beyond Instagram that all of us are living. Post all the photos you'd like. Be as vulnerable or as vague as you'd like to be. Do whatever you want! Just remember: Instagram is not your real life, and it doesn't define you. After all, your amazing, messy, wonderful, flawed, spectacular humanity cannot be contained in a measly cell phone app.

Continue reading Instagram Is Not my Real Life: The Trouble with Chronic Illness & Social Media

Wednesday, March 23, 2016

Spoonie Fashion or the Lack Thereof: 4 Reasons Why We May Be Wearing Sweatpants

(To be honest, I want to be this pug.)

I've always been a casual, jeans-and-t-shirt kind of gal, but in the past four years, my fashion style has become based solely around what I'm most comfortable wearing. Sometimes that makes me feel insecure about myself, and I know a lot of spoonies might feel the same way. It took me forever to realize that I'm not a terrible person because of this--I just have a chronic illness. So, if you also wear sweatpants, this post is for you. Also, if you happen to see me, and I happen to be wearing sweatpants, here is why.

1. Comfort

The number one reason is comfort. I have headaches, overall body pain, and fatigue on a regular basis. For me, I've chosen to prioritize my comfort above all else. Jeans can be constricting and uncomfortable, so I mostly wear cotton tees, hoodies, or flannels with yoga pants, cotton shorts, or sweatpants. I often need to lay down on my bad days, so wearing comfy things helps me be able to do that easily. When I'm in a lot of pain, the last thing I want to do is worry about the fabric on my body, so my default is always comfort.

2. Lack of spoons

I only have a certain amount of spoons, so I focus my energy on the important things: putting on deodorant, brushing my hair, and wearing a bra. If I spend a bunch of time getting myself all dressed up, it can wear me out faster, so on most days, I keep things simple. It's not because I don't like to look pretty; it's just because most days I need to conserve my energy for other things.

3. I'm not going out that day

Currently, I spend a lot of time at home, and because of that, I usually keep things casual. I will absolutely dress up if I'm going to a formal event, and I do like dressing up on occasion. But for just hanging out at home, you can probably find me in sweatpants and a graphic t-shirt (and sometimes even pink pajama pants).

4. Shopping is hard

This is a universal problem: a lot of people have trouble finding clothes to fit their body type. I'm too short for most pants and I'm curvy, so it's difficult to find clothes that fit right on the first try. But as a spoonie, shopping is exhausting. It takes a lot of energy, especially to try on clothes, and I get worn out really quickly. It's a lot easier to just grab some comfy cotton clothing and call it a day.

To sum up this post, I'm a casual kind of gal, which is only exacerbated by my health problems. Would my fashion style be different if I didn't have a chronic illness? Maybe, maybe not. But all I know is, sweatpants are the greatest thing in the world.

To all my fellow spoonies who wear comfy clothes: I see you, and you're not alone.
What's your spoonie fashion style?

Continue reading Spoonie Fashion or the Lack Thereof: 4 Reasons Why We May Be Wearing Sweatpants

Saturday, February 27, 2016

Where Have I Been?

(I try to be serious, but I just fail.)

The awkward thing about being a spoonie who is running a blog for fellow spoonies is that sometimes I fall prey to being a spoonie. Which is to say that the reason I haven't been blogging here is because a lot of things happened, including not feeling well. (Ironic.)

Though I seem to be in a good patch with my fibro, my health isn't perfect (OBVIOUSLY since I run this blog). Thus, I've been having some down days where I have a headache or brain fog or overall body pain. Now, there have been a lot of days where I feel okay. The only thing is, I don't have as many spoons as I would like. And between running a website and helping babysit, I've been a bit low on spoons. Unfortunately, that means a lot of my more personal projects have fallen by the wayside. (Don't feel too bad; even my novels, which are my life-blood, have been neglected too.)

I guess the point of this post is to say, I'm low on spoons right now... and I'm really sorry. I'll soon be back posting on this blog. It's nothing personal, and I haven't forgotten about you, I promise.

In the meantime, let me know in the comments how you've been.

Love and hugs,

Continue reading Where Have I Been?

Friday, February 5, 2016

The Kindest Gifts This Spoonie Ever Received

By Alyssa Hollingsworth

I have measured out my life with coffee spoons--which is a poetic way of saying, I am a spoonie on several levels: Rheumatoid Arthritis, Raynaud's Syndrome, Hashimoto Hypothyroid, Type 1 Diabetes, Celiac, and gastroparesis. It all started when I was 17, and those last three diagnoses came in this past year (I’m 25 now).

Being a spoonie is straight-up exhausting to the tune of I-don’t-even-want-to-breathe, need-to-take-a-break-while-buttering-toast, it-was-a-bad-idea-to-scrape-this-ice-off-my-car. Sometimes it can be hard to make and maintain relationships, because it takes so many spoons to get out of bed, walk the dog, and go to work or school. There just aren’t a lot of spoons left for coffee or group activities or noise in general.

Throughout the years, though, relationships have boomeranged back time and again to encourage me in surprising ways. These are five gifts that have made me smiled on hard days, gotten me back on my feet, or just plain kept me going.

A Listening Ear

Early in my junior year of college, my finger joints started to fall apart and I had three different hand surgeries in just about as many months. I worked in our Public Relations department with this guy named Alan. Picture Santa as a Georgian photographer, and you’ve got Alan. He would stop by my desk every day and ask how I was doing. He listened to my complaints, remembered when I had my next appointment, and on particularly bad days he would sneak into the president’s office to steal me a soda.

When he asked, he really wanted to know. Not a lot of people are like that.

Often the common denominator among these rare birds is a personal experience with illness. One of my best friends had cancer in the past, and we bond over similar medical tests and the difficulties of explaining our experiences to non-sick people. My old roommate (Kyley)’s dad had cancer, too, and long-term complications following his treatment. Even my current roommate gets it because she had swine flu!

Every time I encounter someone who genuinely wants to know how I’m doing, it’s a blessing.

Every single one of the following gifts resulted directly from someone really listening.

Handwritten Notes

Letters that come out of the blue have long been a love language of mine. I collect them, and the ones that are particularly timely or kind go straight to the corkboard in my room.

Once, I was feeling so terrible that I took heavy pain medication in the middle of the day and crawled into my bed to sleep. When I woke up, I found a sticky note from my roommate (Kyley) attached to my pillow. It just said, “I’ve gone to the library so I don’t disturb you. I’m sorry you feel so terrible. I hope it gets better this evening.”

Do I still have that sticky note? Yes, yes I do. Because I am a hoarder.

But also because it meant a lot to me.

Here’s an insider secret: Spoonies feel like they’re a burden.

We feel like a burden at our jobs because we have so many doctors’ appointments. Or like a burden to friends because we have to cancel on stuff last-minute. Or like a burden on family because of finances, dietary inconveniences, or lifestyle changes everyone has to carry.

My roommate’s note expressed her empathy, concern, and good wishes. It alleviated any guilt I might have had about “forcing” her to be accommodating. It validated how I felt and offered encouragement.

I love me some handwritten notes.

Living Aids

In an email with some writing buddies, I happened to mention that I was having trouble reading. My hands hurt if I read too long, because I couldn’t hold the book open. Then on Valentine’s Day, I had a package from one of them--and inside was a portable book holder (like this).

I’ve also had friends send me jar openers and key turners, stepping stools and fun baggies for my diabetes supplies. Most recently, my current roommate came home with a cute lunch bag after trying (and failing) to find anything that met my dietary requirements at the place she was buying dinner. These sorts of living aids hit the sweet spot between practical and thoughtful.

They normally mean that someone’s been listening to my needs, and they take it a step further by providing some relief.

Now when I’m having a hard time opening a book or when I need to get out some insulin, the aids I use remind me of the friends and family who stepped up to help.

Fingerless Gloves

Rheumatoid Arthritis means that my fingers are very sensitive--whether to the dreaded firm handshake or opening a door. So one day when I went the first day of class and a boy accidentally closed the building door on my hand, I almost keeled over in the hallway and cried. (Instead I tried to comfort him and also still cried. This isn’t just a gender thing about chicks and guys and whatever. Spoonies spend a lot of time comforting other people.) I joked about it on Facebook and for the most part went on to forget the incident.

But a few months later, I received an unexpected package from one of my Facebook friends. Inside were soft, plushy, hand-knitted fingerless gloves. The note said, “To give you some cushioning next time someone tries to close the door on you!” 

These gloves are still my all-time favorite. I wear them frequently, and especially when I’m feeling extra fragile. Plus they are so soft.

A Surprise Party/Dinner

This is by the far the most specific, wonderful gift I’ve received.

It’s junior year of college and tomorrow I’m going to find out if I have to have a third hand surgery. When my friend Kyley asks how I’m feeling about it, I tell her I don’t know. I’ll just have to see what happens.

She tells me she has a paper she’d like me to proof, and we make plans to have her bring it over to my room that evening before dinner. I wait for her in my dorm later, trying my best not to think about the surgery.

There’s a knock. When I look outside, Kyley and another friend are standing there, arms ladened with food and drinks. Turns out, the paper was a trick--they’d been planning this all along.

We make a picnic out in the fields by my dorm and eat together while the sun sets and the deer graze in the grass. (No lie. My college has an overpopulation of deer.) I show them some of the moves from my dance improv class and we laugh about campus controversies.

That night, I go to bed grinning instead of worried.

There are very few times in my life that are pain-free or unanxious. That evening was one of them.

Alyssa was born in small town Milton, Florida, but life as a roving military kid soon mellowed her (unintelligibly strong) Southern accent. Wanderlust is in her blood, and she’s always waiting for the wind to change. Stories remain her constant. She writes about writing, chronic illness, and travel adventures on her blog. You can also find her on Twitter and Pinterest.
Continue reading The Kindest Gifts This Spoonie Ever Received

Monday, February 1, 2016

The Thing About Sleep

"When you feel so tired but you can't sleep..."
- Fix You by Coldplay

I mean, did Chris Martin nail insomnia or what?

One of the big things about having fibromyalgia (or CFS, Lupus, or anything in that family) is that insomnia is a major symptom. Sometimes we can't get to sleep for no reason. Other times we do sleep, but we wake up feeling even more exhausted. (Yes. I know. It's not fair. Also, the irony is that I was falling asleep while working on this post a couple of days ago.)

For a while, my sleep schedule has been pretty good. I go to bed around 1 or 2 am and wake up at 11 am. Yes, I know that this isn't a typical sleep schedule for most people, but trust me, this is one of the best sleep schedules I have ever been on.

For about a year in 2012, I was going to bed in the early morning and waking up in the evening. It was about 7 am to 5 pm. Some days I woke up at midnight. The reason for this was unknown, but my sleep schedule just couldn't regulate itself. (This is why waking up at 11 am is a blessing. While it's late in the morning, it's so much better than things used to be.)

Sleep is tricky for those of us with chronic illness or any type of insomnia. Sometimes we can't sleep. Sometimes we wake up too early. Sometimes it's impossible to regulate our sleep cycle. The symptoms manifest differently from person to person, but for everyone, insomnia makes sleep really, really hard.

There are not a lot of reasons for this, either--none that I know of, anyway. I've never nailed down what causes my insomnia. Sometimes it's really bad. Sometimes it's nonexistent. I've had periods of time where I get in bed and can fall asleep instantly (this is what's been happening lately). I've also had sleep be elusive and practically nonexistent. I've stayed awake for 24 hours straight (NOT RECOMMENDED). And this past weekend, I accidentally missed my meds and ended up laying awake for 5 hours and only sleeping 3 before waking up with a splitting headache. (If my friends are reading this and I didn't talk to you this weekend, this is why. This is also why I didn't post on Friday; I've been feeling horrible.)

To sum it all up, insomnia is just kind of a sucky and annoying thing to deal with.

Leave my door open just a crack
'Cause I feel like such an insomniac
Why do I tire of counting sheep?
When I'm far too tired to fall asleep

- Fireflies by Owl City

If your friend has insomnia and/or chronic illness, please remember...

  • Sleep is hard for us. If we aren't available at regular hours, it's probably because we're sleeping.
  • While it's nice to stay up late and sleep in sometimes, it's not nice to have to deal with the irregular sleep cycles and the never-ending battle to get some sleep. If I had the choice, I'd wake up earlier than I do.
  • Try to support your friend the best you can, understand when they need to go to sleep (no matter what time it is), and be there for them if they need you.
  • Insomnia isn't really something we can control. And trust me, I wish we could!
If you're dealing with insomnia and/or chronic illness, please remember...
  • I feel you. It's awful.
  • Sleep when you can. I know it's really hard to put things down and take the time to rest, but it's important for your health that you do. (Trust me, I'm still learning this.)
  • Treat yourself to a fuzzy blanket. Even if it doesn't help, at least you have something warm and soft to hold onto.
  • Don't be afraid of sleeping with stuffed animals, either.
  • Try white noise. I have a white noise app on my phone, and it's calming to be able to listen to a fake fire crackling or simulated rain.
  • You're not alone in this, and I'm always around to talk. (Well, except when I'm sleeping.)

Do you have insomnia? What are your experiences with it like? Have you found any helpful things that help you sleep?

(Disclaimer: This post is based on my own experiences and doesn't reflect the experience of every person with chronic illness or insomnia. Please feel free to leave your experiences with insomnia in the comments below!)

P.S. - To help build community amongst fellow spoonies, Young and Sick now has a Facebook group!
Continue reading The Thing About Sleep

Friday, January 22, 2016

The Awkward Stage: When Your Symptoms Are Unexplained and Undiagnosed

So, we've already talked about being a spoonie. But what if you don't have a diagnosis?

I've been there. And it's awful.

For years, I suffered from random headaches. We had no idea where they came from. We thought it was my hair weighing my head down, so I cut it all off. We thought it was corn syrup, so I quit eating that. We tried solution after solution, but nothing seemed to help. Even after cutting my hair and avoiding food additives, I still got headaches.

In addition, there were all sorts of random symptoms. Dizziness and nausea. Exhaustion. Overstimulation. I couldn't seem to exert myself at all. Even as a little kid, when we went to an event, I'd come home, cry, and conk out.

If you know the symptoms of fibromyalgia, it probably seems obvious to you what I had. And in 2010, we finally figured that out, too. But before that, there was a long waiting period. And quite honestly, it sucked.

Not knowing what's wrong with you is one of the hardest things to go through. There was a lot of fear--what if I was dying? Why was I so different from all of my peers? Why did my head pound like it was a ticking time bomb? In a way, that's exactly what my body felt like: a ticking time bomb. What if I never got diagnosed? What if we ran out of time? I felt like something was seriously wrong with me, and not knowing what it was ate away with me.

Finding a diagnosis isn't easy when even doctors can't figure out what's wrong with you. I had MRIs. I saw so many doctors. Some of them were helpful. Some of them were not, and some of them were just plain rude. Everything about my body was a mystery--to both myself and the people who I assumed would be able to tell me what was wrong.

It was stressful. It was frustrating. At times, it was downright heartbreaking.

In conclusion, not having a diagnosis just downright sucks. I don't have any easy answers for how to handle this. It's so hard. All I can say is, I'm sorry you're going through this. If you need to talk, let me know. Please feel free to leave a comment or email me. I'd love to listen.

Continue reading The Awkward Stage: When Your Symptoms Are Unexplained and Undiagnosed