Dealing with Depression

When you’re ill, it’s easy to get depressed. You’re not on track like your friends, your body is attacking you at every turn, and nobody really seems to understand.

When it’s real, clinical depression, you need to get help. I’ve been there! Counseling and properly medicating my pain got me back to a more normal mindset- but here’s the thing. I still fight depression. Daily.

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Yep. That’s right. Me, Miss Positive Blogger, fights depression every single moment of every single day. Sometimes it’s the pervasive empty kind, and other times it’s just an overwhelming sad. So far, my best line of defense has been overwhelming positivity. I’ve done #100HappyDays, I’ve done the Seven Day Positivity Challenge, and I’ve read The Happiness Project. When I was sunk into my deep dark pit, I thought everyone who said “fake it til you make it” was a lying jerk who needed to leave me alone. Now? I cling to every little happy moment I can get.

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Sometimes, like when I get glutened or have an especially bad pain day, faking it isn’t enough. Those are the days I have to be gentle with myself. I drink hot chocolate and vanilla coke. I buy a large milkshake without beating myself up about it. I spend extra cuddle time with the kittens, even though there’s laundry to be done and dishes to be washed. I lay in the hammock and watch Minnie chase bugs around the yard. I take a million selfies and delete all but one.

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After I self-care crawl back out of a slump, I like to keep busy. Whether that means painting in the floor, calling up a friend, or binging on video games while my husband sleeps at night, I do whatever it takes to keep my mind active. This is also the time I take special care of my body, because a healthy mind needs my body as nourished as possible (especially since I have some nutritional problems from my celiac.) So the post-slump peak is full of fresh juices and cute, vegan salad bowls.

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But the most important thing about tackling my depression is being able to reach out. Sometimes, all the self care in the world won’t be enough to tackle that bad brain. In those times, I have to know when to call in a backup team. Whether it’s talking it out with my mom, crying with my husband and best friend, or actually sucking up my pride and seeing my counselor early, knowing when to reach out is a huge step in fighting depression. Reaching out and getting help can mean the difference between a bump in the road and digging a depression well from which you refuse to emerge.

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If you’re anything like me, it’s scary to reach out. You don’t want to admit you’re sliding back into depression. After all, everyone has fifteen bad days in a row, right?

Well, some people might, but you don’t have to. If you’re struggling, please take care of yourself and reach out. If you’re not struggling, reach out to friends and family who are. You’ve all seen the “depression hurts” commercials. It does. But we can all do our part to make it hurt less.

If you feel like you can’t reach out to someone, I am happy to connect you with resources!

Being A Spoonie

I’ve been chronically ill my whole life, but I’ve only been a spoonie for about two years. If you’re a healthy person, this may sound like a lot of gibberish to you, but don’t worry. There’s a perfectly reasonable explanation for my obsession with kitchenware.

You see, a spoonie is simply a person with a chronic illness or disability that identifies with The Spoon Theory, written by Christine Miserandino about her experience with lupus. Since a lot of disabled or chronically ill people have similar experiences, her way to explain being ill rung true with a lot of us.

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Being a spoonie is more than just being ill though. When you take up the spoonie label, a whole new world opens up to your sick self. Spoonies are, as a friend once said, “the coolest group of people you never want to be a part of.” And it’s true. Being a spoonie means having a support group, both across the internet and many times in real life, that’s available at any time and has experienced almost everything you’re going to go through.

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Other than community, being a spoonie means having an easy way to explain your chronic illness to healthy people. Because seriously, healthy people, we love you- but sometimes you just don’t get it!

When I’m searching for a way to make my husband or friends understand, I can send them a link to the spoon theory, paraphrase, or send them, phrase in hand, to the almighty internet. Sure, the spoon theory doesn’t work perfectly for all aspects of my illness, but it’s a good place to start explaining.

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There’s a lot of great reasons to be a spoonie- last but not least because it’s a lot easier than typing “chronically ill” all the time- but there’s more to it than that. Being a spoonie has made me more friends than any other movement or community I’ve joined. Being a spoonie has helped me accept my illnesses, and work with them instead of constantly fighting to the brink of exhaustion. Being a spoonie has given me the drive to advocate and educate about my rare disease. I’ve been able to help newly ill and newly diagnosed people find their way into the spoonie world.

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This week is Invisible Illness Awareness Week. I’m pretty aware of my illnesses, but there are a lot of people who aren’t. Awareness is great! It helps get us money and research for the illnesses we fight. It helps other people recognize their symptoms and get a correct diagnosis that otherwise could take years. This week, if you’re a spoonie, I challenge you to share your story. If you’re not, I challenge you to educate yourself about the unique challenges the chronically, invisibly ill face. And to all of you, I challenge you to be kind to yourself this week. You deserve it.

So When Am I Having Kids?

When you announce your engagement, everyone’s mind turns to one thing, and one thing only. Sure, you’ll get a few questions about your registry, the wedding, and how he proposed, but most people are dying to ask the bigger question. So, when are you having kids?

Not only is it a loaded question, but depending on your answer, it’s an awkward conversation for everyone involved. When I tell people I’m not having kids, suddenly the peaceful conversation becomes an interrogation. I usually mumble something about not being ready for that step and extricate myself from the situation. But what I wish I could say is…

10. I Can Barely Even Dress Myself.

Look, when you have kids you have to know how to dress them. Sure, sometimes I pull out all the stops and look stylish, but more often than not I’m inappropriately dressed for the weather.

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It’s 90 degrees outside, but Mother Nature can’t tell me what to do. I’m going to wear pants until I pass out! Which I will because my body sucks at temperature regulation.

9. I Hate Homework.

I’m pretty sure part of having a kid is making sure they turn their homework in on time. Considering that I made it several years of school without turning in a single piece of work actually done at home, I’m not a great role model for this.

8. The Dog Hates Children.

He was here first, kids…

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He’s old and set in his ways. He likes to bite children. Children don’t like to be bitten. It’s not a winning combination.

7. Puke Grosses Me Out.

I still can’t see someone puke without becoming a vomiting mess myself. I’ve been told it’s different when it’s your own kid, but I’m not exactly ready to test that hypothesis.

6. I Eat Like a Toddler.

How am I supposed to introduce my kids to a healthy diet? Sure, I don’t eat many starches and I’ve tried just about every trendy diet for stomach issues and autoimmune disorders ever, but when it comes down to it, I’m still the pre-teen that literally caused an oven explosion.

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Last time I was left in charge of children, I fed them junk food until they told their parents that they wanted to come live with me. There’s something about a steady diet of macaroni, icees, and cupcakes that wins a child’s heart. However, it also winds them up and leaves them crashing from simple sugars, so I appreciate the ability to give them back to their parents.

6. I Suck at Being Encouraging.

One of the best things about my parents is the way they always encouraged me to follow my dreams, even when my dreams were kind of silly. For example, when I was in preschool and wanted to be a garbage collector, my parents told me that I would be the best garbage collector ever.

Now, encouraging your kids is so important. Seriously! Which is a good reason for me not to try to raise any. I try, I really do. But when people want encouragement, my brain freezes. I wind up patting people on the back awkwardly and nodding in what I hope is a sympathetic manner. Even if I don’t need to be sympathetic.

5. I’m Scared I’ll Mess Up.

Babies are so fragile. Especially if they’re birthed by someone who has a hereditary genetic disorder. Just thinking about all the injuries my brother and I had as children, despite being closely watched and practically wrapped in bubble wrap, scares me.

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There’s so much that could go wrong, and as I learned with Fuzzy, if anything did go wrong, even the smallest thing, it would crush me. I’m the type of person who takes her cats for massages when they’re stressed. Can you imagine me as a parent??

4. I’m a Terrible Disciplinarian.

I’ve worked with kids several times, and let me tell you, they love me. You wanna know why they love me? Because I can’t bring myself to punish them. Sure, I can sometimes ward off bad behavior with my scary “Teacher Face,” which I inherited from my mom. But if pre-emptive measures don’t work? I got nothing.

3. I Can’t Even Have Them.

I’m a little bitter about this. But I have come to terms with it, using humor to hide any anger I may still have about the issues. However, the truth of the matter is, between my reproductive issues and my Ehlers Danlos, I really can’t have kids.

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My family has had a lot of issues with having babies. My mom and grandma struggled to have kids and they’ve passed their issues down. It’s not exactly the kind of information I pass around to people casually asking about my life plan. But it’s one of the most serious reasons I’m not having kids.

2. Medical Bills.

Having kids is expensive. So are the thousands of medical bills I rack up every year. When I think of all the medical bills I would rack up while trying to have kids, it makes me shudder. When I think about the medical bills my kids would rack up if I passed my illness down? That’s just sad.

1. I’m Too Sick.

There are some amazing spoonie mamas out there. I respect and admire you so much! You work so hard to take care of both your kids and your health. It’s like having two full time jobs you can never get a break from. You’re practically Super Mom!

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As for me? Until I get some proper pain management and a little help for the constant dizziness, I don’t have the resources to give a child what they deserve. Add in the guilt I would feel if I passed any of my illnesses down to my kid, and it’s just not the right choice for me and my husband.

That doesn’t mean it’s not right for everyone, and please don’t be like some people I’ve encountered who assume I’m a kid-hating curmudgeon! Just think before the next time you ask someone when they’re planning on having kids. Unless you know them well, you never know what kind of can of worms you are opening!

Dating While Sick!

I get asked for relationship advice a lot. I guess that’s par for the course, as my husband and I were the first couple in our group to get engaged, move in together, and get married.

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Interestingly, I also get asked a lot for dating and relationship advice by other spoonies. I guess that makes sense, too, since I managed to snag my adorable husband while being blatantly, unhideably sick.

It didn’t just happen, though. It took a lot of work and self confidence to get to the point where I was able to date as a sick person. One mistake I had made in earlier relationships, before a virus made my illnesses unable to be disguised, was not disclosing my illness at the beginning of the relationship.

I know, you’re thinking, “but if I tell them I’m sick, it will scare them off!” But really, if it does, is that the kind of person- male or female- that you want to be with? When I didn’t disclose that I was ill, I spent a lot of time trying to hide my symptoms. “Faking well” put a lot of strain on my relationship, and on my body as well. As the stress of faking well got to me, my symptoms got worse. I started making excuses for not being able to talk or hang out, and they took the excuses to mean that I was bored of them.

In the end, I had to break off several relationships because people couldn’t accommodate my “sudden” illness or thought I was faking. It wasn’t healthy for me or for the poor boys I was dating!

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Other than disclosure, I think it’s especially important for spoonies not to throw everything they have into a relationship. It was always tempting for me, having lost so many friends and hobbies, to become too into a relationship and lose my sense of self.

In illness, it’s important to maintain your sense of self. Because your body has betrayed you, you might feel- like I did- that you’re unattractive, unworthy of love, and uninteresting. Thanks to these misconceptions about myself, I found myself clinging to any scraps of attention someone would throw to me. That’s not a healthy way to have a relationship, and clinging to scraps of love and affection can make you feel even worse about yourself.

Once I started going to counseling, accepting my illness and my body, and finding things I could still do that I was interested in, my relationships thrived. I made friends online and in person who were understanding, and I met my now husband. Because I had a life separate from my husband, our relationship didn’t feel rushed or forced.

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Of course, your mileage may vary. Everyone is different in their relationships and their personalities. However, these were important things for me when I was dating!

Now, I’m determined to make our marriage last. The statistics for marriages where one partner is chronically ill are grim, but they’re just that: statistics. Although they may show a trend, they’re not a death sentence for my own marriage. After all, this may seem impossible, but so did dating!

Illness, Funerals, and Family.

Like me, my husband’s grandmother was chronically ill. We bonded over the treatments we had tried, medications we had hated, and the general awesome realization that us spoonies get when we find someone else who knows what we’re going through.

When we got the call last Friday that J’s grandma had two hours to two days to live, we got out of bed, packed our bags, and headed out. I didn’t do a very good job packing because I’m still fighting the cymbalta sleeps, and our car had issues because neither of us had thought to check the coolant levels before we headed out. Still, we got there in time to talk with his grandma before she fell asleep and never woke up.

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So, here’s the thing. I know a lot of times us chronically ill people get into a pretty negative mindset, and we have every right to. But what happens when we have to be strong, not for ourselves for once, but for someone we care about?

This week I found that out. I survived off snack foods because I didn’t want to bother anyone who was grieving about the fact that I couldn’t eat their comfort foods. I played with kids and distracted them to the point that I literally thought I was going to fall where I stood.

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I hugged, I passed out programs, braided hair, served food, and in the end? I think J’s grandma would have been proud of me. Sure, I’m not ready to raise four kids, get a master’s degree, and teach college level history courses. In fact, I’ve spent the last two days in bed because I physically exhausted myself and only kept going through sheer stubbornness. (Stubbornness and a lot of ibuprofen. Too much ibuprofen. My stomach is killing me now. Don’t take as much ibuprofen as I did. Ever.)

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Anyway. I guess the point is, sometimes I’m guilty of getting into an unhealthy mindset. The “I’m sick, I can’t do this, I won’t try, I can be as cranky as I like because I’m sick forever.” I’m not saying everyone gets into this mindset, or even most people, but I know that I do.

So I’m going to work harder on being positive, helping out my husband emotionally, and being emotionally available for those I love. No more “a headache? Wait until you’ve had a three week migraine and THEN get back to me.” No more “Wah Wah you have a cold. I’ve popped my knee out of socket three times today. Who has it worse?”

Relationships take work on both sides. Sometimes I’ll just have to accept that I’ll be on my feet for two hours because I’m passing out programs at a funeral. And I’ll just be grateful that I have so many people who want me to be part of their life: the good parts and the bad.

and I’ll spend the next week in bed.

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Sick Girl Chic

Guess who drove three hours to get a prescription for Cymbalta and a referral to a genetics clinic?? This girl!

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Luckily, a genetics clinic is exactly what I need so I’m not actually all that upset. Plus I got to spend some quality time on the road with my dad, who I don’t see very much anymore. Which is sad because he’s awesome.

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Other than all the medical stuff that went down yesterday, I decided to wear my hair curly. My hair is naturally wavy and is actually a pain to straighten, but since straight hair is generally in style, that’s what I do.

However, I knew I would be on the go all day and I didn’t really want any kind of high maintenance hairstyle. So I used a 1″ flat iron to curl my naturally voluminous hair and then ran some gel through it before sleeping on it.

The result was some pretty cute girls. I think I’m rocking the sick girl chic, don’t you?

Stretchy tee shirt so my skin isn’t irritated. Unbuttoned flannel because doctors offices are cold. Begging style shorts are both cute and comfy. Minimal makeup screams “I woke up like this,” because I practically did.

What’s your lazy day look?

Chronic Community

There’s not much good about being diagnosed with multiple chronic illnesses. In fact, this time two years ago, I would have been hard-pressed to find anything good about it at all. What changed in those two years, you ask? Did I become a masochist?

Hardly.

After my thyroid surgery, I was looking up stories of other patients. During my searches, I found out about The Spoon Theory, and people who identify with it. Becoming a “spoonie,” meaning someone who identified with The Spoon Theory, was a way to open up a whole community of people who actually understood what I was going through!

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Above is a prize I won in a spoonie giveaway. It’s a bumper sticker, shaped like a spoon, that says “Spoonie Pride.” Even better, it’s in the awareness colors for my most irritating illness, Ehlers Danlos!

Finding out about giveaways, shops, and businesses run by people who I could identify with was huge. Though I still felt lost after having to completely change my life plan due to progressive illnesses I had been struggling with since childhood, I saw sick people being normal! I saw sick people having fun! I saw sick people complaining about things that all my healthy friends and family just didn’t understand!

Although I don’t totally identify with The Spoon Theory, I think it’s really important. It’s important to have a support network. It’s important to see other people with your illness succeeding, or failing, or just living life. I generally refer to myself as a spoonie when I’m talking to other people who suffer from chronic pain and illness, because it’s way easier than listing out the ways I’m chronically ill and in pain.

As I head off to Vanderbilt Hospital today, in an attempt to finally get some real help for my Ehlers Danlos, POTS, and all the things that stem from them, I’m happy I found a community. Even if being sick sucks, all the friends I’ve made and all the support I’ve been given has been spectacular!

Hopefully I will get some answers and treatment today! Either way, I will be updating my blog with what went on at Vanderbilt!