Being Diagnosed

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I sat down, watched as my neurologist opened my chart and then I waited. I felt my heart jumping out of my chest; “be good news, let it be good news.” That’s all I remember going through my head. He looked down at the papers in front of him; drawing his hands together he linked his fingers and took a deep breath in. Before looking me straight in the eyes, his expression changed. His face dropped. “Shit.” I thought to myself.  I knew by the look on his face that he didn’t want to tell me the news as much as I didn’t want to hear it.

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He began to explain to me that the protein they were looking for in the lumber puncture was positive for the one commonly found with Multiple Sclerosis. I froze; my sense of time was non-existent. My mind went completely blank. I remember these thoughts rushing through my mind; “What do I do now?” “What would happen to me?” I can recall a strange “play” dramatize in my mind. I was like the damsel in distress, sitting on a chair in the middle of the room. The room started to get smaller and smaller, fear and uncertainty began to set in. Can you say “overwhelmed”?

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After what seemed like decades, I felt my head begin to nod. I could feel a soft smile wipe across my face and next thing I know I’m hearing my voice, its saying; “okay. It could be worse.” I wasn’t thinking; these words were just coming out of my mouth. It was like an automatic reaction. Who was saying this? Why are my lips moving and where is the sound of my voice coming from?

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Next thing I know my neurologist began to explain the different types of treatment that were available to me. His mouth was moving, but, at that time I remember thinking “I’ll just walk out of the door and when I come back in we’ll try this again.” Yeah, good logic, Karolyn! Don’t be stupid!

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Suddenly, I’m sitting in the car, texting and calling people while being totally absent minded.  “I have MS.” I didn’t even know what it was. Now I’ve just been told that I have it, this was surely just a dream? From then on the day just blended together. Time still had no meaning to me. I recall repeating to myself; “everything will be okay”, just for reassurance and a sense of calm, I think. The last thing that I remember from that day is going upstairs to my room and crying for what felt like hours. Tears rolled out of my eyes until I had no more tears to shed. My whole world had just crumbled and started to suffocate me. “How am I supposed to deal with this?” “What will MS do to me?”

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It’s pretty safe to say that my initial reactions was denial, shock, fear, uncertainty and most importantly, un-fucking-lucky!

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Over the next few days I started to feel a lot of hatred towards myself. What was wrong with me? Had I done something to deserve this? Was Karma just giving me the finger? Then it clicked. There was a voice inside my head that shouted “shut the fuck up and grow a pair!” You know what? I’m damn well glad that I came to that assumption! What in the world was I thinking? Was I a depressing bitch or what? Feeling all sorry for myself was only making things worse! For some unknown reason I was chosen to carry the burden of Multiple Sclerosis. So, I decided, I’ll carry it with pride and by no means was it going to change who I was! I am me NOT Multiple Sclerosis.

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I could have been given 6 months, that’s what I’d tell myself. Don’t get me wrong, it could have been a hell of a lot better too! But, what was this negative attitude doing to me? What was it doing for me? Sweet fuck all, that’s what! From then on, I changed how I felt about my diagnosis. It wasn’t the end of the world. It wasn’t life or death. It was just something that I had to adapt to. Humans are experts at that, after all. So, I caught my upset, denial, uncertainty and hatred, locked it into an imaginary box and replaced those feelings with unicorns, rainbows and marshmallows! Ha..yeah..no. I just took MS in my stride. I wanted to show everyone that I could do it. Multiple Sclerosis was NOT going to defeat me. I would show people that I am stronger than my diagnosis and something as little as MS would not stop me!

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I still get bad days, we all do. With or without MS. I just get back on my noble steed and continue towards the sunset! Laugh and be merry! And all of that shit.

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Mo Scéal – Before My Diagnosis

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The most prominent thing I remember over the past few years was always being tired. No matter how much sleep I got, no matter how I tried to relax; I would always struggle with lack of energy. Everything from yawning, lack of concentration, focus levels practically depleted and no enthusiasm whatsoever. To be honest, I never really thought that hard about it. I just thought I was lazy!

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The first time I remember feeling weird (this is the only word that aptly describes what you feel when relapsing with MS!) symptoms was in June of 2012. At the time, I had no idea that or if it was anything to do with Multiple Sclerosis. I’m not going to go into details about these symptoms yet, I’ll be saving that excitement for a separate blog! Anywho, the whole right side of my body went numb. Yes, ALL of my right side and yes; NUMB. This lasted a little over 6 weeks. I visited the ER with hopes of someone telling me what it was. The doctor there said that he was “puzzled” and thought that maybe it was “viral”. Good job, Doc. Good job.

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In December of 2012 I had my first experience with optic neuritis. This is a condition where inflammation of the optic nerve occurs and it causes a complete or partial loss of vision. Luckily enough, I only had partial loss of vision for about 4 weeks in my left eye. Can you say “annoying”? As if thinking I was going blind was bad enough, in the first 2 weeks of January 2013 I got what is known as “spasticity”. This was by far the toughest relapse I have experienced to date.

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I know what you’re thinking “wow, has she got a good memory or what?!” 😉 But, stop, you flatter me!

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So, on the 15th of January I was admitted to hospital. Suffering from severe muscle spasms on the right side of my body, I would spasm every 15 minutes. Whenever I would change posture, another spasm would “activate”. Let’s just say that it was not very pleasant. Long story short, they took blood tests, did a lumber puncture, and I had 3-4 MRI’s taken, EEG’s and ECG’s, the lot! Eventually, I was put on a 3 day dose of steroids and was released on the 21st of January 2013.

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On the 7th of February 2013 I was officially diagnosed with Relapsing-Remitting MS.

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My next blog will focus on my diagnosis and how I felt, acted, thought etc.