10 Ways 'Game of Thrones' Gets Me Through the Hard Days of Chronic Illness

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kathy on the iron throne As anyone with chronic or mental illness knows, many days can be tough to get through. It’s nice to have a show like “Game of Thrones” to look forward to. It keeps us company and makes us feel like our lives are simple in comparison to characters like Theon Greyjoy.

The show is full of brutality, sickness, struggle, honor and moments of humor. Just like life. Just like a day with Lyme disease, anxiety and/or other chronic illnesses.

It’s my favorite series, and when it’s on I’m so caught up in it that I forget my worries and afflictions. It’s a welcome respite and much-needed distraction. It ironically calms and soothes me, as I’m transported to a different world. A world of others’ pain and anguish, heartbreak and triumphs — a world far away from my own.

Here are 10 ways “Game of Thrones” gets me through the hard days:

1. It gives me hope for a brighter future. If the remaining members of the Stark family can get through all the horror they’ve been through, so can I. They have grown stronger, braver and smarter from their experiences. They have endured. I can’t wait to see them prevail, just as I hope I will eventually.

2. After a day of headaches, screaming kids and watching “Caillou” or “Mickey Mouse Clubhouse,” I can really appreciate the Watchers on the Wall with some bowl o’brown and ale in hand. Oh Toodles!

3. Like Arya Stark, I can compile my own vengeful list. Instead of Joffrey and The Mountain, I have Cancer, Hunger, Apathy, Lyme Disease, Anxiety, Interstitial Cystitis, Pre-Menstrual Dysmorphic Disorder, Fibromyalgia, Asthma and Food Allergies on mine. I hope all things on my list will be killed off soon.

4. If I’m having an especially hard day and acting a little bitchy, I can say to my husband, “This is nothing compared to Cersei, I feel no shame!”

5. When my illness seems insurmountable, I think of Jon Snow and Ygritte climbing The Wall. If they can do it, I can get over my figurative wall too. I do know something!

6. The show reminds me that sometimes you have to take a detour and get off the King’s Road. It may be scary, but it is well worth it to try new things and new paths to recovery. Steer clear of The Red Woman though.

7. It illustrates how a Maester is nice to have around, as are doctors/therapists who really care. They help dull my pain, heal my wounds and provide the wildfire to destroy the Blackwater of my illness and my soul.

8. It emphasizes the importance of having friends like Samwell Tarly and family you can count on like the Starks. They provide a shoulder to cry on, a nice pat on the back and a shield to guard you from harm.

9. I can watch the show over and over thanks to my DVR, and I can get through a tough year knowing a new, exciting season is coming, just like Winter.

10. When someone asks me how I’m feeling, and I don’t feel like lying or giving them a long explanation of my illnesses, I can just say “Hodor!”

I’m grateful for my family, my doctors and George R.R. Martin. Thanks to them I can make it through Hardhome and find some warmth in the South, while I continue my quest to find some peace and happiness in the realm.

I hope all of you do the same. I hope all of you prevail.

Happiness is Coming, and like The Tyrells, may we continue to Grow Strong.

If not, we can always send in the dragons!

The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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My Response to 'What Do You Do All Day?' as a Chronically Ill Woman

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woman in bed As I lay in bed scrolling through the emails of the morning, I may look like any other 29-year-old starting her day.

But Lyme disease has made it clear these are not ordinary days. There is no healthy normal, no magic “feel better” day right now for me. There hasn’t been for years.

I’m lying here, giving my body the space it needs to prepare for my next routine of the morning: migrating to the couch.

My right big toe nail feels like it’s on fire today. I gently rub it against the sheet as if that’ll put the “fire” out. My joints ache, and my ears are ringing with a high pitch tone only dogs should be able to hear.

The muscles in my legs tense and spasm as if I’m flexing them even though I’m doing nothing. My head feels as if it’s been used as a bowling ball all night.

I breathe deep breaths and remind myself I don’t have to move until my body is ready.

This is not a “bad” day for me. This is my norm. I’ve learned to deal with it, knowing I’m working hard at killing these bugs off. Trusting, believing, hoping and declaring this is not, cannot be the end of my story.

I’m coping with tears, but it’s not because I’m sad this morning. These aren’t tears of defeat, these are the tears from battle. From fighting for your life.

Lyme has drastically transformed my little corner of the world. The effects of this illness, in combination with the host of other infections, my genetic makeup, mold illness and mercury toxicity, have led to a debilitating life. A life that looks so different than the one I dreamed of in childhood, high school or even college.

I’ll be 30 this year. Thirty. But as I struggle through my days, my ability aligns more with someone much older and a whole lot more frail.

Chronic Lyme disease can drastically change the way you’re able to function. And this is just a glimpse into the day-to-day life of those living with chronic illness.

After an hour or two of my “waking up” routine of resting and waiting to acclimate, I’ll finally sit up. If I’m stable enough, I’ll stand and move out to the living room.

Today I’m just going to sit for awhile on the edge of the bed, waiting. For the room to feel more stable. For my feet to be more secure. For my body to be more ready to start this day.

After finally making it to the couch I am already exhausted. This level of fatigue goes beyond whatever idea I used to have of it meaning “tired.” It’s so much more than that. This is a mixture of sick, tired, overworked and no shut-eye for days, all rolled into one. And no amount of sleep or rest remedies it.

The morning things need to be done, so I pick up one heavy foot after another and work my way into the kitchen to prepare breakfast. Which includes a delicious dose of what I’ll thinly veil as “supplement sprinkles.” (They’re all-natural pills, OK? I was trying to be cute).

After gathering my start of the day supplies and feeding the pup, I’m off to the couch for a dose of quiet or Netflix as I rest and munch. My brain is too foggy and full of pressure to write, or talk, or human right now so I’ll be here till my next nutritional recharge, thank you.

It’s taken me time to accept that resting is a key component to my treatment. My body demands it or else it will protest. And not peacefully, mind you.

It will tantrum, shoot pain levels up and cripple me with dizziness and muscle weakness until I’m forced to listen. Until I respond with quiet and rest. It will leave me with no option if I don’t give it what it needs now.

Today it requires a lot of rest. I didn’t listen as well yesterday. I did a load of laundry (no folding), loaded the dishwasher and made dinner. Though those may sound simple to you, that was my Everest. And I’m paying for it.

So I’ll focus on rest today.

I’ll stay close to the couch, texting and messaging friends, both sick and well. Passing the time in between cooking shows, documentaries and “Jane the Virgin.” I’ll write if my brain allows, read if I can focus long enough or color if my hands can handle it.

But mostly, I’m trying to listen to my body and be still. I’m trying to heal. Before dinner I’ll get in the sauna or do one of my other forms of detox therapies, but those may be the biggest tasks of my day.

I used to be embarrassed when asked what I do all day at home, but now I try to shake it off and just be real. I’m not lazy or unmotivated. I am sick. I am fighting for wellness. These are the facts of my reality.

I am doing the very best I can, which sometimes means saying no to an outing or phone call. It may mean missing out on an important event or gathering, but that could also make the difference in my pain level and ability to function for the days following.

This taste of a day in the Lyme light is a window into the struggle of illness, but it is only one piece of me. Of any illness fighter.

In the hours and moments I am able, I find ways to give back. I write, I encourage, I share authentically about this fight with disease. I love those around me. I smile and laugh and joke like anyone else.

I am a tiny person, but I am a warrior with a brave heart. I am a vessel to be filled with purpose, grace, kindness and compassion. And I aim to share them with others.

I may be debilitated most days from this illness, but it’s not the end of my story. I am more than these limitations. I am more than the fears that can hold me back. I am more than Lyme.

So what do I do all day?

I’m a survivor, a fighter, an illness warrior. So I do what we do best:

I survive.

Follow this journey on Living Grace.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Miss Events in My Kids' Lives as a Chronically Ill Mom

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I’m headed to my son’s college graduation at Clemson in South Carolina. His birthday falls on Mother’s Day, just as it did when he was born 22 years ago.

What a great reason to miss Mother’s Day brunch back then. What a treat to be looking forward to sharing it now.

Even though I’m still struggling with the disabling illness that felled me when he was in high school, I’m better. And I’m so grateful to be able to enjoy this big triple-header.

But it’s bittersweet.

Here’s the bitter: Everything I have missed in the lives of both my kids. No making wonderful mom-kid memories that would stay with us for a lifetime.

Housebound and often bedridden, I was too sick to go even once to my daughter’s university just two hours away to take her out for pizza with her new friends.

Four years later when she graduated, I was no longer always housebound, but I was still extremely ill. I hid in the bathroom and sobbed several times that weekend in debilitating pain, then did my best to put on my game face.

Then I pushed hard to go watch her walk down the Lawn at the University of Virginia, my alma mater. I remember it felt like the effort was maybe going to kill me — but that was one moment I was not going to miss.

Meanwhile, my son was in high school. Often I wasn’t able to get groceries or stand up long enough to cook his favorite meals. My brain was so scrambled by Lyme disease I couldn’t help him with his college essays. Me, the writer and editor who could no longer think.

So many once-in-a-lifetime occasions slipped by like breathtakingly colorful toy sailboats floating past on a river, too far away for me to touch.

When my son came home from school, I’d be in my usual spot on one red sofa. After his homework, he’d throw himself down on the other, and we’d have a chat or maybe watch some TV.

His company was comforting. But I remember with horror the day he suggested I’d feel better if I “just did more.” It’s something people often say to the chronically ill.

I lost it, poor kid.

I was yelling and crying all at once, saying something like, “Do you think I like living on this sofa? Look at the middle cushion, all crushed from my butt because I’m lying there all the time!”

“When I get well, I’m going to take this f-ing thing out in the backyard and set it on fire!

Not my proudest moment as a mom. As mothers, we don’t want our kids to feel our pain. Yet — don’t they need to know real emotion?

The worst wasn’t my own suffering. It was the loss for my kids, missing out on a mother who was fun and creative and active. Who could give the support teenagers need so much.

That wasn’t my fault, yet I feel it is heartbreakingly, unforgivably awful. They must have felt so alone.

I’ve grieved for us, and for all the families who have missed out on events big and small because of chronic illness, pain, fatigue, or depression. We’ll never get those times back.

But here’s the sweet part: Treatment is working, and I can do some things on better days. I’m coping pretty well now.

My kids have given me such great love, my son making me laugh, my daughter calling every day when I was in the thick of it.

And the losses have taught me a thing or two.

I’ve learned to appreciate even a scrap of time with them, and to be excited about their futures instead of wallowing in grief about the past. I’ve wasted far too much time wishing for “more.” Now I’ve learned to be grateful for “enough.”

And I’ve learned to accept help. The first time I had to use a wheelchair at the airport, I wept. Now I’m simply glad for the fabulous assistance today that makes this trip possible.

I know I’ll be smiling and relaxed in the graduation photos this time around.

I’ll be able to enjoy celebrating his birthday and Mother’s Day along with graduation. And in my heart, I’ll also be celebrating a fourth event properly: my daughter’s college graduation. Three years after the fact, better late than never.

Finally, I’m becoming the mom I used to be when they were little. I’ve found that encouraging steps toward recovery and a lot of learning make it possible to take the bitter with the sweet.

I’m in a new place and fervently hope other moms in my situation find their way here to such sweet emotions­­. I can’t think of a better Mother’s Day gift.

Follow this journey on LifeLoveLyme.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What the Pamphlets and Documentaries Didn't Tell Me About Life With Chronic Illness

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Most of the time, a chronic illness diagnosis is accompanied with medication (a lot of it), a vague timeline of when you might feel some relief from the ever-present symptoms, and an overwhelming amount of jargon not really explaining anything clearly.

When I received my diagnosis of chronic Lyme disease, I was given a pamphlet and directed to a documentary that chronicles the harsh reality of the illness I would be facing for the rest of my life. It was all extremely overwhelming.

I watched as people transformed from fully-functioning beings into those who couldn’t walk, talk, eat or even breathe on their own. Doctors were losing their licensing for treating patients under this diagnosis, and the lives of these people were altered in way I could never explain.

It wasn’t until I was well into navigating this illness that I heard the voices of hope whispering through the ringing in my ears.

Here’s what I wish they would have told me sooner:

You’re going to lose parts of yourself, but who you are will never falter. 

Because of the way this disease works, you will no longer be able to use your joints in the ways you once did. It will take less than six months for your passion of being a musician to no longer be a reality. You can’t change it, you can’t stop it, you can try to fight it to the very end, but eventually you will lose.

This will not change who you are. You will still be creative, you will still be passionate, you will still be be you.

You won’t live the life of an average college student, but you will learn more than any degree can teach you.

The straight-A honors student you once were will get lost in all the brain fog, pain and memory problems. Your grades will slip until you’re forced to drop classes — and then semesters — until school is no longer an option. This does not mean the time was lost. You will learn how to listen to your body, you will learn to exercise your brain in ways conducive to your limitations, you will still be you.

People will leave you because of this illness, but you will form friendships to last a lifetime.

Some people can’t understand — or choose not to understand — what it is you’re going through. Many will drift away, others will turn and run, and for most you won’t ever get a chance to change it.

This does not mean you are alone, no matter how lonely it feels. You will be available to invest deeper into the ones who stay — and allow them to invest in you, you will meet truly compassionate individuals, you will still be you.

You’re going to struggle through days — or years — of constant pain, but you will still have an adventurous spirit.

The symptoms will begin slowly, creeping from the inside out, until one day there’s a new normal with new joint damage or constant aching and tenderness. You’ll spend more time in bed than exploring the world outside and give up on attempts to explain how you really feel when people inquire.

This does not mean you will lose your sense of adventure. You will learn to find joy in the little things — the touch of grass, the warmth of the sun, you will be thankful for days when the pain is less relenting — and do incredible things despite the pain, you will continue to share vulnerably in order to share your story, you will still be you.

This disease will force itself into every crevice of your life, but you will not lose hope.

As treatments fail, this disease will spread through your body attacking each and every cell. Your days will revolve around alarms and reminders to take supplements, push IVs, and administer countless remedies. You will be forced to accommodate your own disabilities, ignore naivety from those who choose to judge the invisibility of your illness, and fight for validity with the world of Western medicine.

This will not steal your hope. You will learn to appreciate those pills for giving you some relief and hopes of remission, you will embrace those disabilities as part of your uniqueness, you will push yourself toward transparency in order to turn those who are naive into allies, you will join other warriors in order to make the voice of chronic illness louder than it’s ever been before, you will still be you.

young woman making fist and showing arm muscle
Kate

Your life will seem like it’s shrinking, but my dear, just the opposite is happening.

As this disease stamps its seal on your life, what was once important will no longer seem relevant; it will feel like your world has fallen away.

This is far from the truth. You will learn how much your world has expanded, you will appreciate the life you’re able to live, you will experience it on a deeper level than the majority of those around you, you will still be you.

And when you’re afraid to look in the mirror because of the change you’ve experienced, just remember the words of Carl G. Jung, “I am not what happened to me, I am what I choose to become.”

Follow this journey on This Kate Lives.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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My Awkward Social Life as a Teenager With Chronic Illness

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When people ask me how I am, I often lie. I think many chronically ill patients can relate. We always say “I’m OK” or “I’m fine.” We aren’t, but that’s what people want to hear. When people ask how you are, often it’s because they’re trying to be polite. Usually they don’t want to hear your long story about your symptoms and medical history. Whenever I’m out being social (which isn’t often) I want to act as “normal” as possible. I want everyone to treat me like they would anyone else. I don’t want to be negative and all about my disease. It’s hard though, because my whole life revolves around my illness.

I don’t know what small talk is anymore or what it’s like to be a “normal” teenager. Often I feel like an outcast. I feel different and uncertain about how I should act around others. I don’t know what my friends go through on a day-to-day basis. All I know is being sick. I don’t remember what it was like being healthy. So when someone tries to talk to me, often I don’t know what to talk about. If I mention my disease, the conversation dies and it becomes super awkward.

Tomorrow is prom… I’m going to try to go hang out with a group of people. Some of them I know, some I don’t. They are going to get ready while I hang out. Then we are going out to dinner and taking photos. I wonder how it’s going to go. I have been really sick lately, so I  will definitely need my cane, maybe even my wheelchair. It depends on if I go to all of it. I know I can’t go to the actual dance, because of my neurological symptoms. My mom said the restaurant will be crowded and loud, too. That is not good for me because I’m very sensitive to light and sound. For example, when someone is talking at a normal volume, to me it sounds like yelling.

Everyone will be nice, but sometimes it can be petty uncomfortable for me to be social. I wish I could be social without it being difficult for me. I wish I could do everything I wanted. Unfortunately, that’s not how it is.

image
Kali and a friend.

It’s OK, though. Everything will fall into place like it’s supposed to eventually, including my social life. For now I have my family, my Lyme disease friends, and a few other friends supporting me. In the future, I can make new healthy friends. All I need is to be myself. That’s always been one of my values. If people don’t know how to act around me, that’s their problem. I should feel comfortable being me. I shouldn’t feel embarrassed or ashamed about being ill. I don’t need to worry about what other people are going to think. I need to live my life to the fullest.

Follow this journey on Kali’s Blog.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Wish I Could Tell Myself When I Was Diagnosed With Lyme Disease in High School

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After years of sickness and hundreds of tests, a doctor finally diagnosed me with chronic Lyme disease in October 2011. I missed my sophomore, junior and most of my senior year of high school. The high school years are already complicated, but add a chronic illness into the mix. Those years were extremely sad and here are some things I wish I knew when diagnosed.

1. It’s not all in your head.

So many doctors and other adults in my life told me I was not as sick as I was that I actually started to believe them. I got so used to being sick that there were days that I told myself that I was faking it. Now, looking back, I feel awful for 16-year-old me. Not only did I think I was lying to others, but I felt like I was lying to myself. I felt like a failure. Because I thought I wasn’t actually sick, I thought that my entire life would like this. You won’t realize how sick you are until you’re healthy again, but I promise that you will get better.

2. People will judge you.

There were plenty of days where I looked the way I felt (aka miserable), but most days, I looked completely “normal.” Chronic Lyme disease is an invisible illness. When I physically felt and looked better, my neurological symptoms were what kept me out of school. I was afraid to leave my house, even just to go on a simple trip to the grocery store, in fear that someone from school would see me and think I was faking. I vividly remember seeing one of my teachers when I went to pick up Panera Bread and came home and cried because I knew she was skeptical. Looks can be deceiving. You need to get out of the house as much as you can when you’re up for it. People will judge you no matter what, so just do what is best for you.

3. Societal norms are silly.

Just because most people go to bed before 12 a.m. and wake up before 9 a.m. does not mean you have to, too. I suffered terrible insomnia, or “lymesomnia” as we like to call it. Once again, I felt like a failure each day. I was constantly called lazy because I woke up around 2 or 3 in the afternoon. But what people did not understand is that I could not fall asleep until at least 4, 5 or 6 in the morning. Finally, someone helped me realize that just because the average person’s day occurs when the sun is out, does not mean mine has to, especially because I could not go to school anyway.

4. You’re going to lose “friends.”

Most of the friends you have now are not going to be there when you get better. When you are sick for so long that the new normal becomes life without you, they’re going to move on. And it’s going to suck. You’re going to have plenty of days when you don’t get any texts. You’ll watch “One Tree Hill” wishing you had a Brooke to your Payten. But, I promise it’s for the better. Why would you want the people who won’t stick by you during a storm next to you in blue skies?

four teen girls wearing green shirts standing on a dock
Kerry (second from right) with three friends she met through having Lyme disease.

5. Being sick is the greatest thing to ever happen to you.

I know, it sounds ridiculous, but hear me out. All of the hours you spent trying to finish your senior year on time so you can graduate with your class while all of your friends are catching senioritis will prepare you for college. You did almost a year’s worth of schoolwork in a few months. You can do anything. All of those doctor appointments and meetings with teachers have matured you. You’ll be able to see the bigger picture in life. You will live the rest of your life valuing your health, something most people take advantage of. Most importantly, you’ll always remember that everything happens for a reason and you’re going to be OK.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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