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Why I Quit Thinking of Myself as a 'Victim' of Dystonia

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I live with a neurological condition called dystonia. It causes muscles to involuntarily contract which can cause a lot of pain. I have learned to better manage my symptoms, but when my pain was at its worst, it significantly limited what I could do.

For years I characterized dystonia as an evil intruder that ruined my life. What I could no longer do was my only focus, which caused great anger and depression. I was so bitter that I let myself become a victim. I was lost in a world of pain – a world I felt was out to get me.

Feeling like a victim is normal when diagnosed with any serious health condition, but it is not just people with a health condition that play the victim role. People who look negatively on life’s circumstances complain about everything from the weather to other people to their jobs…the list is endless. We have all done it, which is fine, but it can be self-destructive if we remain in this state of mind. We become isolated, depressed, bitter, angry and resentful. We mainly complain and rarely look for solutions to problems. To the victim, everything is always someone else’s fault.

For the first several years with dystonia, this is exactly how I felt. I was miserable. I felt a deep sense of loss and was extremely frustrated, so I engaged in a lot of negative self-talk. My anger and sadness made my dystonia worse because negative emotions cause increased muscle tension. I had to shift my thinking and focus on moving forward if I wanted to live a happier and healthier life.

I had to get out of the “why me, poor me?” frame of mind if I wanted freedom from my mental anguish. Instead of asking, “Why me?” I began asking, “Why not me?,” “How can I learn to live with dystonia?” and “How can dystonia help me learn and grow?” I am no better or worse than anyone else so if it happened to me, so be it. Maybe there was good reason for it. “Start viewing it this way,” I told myself.

Plus, there was nothing I could do to reverse things so I needed to learn to accept it and find the lessons in it, even when I was in ridiculous pain and could barely function. Easier said than done, but awareness of this attitude is a start!

I try very hard not to, but I still find myself being a victim at times, so I am not immune to any of this whatsoever. I just work much harder now to be mindful of these tendencies. When things get tough, I do my best to tell myself, “Although this is a difficult situation, I am going to make the very best of it.” This shifts my focus to one that is solution-oriented, which always puts me in a better frame of mind and helps me enjoy all of my abilities with passion and excitement.

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To Facebook Friends Who See All My Posts About My Child's Dystonia

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When your daughter has rare condition that causes her daily pain, your thoughts are consumed with that every day. When there’s no cure to take it all away, you just want to scream from the rooftop until someone hears you. You want people to understand how hard it is for her to go through this and for us, as parents, to watch her go through this. How incredibly helpless and lonely it feels.

I don’t want pity, that’s not at all what I’m looking for. I want you to understand that while you might get tired of all my medical facts I post on Facebook, I’m just trying to get the word out there. I want the name of her condition on the minds of scientists, doctors, and yes, I would like to educate my family and friends. I want you to advocate with me, not because we’re best friends or even family, but maybe because you’re a parent, maybe you’re a nurse or a teacher, maybe you know someone who knows someone fighting a battle, maybe you’re fighting your own.

Waiting for a cure feels like waiting in line with a million people, and I’m just a mom who can’t be patient. Our lives have been jolted into a different type of reality. That saying — “I would do anything for my kid” — that moment is happening right now for me. So please bear with me.

I know I have probably blown off half of you a time or two. I couldn’t meet for a play date or coffee. I haven’t returned your phone call from six months ago, and now here I am clogging up your Facebook page full of information that will probably never pertain to you. I talk all about her visits to the hospital for her brain MRIs, I share pictures of her in therapy, I announce how much blood she just had taken and mention the fact she didn’t cry. I brag about how wonderful her preschool is and show off her newest feet braces she has to wear.

I do this kind of stuff as much as you talk about your job, or show pictures of your child in their sport uniform or of you lounging on the beach on your exotic family vacation. I hit the “like” button. I’m very aware that the only topic I seem to know about theses days pertains to a rare condition, but that’s simple to explain. This our life.

I’m exited to share these things with you. I love her little feet braces. She personalized them with a Care Bear pattern. The fact that she didn’t cry when having her blood drawn — I’m proud of how strong and brave she is. All those pictures of her in therapy, that’s her sport. She works so hard in physical therapy, and when she learns a new word during a speech session, I’m over-the-moon excited about it.

I can’t promise my days of spreading awareness about my daughter’s journey with dystonia will ever stop. I can’t even promise that I’ll call you back in a significant amount of time, but I can promise that every time you hit that “like” button on my pictures or when you hit the “share” button to help spread awareness about this condition, I appreciate it more than words. It lets me know you get it — even though our lives are completely different right now we can still connect on some level. I don’t even blame you if every once in awhile you skim past my lengthy post and don’t always have the energy to read. But for all the days you do, I thank  you!

I can promise I will continue to hit the “like” button on all your amazing life accomplishments and adventures, big and small. I promise to always recognize how different we are, all while knowing we are all enduring some kind of struggle in life. I also promise to spread as much awareness about childhood dystonia as I can.

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Thinkstock photo by Rohappy

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Finding a Healthy Way to Cope With My Dystonia

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I haven’t really taken the time to explain how I cope with living with dystonia on a day-to-day basis. I am very much of the mindset that you are in the driver’s seat, and you manifest your life through your thoughts and actions. I guess the relevance to the point I am trying to make is that I decided a long time ago that I was going to be in the driver’s seat and not a passenger to my own life. I had been dealt this hand and I was going to play it to the best of my advantage.

In the early days of having dystonia I really struggled to cope. What I am  now going to tell you is something not many people know. Being 23 years of age, at my ultimate peak in life, to then so suddenly having to deal with the huge punch in the face that is dystonia was often very overwhelming. I struggled a great deal.

Unfortunately, some of my coping mechanisms weren’t the best. I took a dangerous path that could have easily become very destructive if I had not pulled myself together. I found myself in a very dark hole and I had nobody to turn to. I was very alone, having no real family network I could rely on. Unfortunately, my relationship with my father in recent years has been a difficult one, after losing my mother when I was just 15 years of age. I did not feel I could approach him for a shoulder to lean on. He supported me the best way he knew how, but not in the way I needed so much at the start.

Feeling so alone at this time, I turned to the things that, for a moment, numbed the emotional pain I was feeling but also gave me a boost of confidence. I don’t think I really need to spell out what I am relating to. I spent a good year being quite destructive to my emotional and physical well-being and it took a lot of strength and a good, hard talking to myself to realize that this was not the path I wanted to take nor the one I had imagined for myself. It was time to make a change and face some demons head on.

It was at this time I accepted my dystonia. This was the moment I changed for the better. Immersing myself into my new lifestyle, keeping in shape has been a great beacon for me. Not only has it kept me in physical shape, but most importantly it has kept those dreaded demons at bay. I must admit I am slightly obsessive about it at times, but I would also say – and you will hopefully agree – it’s not a bad obsession to have. On a very serious note, the way I have designed my lifestyle is my lifeline.

muscular man in tank top working out at the gym

Don’t get me wrong: not every day is plain sailing and I still have many days of doubt. But what I will say is that having the opportunity to express myself to you guys is absolutely amazing. I no longer feel alone in my journey with dystonia. These are some of the things that give me strength and keep me moving forward. I am so very lucky to be surrounded by the overwhelming love and support of the ones who care for me the most; without them I would be lost. Sometimes its the simplest things in life that make things clear to me and make me realize how lucky I am to be alive. Yes, I have dystonia, but so what? Dystonia does not control me, it does not define me and, most importantly, it does not dictate to me.

So with that said, I look forward to sharing my journey with you all. I hope to give a positive insight into my lifestyle and my coping mechanisms. You can look forward to snippets of my training routines, diet and also what I do with my downtime. To finish, I would like to leave you with this quote:

“Surrender to what is, let get of what was, and have faith in what will be.” –Sonia Ricotti

Any comments or questions are very welcome!

This post originally appeared on In the Life of James Sutliff.

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To the Ladies Who Judged Me Without Knowing I Have an Invisible Illness

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I felt as if you were jeering at me. I was within earshot when you commented on how “snooty” I looked.

I was wearing my favorite coat. I know it’s flattering and it makes me feel good.

You see, I don’t go out often. A trip to the hospital is a day out for me. In fact, those trips are frequent and my health limits many aspects of my life. I can genuinely say I spend more time at the hospital than I do socializing.

So yes, I made an effort. I wore my lovely vintage leather gloves too; an unexpected gift from a friend. These gloves remind me that kindness exists and I’m not alone.

And I wore my boots — the ones with heels. Not going-out heels, but heels enough to give me just a tad more confidence.

I also spent a lot of time looking at my phone. I wasn’t really doing anything, but I couldn’t bear the thought of eye contact or interaction with strangers.

I needed those things, that confidence, the distraction and reminder that I’m not alone because on previous visits to that hospital I have felt the opposite.

On one occasion I was hiding in a corner, shaking and hyperventilating. I was unable to communicate or make eye contact with anyone. I was genuinely terrified to step foot outside my house that day. But I made it. I made it to the hospital. I made it through the appointment and I made it home again. That was an achievement.

I spend many days in my onesie, unable to raise my arms or hold them up long enough to brush my hair. I wish you knew how much effort it took to brush my hair and put on my boots today. You don’t know because you can’t see what it took to make my way to the hospital, the place that previously terrified me.

I heard you comment on the fact that when I moved to let someone sit next to their partner, I didn’t even smile at them. You’re right, I didn’t. I didn’t even try. I have (among other things) dystonia. It’s a condition affecting my muscles. Essentially, my brain can’t control my muscles properly. Although dystonia can affect people in many different ways, for me it affects my neck, shoulders and primarily my face. I think I’m sending one signal (e.g. “smile”) but my brain goes, “Nah, let’s do this instead.” The facial spasms that result are painful and exhausting. Whenever the affected muscles are untreated, that’s what happens to my face.

That’s why I was at the hospital today. Without treatment — and whenever it wears off — one side of my face pulls with such force that on the opposite side I now have a jaw disorder which is commonly caused by car crashes or other high impact accidents. My face has done that all by itself. The other side of my face is pulled so tight it doesn’t move, so essentially I look like I’ve had a stroke. So yes, I often decide not to smile. You don’t know because you can’t see.

I’m also painfully aware that until I smile or talk I look “fine.” Such can be the case with an invisible illness. It is a significant mismatch between what’s going on inside my body and what others perceive. And while I may flush in embarrassment at the sly glances I spot in my peripheral vision while I’m busy “looking snooty,” it’s preferable to the  pity I feel when others suddenly become aware of  the dystonia on my face. I can often tell the precise moment when the switch happens. I’m in my 30s, and I suspect I’ll be seeing it for the rest of my life. Even worse, people occasionally feel uncomfortable and redirect their conversation to the person I might be with. I am still me, in this misbehaving body. I’m still intelligent. I’m still an extrovert at heart, a warm and friendly person. But my body lets me down. You don’t know because you can’t see.

For me, it’s painful to smile. Talking is agony. Before saying a word or attempting a facial expression I have to consider whether or not it will be worth the pain and fatigue it will cause. Imagine that smiling hurts; that talking hurts. What if you were to spend just an hour in someone’s company with those things in mind? This is me. This is the rest of my life. I have to make decisions about the comments I make or the people I greet. I even have to consider talking to my son, is it “worth” instant pain and hours of fatigue? Thankfully, he’s understanding because of what he’s seen me go through. It’s usually him who makes those decisions for me, because he knows I’ll naturally always put him first. He’ll say, “It’s okay mum, we don’t have to talk,” when he sees me struggling. I’m so proud of him. He’s caring and compassionate. He understands. Unfortunately not everyone does.

So, to you two ladies, there’s just one thing I want you to take from this: please don’t judge; you don’t know what you can’t see.

Follow this journey at Wonk & Warpaint.

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My New Year's Resolution as a Person With Dystonia

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I have never been huge into setting New Years resolutions. I always saw it as something where you set a goal and hopefully you continue the goal two weeks later. I can say I attempt each year to reduce the amount of frozen yogurt I eat, but sadly that is still one of my weaknesses, and it always will be. This year, however, I want to set a resolution: to love myself.

I was diagnosed with dystonia September of 2015, and I did not expect my life to drastically change. As I was tossed around from specialist to specialist, I became lost in who I was. I was constantly being surrounded by medical jargon and accusations of faking symptoms. When you’re doubted for a long time, you lose confidence in yourself and in others.

After things started to look up, my medical journey would take a giant drop. I have learned I will need amputation, not on just one foot but on both. To hear this news and then have every specialist apologize to me personally that I fell through the cracks of the medical system was one of the hardest things to swallow. To learn this all could have been prevented was the worst part to hear. I have so much built-up anger. Who wouldn’t be angry if they just learned the medical system failed you and your best alternative is amputation?

The amount of emotional pain I have from my journey with dystonia is endless, and it’s time for that end to be permanently closed. It’s time to accept this is completely out of my control, and the doctors are doing all they can to help me have the best quality of life. It’s OK to be angry that I had to pause school when I had four classes left, but it’s time to diminish that fury. My time will come, but for now, it’s time to love myself for all of the pain I have experienced.

2017 is a new year, which means new beginnings. I want to begin each day reminding myself to love every part of me. There is a lot of healing to do (in many aspects), and the only way to begin is to love myself as a whole.

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Thinkstock photo by Medioimages/Photodisc

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How I'm Getting My Legs Back After a Rare Dystonia Diagnosis

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“We think you may have dopa-responsive dystonia.” I was in complete shock as a neurologist sat beside my hospital bed suggesting I no longer had PNKD, a condition I had only recently began to accept. For the past two years, we believed I had a condition known as paroxysmal non-kinesgenic cheorothestosis (a rare type of dystonia).

In the afternoon of April 2014, my torso had begun throwing me back and forth violently, spasming uncontrollably. After 6 hours of continuous involuntary movement, we decided I needed to get to the hospital as it was showing no signs of getting better. I was taken into the majors unit fairly quickly and had the routine things checked; blood, blood pressure, oxygen saturation etc. For the last 30 minutes I had been lying down on the bed, drained and overheating from the exhaustion of the consistent violent movements. The doctor found that my heart rate drop then shot up rapidly once a stood up. She suggested that it may be a condition called postural orthostatic tachycardia (POTS) and put me on a saline drip. I was told I would be OK to go once the drip had emptied into my bloodstream. I was never given a brain scan that night! After over 6 hours from when my tremors started, they began to calm and I finally got to go home. But the problem was, my tremors hadn’t completely gone.

The next morning I woke up with no tremor. I felt a huge sense of relief, however it didn’t last long as my tremors began again within a few minutes of being awake. My mum booked me straight in to the doctor. He did a full physical examination, looking very concerned. The emergency room doctor wrote a note for him, explaining what had happened and that she thought it was being caused by POTS. My GP instantly dismissed it, told me this shouldn’t happen due to POTS and that I needed an emergency brain scan as it could possibly be a brain tumor. Horrified, we returned home with some beta blockers to try to see if they would  help, and had an urgent referral made to a neurologist.

Over the next few months I had countless tests carried out to try to find the problem. My brain scan came up clear, ruling out a tumor, stroke or bleed on the brain. All blood tests came back normal, as did my test for Wilson’s disease. We were baffled, but I continued with medication as it was helping to reduce the severity of the tremors.

A few months passed and I was beginning to get worse. I had been to see a cardiologist who ruled out POTS from a table tilt test and a 7 day monitor to check if it was related to my heart. I started to get bit of what I now know to be myoclonus around the end of June. I knew that something was going on in my body, and had a horrible feeling something bad was going to happen.

On July, 12, 2014, I had what appeared to be a seizure, although I was conscious. My family rang the ambulance and was rushed to the hospital, where I was kept in for 2 weeks and had every test you can imagine. It was the worst time of my life; I can’t describe how scared and depressed I felt. After being released, I saw my neurologist a few days later, who diagnosed me with paroxysmal non-kinesgenic cheorothestosis.

Over the next 2 years things began to change; new parts of the body began to be affected by the dystonia. My body would contort, shake and freeze in positions. I had a few episodes which I now know to be dystonic storm. My neurologist was fantastic and tried to help however he could, trying various anti-seizure and other meds. I felt like it was constant battle to function every day, as I was always drained of energy. Trying to have a social life became a chore; I felt I had no energy to go out after work, as the medication and condition was making me feel like a zombie.

In July I got a job working at the local hospital. I’d been on the ward for 2 weeks and I started to feel my body struggling. I tried to ignore it, but it started getting worse. My neck started pulling again, and I was getting tremors in my hands and stomach. Then something that had only happened twice since my condition started — my legs started turning in. My knees would touch, my legs stiffened, my big toes pointed upwards and I could barely place my heel on the floor.

Less than a week after, I had a severe dystonic storm and was rushed to the hospital by ambulance. I had a horrible feeling the previous night that something bad was about to happen. I cried to my fiancé that I had a feeling my legs were going to deteriorate further, and I wasn’t going to be able to walk down the isle or have our first dance when we get married. In the hospital, I was given all sorts to try and calm the movement but nothing worked. It continued for almost 10 hours — I have never experienced pain like it. The whole of my body felt broken.

The next day, I realized that my legs had paid the price. I couldn’t walk unaided, my balance was off and my legs were stiff and weak. My legs were collapsing in again, but this time they stayed that way — they had become fixed in a dystonic posture. With my PNKD I had always had episode of dystonia where it would come and go, but it had never been constant. I was kept in for almost 2 weeks, monitored closely and had therapists teaching me how to walk on crutches so I could get around. I’d use a wheelchair for any long distance.

When I finally got discharged from the hospital, I had a hand rail fitting so I could get up and down the stairs and adaptions made in the bathroom to give me independence. My world felt like it had been turned upside down. I couldn’t go back to working on a hospital ward again. I was devastated. I began having physiotherapy to get me walking on just one crutch, which I managed! I worked so hard to try to get my legs working like they were before, but I was still needing a wheelchair for long distances.

Then just 6 weeks later all that hard work seemed like it was for nothing. My mouth started drooping, my speech slurred and I thought I was having a stroke. We went straight to the hospital. It all began again; my body deteriorated back. After a few day it was suggested that I had a trial of a medication called Sinemet. They said if I had dopa-responsive dystonia, I’d see a difference in just a few days.

As you can imagine, I was skeptical. I didn’t see how a tablet was going to sort out my legs; I could barely walk and couldn’t even stand without holding onto something. A few days passed, and I thought nothing was going to change. Then on the third morning of being on the medication, I got up to go the bathroom and noticed I could barely feel any pain in my legs — the pain had been excruciating from my increased muscle tone. I decided to take my hand off the wall and take a step forward. I couldn’t believe it; my leg moved so easily and I kept my balance. I took one step after another, and realized the doctors were right. I could walk on my own again.

I burst out crying in disbelief, and phoned my family to tell them the good news. After a couple of hours, my neurologist came to see me and I was able to show him that I could walk independently. The diagnosis of dopamine-responsive dystonia was confirmed.

The past few months have still been hard. I still struggle to walk long distances, and it can start the dystonia in my legs again. I find the pain is still there a lot, even if my legs are functioning completely; I suppose it’s a way of warning me not to overdo it. I’m still really struggling with my fatigue at the moment. I’m having to learn my limitations all over again, but I am getting there.

Now I think back and wonder if there were previous signs about this condition. When I was younger I walked around on my tiptoes without realizing, which I’ve seen can be a sign. I also had both knees operated on when I was 17, which I previously thought was due to hypermobility syndrome. But the most worrying thing is that I had occasions in the past of unexplained temporary paralysis in my lower limbs. The longest it ever lasted was less than 5 minutes and, we have never known what caused it.

I see a professor in London who is an expert on dopa-responsive dystonia next month. It can’t come soon enough. I just want to find more out about the condition and what it means for my future. I’m optimistic that it won’t stop me getting what I want from life. With time I’ll learn how to manage it better, but I know it won’t be easy.

I’m starting to get my life back together now. I’ve started going out more, applied for a job in administration as I can’t go back to anything too physical, and I’m starting to feel more positive again. I’m just grateful that a tablet has given me back my life. Who’d have thought it possible?

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