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How Ankylosing Spondylitis Is Like a Never-Ending Summer

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It’s summer in Kolkata. The past few weeks everyone has complained about the heat. It’s quite normal to complain when the mercury goes past 40 degrees Celsius (100 degrees Fahrenheit) for months. It is breaking records daily. In the past, it rained often this time of the year with local evening thunderstorms. In the entire months of April and May (2014) there were only a few (maybe three or four) thunderstorms. In the daytime it is almost impossible to go onto the streets. Every day the temp is over 40 degrees C. However, in the streets, because of the heat radiating from the asphalt, it is almost 60 degrees C (140 degrees F). So far there is no prediction of rain from the weather department. So people are mad and everyone is complaining of the heat. The uncertainty of its duration (because of no rain prediction yet) is making them worried. They have no control over the situation for an unlimited period of time in their minds. Actually, it is a limited crisis period which will eventually go away when the rain comes to cool everything down again.

It’s the same situation I’ve been in for years. What heat is for you, pain and fatigue are for me. And I know it’s getting worse every day. But in your case the rain comes to cool everything down again. Imagine a situation of a never-ending summer where the temperature is rising every day. That’s the way my pain is acting inside my body. There is no prediction of rain at all – it’s been a hot summer for years now with no change of weather. Just as you go inside for the air conditioning, I take painkillers to get rid of my pain. When there’s a power cut and the A/C stops working, you can’t sleep all night. It’s the same for me but with painkillers.

Now imagine you’re experiencing the heat and complaining about it, but everybody around you is enjoying beautiful spring or autumn weather and they don’t even understand how it feels. And when you complain about the heat (like you’re doing in this summer), people will get angry with you because they think you’re complaining unnecessarily and the weather is absolutely perfect for them. But with your summer, with your heat and burn (and, in my case, with my pain and fatigue), everything is so very real.

That’s exactly how I feel. I can’t stop thinking about it because every moment of my life is spent in pain. And it’s very normal that I’m talking about it. Remember how you feel when you’ve had a high fever or a serious injury for weeks? How you think about it all the time? It’s just the same for me. I’ve been sick for years. I just can’t take it out of my brain. It’s impossible for me to do so. And I want people to understand why I complain about it all the time. If you’re tired of listening to my complaints, just think about how I feel, having experienced this for years. No monsoon, no autumn, no winter, no spring…just a never-ending summer that will continue for the rest of my life.

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The Isolation of Living With a Chronic Condition

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Living with a chronic condition paired with depression and anxiety is like living in a room with no door – only a window to see the outside world.

We are shut off and isolated from the moment we are diagnosed. People become weary of asking how we are for fear of us giving a truthful answer, not knowing how to respond.

It’s always uplifting and heartwarming to see stories shared on social media of communities that come together and help those who are ill and dying. However, with that said, the reason we find those stories so uplifting and wonderful is because it’s so rare. A lot of the time, those who are in need of help have become isolated from peers, friends, family, you name it .

Living with ankylosing spondylitis and Ehlers-Danlos syndrome has left friends fearful of contact, of hugs, of conversation and of sharing experiences in their day-to-day lives.

Last year I was at a low point. I was fighting my employer for leave of absence or, at the vary least, I was living alone and in constant debilitating pain. I was reaching out to friends for comfort, for anyone to listen. I found that my reaching out was a burden to some, one friend even citing that my situation was so difficult that they didn’t really want to listen to it because it was too depressing.

The sad truth is that when you are living with any condition – be it physical or mental – no one will understand that pain more than you. I started reaching out to groups on Facebook for support and guidance. I was living each day feeling devastated, beat down, hurt, but also very angry.

I had spent so much of my time helping others, picking up shifts for friends, making dinners for people who had bad days, making cakes for birthdays when I could barely walk, sending out cards to friends during the holidays. Even after having spent time crying and sharing experiences with these people, I felt so alone when I realized that once you become sick, hurt or diagnosed you get put away in this box.

This box is reserved for those of us who have quite literally hurt ourselves to help others, only to be tossed away like toy a child has outgrown.

My saving grace was finding groups on social media who catered to those like me, people I could reach out to and connect with who didn’t make me feel like I complained too much, who understood what it meant to get lost in brain fog, who knew that if it was too cold, hot, humid or just another Tuesday meant I was flaring and in pain.

Please remember friends, we are in this together, and the actions or lack thereof do not reflect on you, but on the other person.

You are not “defective.”
You are not “worthless.”
You are not “crazy.”
You are not “stupid.”

You are loved.
You are valued.
You are strong.
You are brilliant.

To those of you struggling, please reach out. We are all in this together.

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Thinkstock photo via gemredding.

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An 'Expression of Gratitude' Toward the Partner Who Stands by Me and My Chronic Pain

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So it’s February, popularly observed as the month of love. While The Mighty community readers surround themselves with love and support, I’d like to make a special mention of my better half. As a person with chronic pain and bouts of woefulness, I have realized the best antidote to my pain is a supportive partner.

Dear Husband,

You have been the kindest helpmate I could ever ask for. Through thick and thin you have stood by me for last seven years. I remember giving you the option to leave me when I was diagnosed with ankylosing spondilitis, just that many years ago. You didn’t have a clue of what you were getting into. A chest of medicines, carting an immobile me to doctors off and on, putting up with my depressed state of mind, my weeping day and night, the constant complain of fatigue and never-ending demand for sweets, just to feel good. Sometimes it just takes the strength of character and the belief in your consort, and you topped both! All these years I kept trying your patience and you kept proving patience is a virtue to have. Thank you for being my fellow traveller in this painful journey.   

Yours truly.

Living with chronic pain can harden one’s heart. Sometimes it keeps you in low spirits and makes you insensitive towards people around you, especially your partner, as invariably you spend the maximum time and share wide range of emotions with that one person. Your everyday life revolves around that one individual. At times it is just moodiness and other times helplessness.

Today I was sitting back and enjoying my coffee while thinking of the upcoming Valentine’s Day and what I could do for my husband. My mind wandered through a lot of material ideas until it found something more substantial and much needed. An “expression of gratitude” is what I decided to craft for him for the day of love.

While we go through the hardship and struggle of balancing pain and a normal lifestyle, it is essential that we melt a piece of our heart towards that person who has stood by us. Our partner, who tolerates us, gets angry, smiles back, surprises with flowers, kisses us while we rile in pain and yet doesn’t give up on loving. It’s important to reflect on and acknowledge what an understanding partner means when life is not a comfortable voyage, nor will it ever be. Sometimes he is the tower of strength and sometimes the wind beneath my wings. But most importantly, he is there! Always there with fewer complaints and a sense of empathy.

As Nicholas Sparks once wrote, “It all comes down to who is by your side.”

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What Jigsaw Puzzles Teach Me About Life With Chronic Back Pain

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Imagine your life as a jigsaw puzzle…

The information on the puzzle box is incredibly limited. It does not tell you how many pieces are inside. The photo on the outside of the box is just blue sky, scattered with soft-focused clouds. As you look at the photo on the box, you mutter, “This is going to be so difficult to put together.” Every puzzle piece looks identical in color. The theory, in any time you put together a puzzle, is that the puzzle will look exactly like the photo on the outside of the box. Your hands steadily open the box of the puzzle-of-life and remove the lid to see the contents. Much to your surprise, there are pieces of varying colors and of strange images, not all blue sky as you assumed.

My strategy, in putting together a puzzle, is to search out and place all the straight edges and corners to build the framework first. The beautiful blue frame stares back at you with the promise of many days yet to come. Your logical brain knows that life isn’t always going to be blue skies, it is a certainty that there may be clouds, maybe even a storm or two. As you fill in the pieces, you uncover a piece with an image of children. That’s pretty cool – you’re not sure where they fit in, but it makes you smile. As you stir through the pieces, you discover an image of a lovely garden; again, you’re not sure where it fits, but it’s pleasing nonetheless.

As you stir through yet more pieces, turning them right side up, you find a heart. Not just any heart – this one is broken. Oh! If only you knew where it fit, you could possibly prevent it from breaking. The next piece turned over, a hospital bed. You can assume it must fit before the kids; after all, children are born in hospitals. But this piece is not even shaped like any of the other pieces. It is so random. You keep it within eye-line, always in sight, wondering when and where it fits.

You realize you have excruciating back pain, but you pass it off as having been sorting and searching for so long. Some hot packs and Advil will surely take care of it. There is a much bigger task at hand: making sense of this chaos. Hours and days blend together as you piece together the story of your life.

A little piece with a pill comes to sight, and another, and yet another. It seems as though the medications have multiplied and don’t resemble each other. You group them together and push them to the side. You’re surveying the pieces before you. Some are brightly colored and some have dark murky images. A gloomy image of two people sitting across from each other in what looks like an office setting. These people do not look happy. One person with their head in the hands, the other holds a clipboard and pen. Unsure of what this means, you begin a new section of puzzle pieces.

Another shadowy piece is a bottle of poison, or so you think. When you look closer at the label, it appears to have some biohazard-looking image on it. Is it a warning of something dangerous? Off to the side with the other dark pieces…

If only we were able to see all of the pieces of our life laid out in front of us. To see the timing and plan, the purpose of it all. Our sense of control would be so overwhelming, we would manage and manipulate the puzzle to fit our plan. Our way. Had I known that the piece with the broken heart would surface more times than I can count, I would have maybe withdrawn. Not allowed myself to love so ferociously. That would have been the worst – not the broken heart, but the lack of passion in my life.

There is no way to compartmentalize life. There is no way to neatly organize our darkness or create nice, neat edges. The dark image of the people facing off in an office could represent many facets of my life. I’m not exactly sure which piece is which. Perhaps it’s the conversation with a lawyer during my divorce. Perhaps it’s the conversation with a doctor that is just not listening to me or hearing the cry of my body. Perhaps it’s the conversation with a trusted friend that doesn’t understand or believe the abuse of my past. In any scenario, I’m was left feeling defeated and dark.

The dimness of a hospital bed, in this puzzle, served my parents, so many days and nights sitting around a hospital bed praying for better days. Cancer and disease are beasts we try to tame. Days into months of lingering illness and pain. Some never know the victory over the beast. Little did I know that in their death, I would learn about strength.

The “pill pieces” have been present most of my adult life. I’ve battled depression and anxiety to epic proportions. I’ve had seasons of quiet and seasons of mayhem. Those manic seasons come and go, but never completely disappear. It’s in those seasons I’ve craved peace. Sought it out and chased it. Peace is elusive. What you are certain will bring you peace may be the core of chaos. While it is imperative to seek peace, you must seek discernment and wisdom equally.

In your busyness of life, you learn to pass off the little moments of discomfort as nothing more than nuisance. The back pain that stops you in your tracks can be attributed to a zillion things. Your weight, poor posture, an occupation on your feet all day. Never would you assume that your back pain may be the root of a deeper, more invasive disease. Too busy to give it light, you pass it off as that: passing. When putting together the pieces of a puzzle within a puzzle, you discover you have an autoimmune disease, ankylosing spondylitis. It’s when you understand your “biohazard puzzle piece” is not a warning of danger ahead, it is the treatment for the disease that you (and multiple doctors) failed to see. It’s the victory and defeat. You now have a name for the disease, but the treatment is another chapter in illness that you wouldn’t wish upon an enemy.

But in this tabletop view of life, you can see that these dark puzzle pieces are but small segments of a much bigger picture. Yes, they are visible, but they are surrounded by light. Not always sunshine, but light that gives purpose and life. Your life is that: purposeful. Breathe in the moment of right now. Unburden yourself of the chaos and quest for having all of your pieces organized just right. Let go of the pain of a season of dark days. Look for the lessons learned in those moments. Yes, even the darkness has a lesson to be learned. Sometimes it’s as simple as learning to not do that again, or it’s as complex as finding the voice within to stand up for yourself or a loved one in their dark season.

No, sunshine and blue skies would be too boring for this girl. I will lean in and learn about love through the pain. Healing in the brokenness. Learn to slow down when my body tells me to. Life is to be lived, discovered anew. Throw the box away! Throw away the picture in your mind of how it should be. And, if life ever gets too blue sky, take a Sharpie and write cuss words across the pieces. Live life – out loud!

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Why I’m Giving Up the Illusion That I Have Control Over My Disease

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Since being diagnosed with ankylosing spondylitis (AS), an inflammatory arthritis that attacks my spinal and peripheral joints, I have spent the better part of two years trying with all my energy to control my disease. Once I heard my rheumatologist utter the words, “incurable autoimmune disease,” I shed a few tears right there on the exam table and, not taking a week or even a few days to grieve, I jumped straight into, “How can we control this? What medications are available and what are their success rates? What diet changes can I make? What does the research say about the drivers of autoimmunity? Will acupuncture help? Should I see a naturopathic doctor?”

I wasn’t going to accept a life of chronic pain, fatigue, and spinal deformity; I was going to find the capital A “Answer” to putting myself into remission, or even curing this thing. This disease was just a speed bump and I was all about getting over it and returning to my productive life. I wasn’t about to be taken down by it, not after having just survived multiple brain surgeries (that’s a story for another day; I have two brain conditions for which I spent a month in the hospital). Nope, no way, not happening! That was that. I threw myself into solutions. I had heard several stories online of people who had been diagnosed with rheumatoid arthritis or AS, or some other debilitating autoimmune condition, and they cured it with herbs or juicing or a macrobiotic diet — or even Shakeology (the older, wiser version of me would like to insert eye roll here). If they could do it, why couldn’t I?

After cutting out gluten, dairy, grains, legumes, nightshades and eggs — and taking a boatload of supplements — I was still largely unable to walk due to joint inflammation and severe pain three months later. I conceded to taking Humira, a black-box label drug in a class of medications called biologics, and it lowered my pain significantly for about a year, but not without side effects and infections. My agreement with myself was that I’d take the heavy duty and potentially dangerous immune suppressing Western drug, while committing myself wholly and completely to lowering my inflammation and healing my body naturally through the use of naturopathic and functional medicine. A logical plan, right? I would get to the root of this dis-ease and get past it.

Well, the best laid plans often go awry.

Here I am, two-and-a-half years later, having gone through numerous naturopathic and functional doctor appointments, countless functional medicine tests and protocols, green juicing, supplement plans that made use of the most cutting-edge research on autoimmunity (including vitamin D, fish oil, turmeric root supplements, medical-grade probiotics, and countless others), food sensitivity testing, extreme diet changes to remove inflammatory triggers such as gluten, dairy, and grains, the addition of tons of nutrient dense foods at almost every meal (organic, grass-fed meats, omega-3 rich wild caught fish, tons of green vegetables, bone broths, healthy fats), massage therapy and acupuncture, restorative yoga, and many, many more efforts toward healing.

What do I have to show for these efforts? Currently, not much more than being flat broke. I have still experienced debilitating flare-ups, and the most recent required a course of prednisone that led to mononucleosis, for the second time in my life. It’s almost unheard of to get mono twice, but I did, due to the immune-suppressing drug prednisone. What’s worse? Ever since March 2016 when I developed this infection, I have been debilitated with fatigue so severe that I spend most of the day on the couch or in bed — and I’ve had to stop working. We’re now looking at an additional diagnosis of chronic fatigue syndrome, and I’m in the appeal process for long-term disability benefits after being rejected twice. At 29 years old.

I’m not saying my healthy efforts were all for naught, or that I’ll be giving them up. While I continue to feel inflamed and stiff and largely unable to move these days, I shudder to think of how I’d feel if I weren’t eating well and taking supplements. Plus, I believe both functional and naturopathic medicine have a lot to offer when it comes to the chronic, progressive diseases that Western medicine just doesn’t fully understand and doesn’t know how to adequately treat.

However, what I am going to stop doing is expecting these efforts to control my disease or symptom activity totally. I have realized — what with all my free time lying in bed this entire year — that my exhaustive search to “get better” has been due, at least in part, to my unwillingness to accept that I have a disease for which there is not yet a cure. By keeping my focus solely on “getting past” AS, I was able to avoid the pain of having to accept this truth. I did everything right, I ran the gamut from Western medicine to Eastern medicine to functional medicine to integrative and back again, and here I am, typing this on my iPhone while lying flat on my bed because sitting upright is impossible today. And it’s not because I failed at anything. It’s because I have a complicated, painful disease that is unpredictable. Plus, I’ve found that the doctors who have really progressive ways of treating autoimmunity don’t accept insurance, so available finances will determine who I’m able to see and what I’m able to do; many a night has gone by where I’ve beat myself up for not making more money, not saving more in my early 20s, not being born into a different family, and on and on so I can afford this care. I’m letting go of this. It’s not my damn fault! And it’s not any sick person’s fault that the insurance and provider situation in America is heinous.

Living inside a body you cannot control is one of the most disorienting, disempowering, and terrifying experiences there is in life. No wonder I’ve been running from it. Not knowing until you wake up in the morning whether you’ll be able to check off even one of the items on your to-do list takes a tremendous amount of emotional strength to tolerate. But rather than trying to reject my illness and get on with my life, I’m practicing radical acceptance of reality. The control I’ve been seeking is an illusion. For me, drinking bone broth and taking some vitamins are not enough to control something as complex and multifaceted as my autoimmunity. And I am not a failure for not being able to control it through these means. This disease will always be there, and I will always need to manage it, and I cannot control that I have it any more than I can control the clouds rolling in.

And PS: anyone who doesn’t understand that doesn’t get the privilege of being in my life — can I get an Amen?

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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What I Hope For in the New Year as a Person With Ankylosing Spondylitis

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It’s that time of the year when the festive melody of Christmas should soothe the mind and warm up the heart. But here I am, sans the cheer, recovering from a chronic back ache and nursing a state of mind that is only leading me into a pool of depression. A week’s holiday went under house arrest due to untold woes of inflammation. It may sound to be a state of ultimate rest — that’s what our body needs when you take a break from long working hours — but a holiday on a bed is the last thing on your mind as a way of relaxation. Well, I kept my chin up by telling myself, “Cheer up, Christmas is here and near!” Some holiday movies of the season and books did enliven the spirit that was otherwise doused with pain.

When you live with an autoimmune disorder like ankylosing spondylitis that leads to chronic pain and fatigue, a big risk you carry all the time is of unpredictability. I always keep myself prepared with what can strike and when, but sometimes the timing just hurts. And what do you do then? Pick yourself up, all by yourself, and look ahead. That’s what I have learned. Sometimes you just need to keep your mind cool and say, “So what if my holidays are spoiled? So what if I have unbearable pain, I need to get up and face the sun? Get the much needed warmth, taste the bitter sweet winter, wrap yourself with whatever energy you have and move on.” So here I am, looking forward to one of my favorite festivals, sipping my coffee, all geared up to form my New Year’s resolution. Today, as I sit through a calmer and lesser depressed mind, I realize life is only as tough as I see it, and only I can lead it to a better tomorrow.

So what’s my resolution for the upcoming New Year? While people will plan for a new home, a child, a new job, vacations and celebrations, I just hope and wish that I have enough energy and endurance to run my life. Yeah, that’s the resolution. The pledge to gain more strength, fight the fatigue, emerge more supple and mentally stronger with a dollop of motivation to feel good about myself. Now that sounds like the perfect New Year resolution in the condition I am in. I’ve realized that when you live life with a chronic disorder, what you most need is the motivation to overcome the fear of the unseen. Because it is this fear that holds you back. It makes you imagine an untoward future causing more and more mental agony. It’s so important to take one day at a time. It’s imperative to take up every challenge the disease poses to you and put your heart in fighting it. You need the angel within you to strengthen your determination to overcome your woes.

Disorders like ankylosing spondylitis are not localized. It doesn’t just affect a part of my body. It tends to be systemic, affecting overall well-being and state of mind. It can instill fear, a sense of loss and disability; it can make me anti-social and dull my usual cheerful self. But it is still just a medical disorder. And my well-being is still in my hands. So while the town is painted red and green and I feel lonely within – I still know there’s a lot to look forward to. There’s a lot of joy of Christmas that is yet to come my way. I have put together a short list of what I want to do to make the next year better and am sure, dear readers, you may relate to some of these:

1. Strive to be fit and strong.

2. Shed the extra pounds and cleanse my body of toxins.

3. Make workouts a way of life – walk, dance, take up a sport I can bear, etc.

4. Discover peace of mind and try not to lose it

5. Make new friends and nurture old bonds of relationships, and most importantly…

6. Look at ankylosing spondylitis as a companion for life, know it better and forge a pact of kindness with it!

Believe me, I already feel good when I think of these resolutions. I know they are tough considering I barely have any energy to make so much a part of my life. But I am looking forward to drawing energy from fellow people. To reconnecting with a lost self, reading more, writing more, volunteering, spending time with loved ones and above all being kind to myself. There’s now a greater desire to go back to life’s motto – I will not let anything stop me.

Merry Christmas and a Happy New Year.

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