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.

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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!

On Being on Steroids…Forever.

I’ve been on steroids for about a year now. I don’t have a good track record with steroids. In fact, when I was a kid, I got psychosis from a pack of prednisone and wound up crying about Easy Mac and being attacked by Geese for several hours. Another time, in high school, I was given prednisone for some kind of something, and I wound up falling sideways out of my seat in the middle of class. I lay on the floor for several minutes in dazed stupor.

Knowing all this, you probably wonder why I’m on steroids at all. When my cardiologist suggested a steroid to help me retain sodium, I looked at him like he had grown three heads. He knew my track record. He knew the nightmares I get. He knew how freaking hungry steroids have made me. However, after trying almost everything and still fainting several times a day, I finally agreed to add florinef into my daily regimen- not once, but TWICE daily.

The first few weeks were rough. There was a lot of crying, a little bit of paranoia, and plenty of times I got so hungry for carbs that I seriously considered glutening myself. Don’t judge; I wasn’t thinking clearly at the time.

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As I said at the beginning of the post, it’s been a year now. My face is pudgier than ever, a fact I have turned to makeup to hide. (Hence all the makeup reviews you guys get! So yay for you!) My stomach is a little round, as are my legs, where I’m retaining water and salt to keep from passing out.

But I feel better. I pass out less. I can actually go outside, and I can actually stand up without my heart rate spiking over 200. All in all, I’m glad I made the decision to stay on steroids.

Except for nights like tonight, when my steroids convinced me that a ten p.m. milkshake run was a good idea. And that I needed more than one milkshake. I needed a lot of milkshakes. I needed them fast.

I know that there will be nights like tonight, when the temptation to dig into some carby, cheesey food will be great. I know there will be nights when the only thing I can do to keep myself from going stir-crazy is to drive to the nearest all night diner and order as many milkshakes as my stomach will hold. But that’s okay.

It’s a small price to pay for standing.

One Year Anniversary.

Tomorrow is the one year anniversary of my thyroid surgery. I’ve come a long way since that surgery.

When I gained forty pounds in less than a month and started having trouble breathing or swallowing, the trail led to my thyroid. We’d let a (huge) lump on it go unattended for years, thanks to some incompetent doctors and my unwillingness to have yet another painful biopsy. After finally seeing a competent ENT, I had hope that all the health problems that had plagued me my entire life came down to this useless little organ about to be chopped out of my neck. In fact, I took a pre-surgery selfie just so I could see my progress over the next year. I was expecting my hair to stop falling out, the weight to fall off, and the strange aches and pains that traced back to childhood to disappear. See how smug I look, despite it being 4 am? That’s the face of someone who thinks all their problems have just been solved.

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After surgery, I knew something was a little off. I was in so much pain and nausea, I seriously thought the world was ending. In fact, the recovery room staff took away the little button I could use to give myself morphine because I had pumped so much of into myself. The doctor had rather optimistically told me I could start many of my old activities again a week after surgery. That didn’t happen. A week after surgery, I was laying in bed with vertigo. I couldn’t stand up without falling over like someone experiencing their first time at sea during a very windy day.

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After a while, my ENT got my levothyroxine dose adjusted, and I was still as sick as I had ever been. Armed with a referral to a rheumatologist, I headed out to find out what had really been plaguing me all these years. The first rheumatologist was a bust, but my second rheumatologist was excellent. I was diagnosed with Ehlers Danlos Syndrome, and shipped off to a cardiologist to find out why I was dizzy and had been passing out all the time.

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The diagnosis there was dysautonomia- POTS and NCS, to be specific. The cardiologist got me started on treatment, as did my rheumatologist. So, one year after surgery, and I’m feeling… better. I’m not healthy, by any means. Some days I can’t get out of bed thanks to vertigo and syncope. Some months my joints go out more than I do. But progress is progress, and any progress is good.

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If I put the pictures side by side, I can see the difference a year makes. Yes, part of it is because I finally learned to do my brows. The rest of it is just my body finally getting the help it needs.

I can’t make a good speech about how eating right for a year and working out can change your life. That’s not what happened for me, and the difference isn’t dramatic enough for that anyway. Plus, I still can’t resist eating a whole tub of Udi’s brownies at one time.

Is it usual to feel this nostalgic about your thyroid surgery? I’m thinking I’m strange for missing that tiny little organ and my pre-Ehlers Danlos- scarred neck.

 

You might be chronically ill if:

Just a fun post today, inspired by my pre-syncope episode while putting on the compression stockings I bought to help prevent syncope. It’s moments like that when I truly know I am chronically ill. So, you might be chronically ill if:

  • when putting on your compression stockings is enough of a workout to send you back to bed.
  • when eight hours of sleep no longer seems like a reasonable, restful amount
  • when you know more about medicine than some of your doctors
  • you wear sweaters in the summer and tank tops in the winter thanks to poor temperature regulation
  • you know what “spoonie” and “dish” mean.
  • you are always the youngest person in the waiting room
  • yes, you have tried yoga.
  • you’ve planned outfits just to match the mobility devices you need that day
  • your purse could pass as a small pharmacy

What are some of your “chronically ill moments” like this? 

Tilt Table and Rare Disease Day

I celebrated Rare Disease Day a bit early. Yesterday, in fact. How did I celebrate a day dedicated to raising awareness for rare diseases? By getting a weird medical procedure done, of course!

Yep, yesterday was my tilt table test. Although I had been diagnosed with dysautonomia before the tilt, this test was supposed to let me know if I needed a pacemaker or not. So I stressed, and I planned, and then… I didn’t need a pacemaker. Well, that’s not exactly right. I’m in a weird class of NCS/POTS where I could probably benefit from a pacemaker, but not enough to drop thousands of dollars on surgery. So it looks like I’m right back where I started from- being a medical zebra and utterly untreatable. Oh, and eating tons of salt.

How did you spend rare disease day?

Pacing Myself?

After several weeks of waiting for an appointment that was delayed by rain, snow, and my cardiologist receiving all of his new patients in January, I finally dragged myself into the cardiology office this past week. I was the youngest person in the entire building. I could tell I was getting stares from some of the other patients, none of whom seemed to be below fifty years of age. A few of them ever whispered as I walked past and signed in with the receptionist.

The receptionist was sympathetic and curious- I could tell she was trying to figure out why I see two different cardiologists, with entirely different specialties, on a regular basis. Until a few weeks ago, I was too, so I didn’t blame her. The nurse called me after only a few moments, which seemed to irritate a few of the other waiting room occupants, but they didn’t know I was only seeing a physician’s assistant. After an uneventful EKG and a bit of joking around with the nurse, I was seated in a cold room and my carefree facade began to crumble.

You don’t know the low points of chronic illness until you almost start crying on the arm of a physician’s assistant you’ve only met a handful of times. She was understanding, but not unnecessarily sympathetic, when she delivered the news that had kept me out of the doctor’s office for longer than it should have. Time to start the pacemaker process.

This whole visit would hardly be worth blogging about, but one thing stood out to me. One thing that never, ever happens to me at doctor’s appointments. 

Everyone at the office was totally, 100% convinced that I was sick. 

Most appointments I go to are marred by the “but you don’t look sick,” or the “have you tried therapy?” Others are ruined by “but if you just lost weight,” or “I’ve heard good things about yoga.” I’m always trying to convince my doctors that I’m sick. That they need to listen to me. That they need to trust me, because I know my body better than anyone else could.

This time, it was my doctors trying to convince me that I was sick. After years of being told my fainting spells, dizziness, blacking out, and headaches were all in my head, caused by anxiety, or simply undiagnosable, all the negativity started to sink in. It was hard to believe it when I first saw my cardiologist, and before he even introduced himself, he told me that I was finally in the right place. Before my cardiologist even told me his name the first time I saw him, he told me that my fainting spells weren’t all in my head, and that I had a real medical problem that we would work together to solve.

There are horrible doctors out there. They will try to tell you that you aren’t sick, or you aren’t sick enough. They will try to belittle you and demean you. But there are also excellent doctors out there, that want to help you. It’s hard to remember sometimes, especially when you seem to be seeing bad doctor after bad doctor. Luckily, I have finally found a good team of doctors who are trying their hardest for me. And with some luck, eventually the number of doctors who are good for people with chronic illnesses will grow. That’s why I advocate. I advocate to change the way that doctors look at patients with mysterious symptoms, or uncommon symptoms. I advocate so that other people can find great doctors like I did.