When MS Gets the Upper hand

No matter how hard you try, staying strong isn’t always an option. Sometimes the disease and everything that goes with it just overwhelms you and you break down. You try to bottle things up, deal with them as best you can, but, every now and then it becomes too much. It feels like a heavy burden is weighing on your chest. It’s not that you want to give up or give in; it’s just that your body, physically and emotionally, can’t take anymore.

Multiple Sclerosis sickens me, literally. I find that one of the most difficult parts about this disease is its invisibility. Although you can’t tell the uproar that my body is going through, I most certainly can feel it. Yes, it makes things easier to hide and to pretend that everything is okay, but, it also leads to people questioning your credibility. “Does she really have a headache?” “She can’t be dizzy again.” “She hardly feels that all the time.” “No one is always that tired.” If only you knew, if only you had an iota of how MS makes me feel. Some days I can go about my business and give the impression that I’m “normal”, but, then I go through a phase where Multiple Sclerosis takes over and there is nothing I can do about it. I can’t speak for everyone with this disease, but for me, these phases are hard, disheartening and soul crushing.

There are times when MS breaks you down physically. You’ve used up all of your energy and now you have to stop everything and charge yourself up for the next few weeks. That’s what it feels like for me. At the start my energy levels are at about 90% (I don’t think I’ve ever seen 100%!). They decrease every day; some days use up more energy than others. No matter how much I sleep or rest those levels never increase significantly. Being tired the majority of the time is something one can never get used to. Especially with MS related fatigue. One minute my energy levels are at 85% and without warning they crash down to the mid-forties. Imagine trying to charge your phone or laptop off of thin air, that’s what sleep and rest feels like for me. I begin to slow down, thoughts become sluggish, concentration is near impossible, and movement requires more and more effort. Doing nothing merely drains the life from my battery. It’s physically exhausting.

As you can imagine, when you are physically drained you start to get annoyed because you can’t always do the simple things. Tying your shoe laces is like running a marathon, keeping your eyes open is like a game of tug-of-war between your upper and lower eyelids. It gets irritating when you think about how people are deceived into the idea that patients with MS can “live a normal life”. Enlighten me, how is fighting with your own body normal? You go through stages. You start off determined not to let this disease stop you from doing what you want to do. Then you have to slow down, but, you’re still adamant on doing as much as you can to the best of your abilities. Once this phase is over you feel your motivation decreasing, you’re emotionally shattered from trying to cheer yourself on and not give in to the illness. By now the disease is winning. You feel defeated and pathetic. “Why can everyone else do this but I can’t?” “If it wasn’t for MS I would be able to take the stairs.” “If it wasn’t for MS I would be able to drive to the shop.” “If it wasn’t for MS I would be able to hang out with my friends without having to cancel or back out at the last minute.” “If it wasn’t for MS people wouldn’t pity me.”

Multiple Sclerosis preys on your emotional stability, or lack thereof. Once your battery is completely dead there is nothing more you can do. You give in. You let the illness take over. You feel miserable, physically, mentally and emotionally. It all becomes too much for you to handle. The fatigue, the special treatment, the heat intolerance, the emotional mayhem, the dizzy spells, the blurred vision, the spasticity, I could go on and on. They all build up like water behind a dam. When there is too much pressure on the dam, cracks begin to appear. As time goes on those cracks get bigger leading to holes. Sure enough those holes lead to the dam’s demise. It collapses and suffocates under the immense force of the water.

Having MS is not easy. I wasn’t told otherwise. That being said, I wasn’t warned about the vast struggle that I would have to face either. People forget that I have Multiple Sclerosis because I can do “normal” things. They’re not normal for me; I can’t go as fast or work as hard. I can’t make plans too far into the future in fear of having some sort of a flare up. You get tired of feeling tired all of the time. You feel sickened by the fact that MS singles you out and makes a show of you when you’re at your most vulnerable. It grabs a hold of your heart and squeezes it tight, reminding you that MS has not left and will not be leaving anytime soon.

I’m all for positivity and not letting MS get the better of me, for too long anyway. Sometimes that’s a lot easier said than done though. Sometimes MS wins. Sometimes you have to let it take over, so that you can try your best to recharge your batteries and give MS a run for its money. Or myelin (horrible joke..). Usually after this awful phase I’m back up on my feet, gloves on, ready to kick MS’s ass and put it back in its place. Unfortunately, you have to go through hell first.

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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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