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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Living with an Invisible Illness

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Living with an invisible illness is tough. Many of us have the understanding that if you feel sick you must also look sick. But, that is not the case for someone who lucky enough to have one of the various invisible diseases, like myself and Multiple Sclerosis. Things are not always as they seem.

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People have a set expectation. If you are sick, you should look sick. But, let me say this to you: never judge a book by its cover for things are not always as they seem. People find it extremely difficult to believe and understand what they cannot see. Many of them think things only exist when they can see it first-hand. How can one show you what cannot be seen? In my experience, this is the hardest thing for others to understand. All of this being said; there are of course people out there who take my word for it. Who believe that I am suffering from X, Y or Z. Though they may not understand it completely, they try.

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When we were younger the majority of us had an invisible friend. How did you feel when someone told you that they were not real? That was heart breaking; people would often try to convince you that there was nothing there. If they could not witness it with their own eyes then that meant it did not exist. They made you feel like a liar, even though you were fully convinced that your invisible best friend was real, just as real as the grass is green and the sky is blue. Well, that’s kind of how it feels for me, someone with an invisible illness. Living with an invisible illness is very difficult. You have to explain the same thing to different people all of the time.

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Let’s create a scenario for simplicity’s sake. If you came home with a black eye and a slit lip people can see it. It’s a pretty visible injury. They understand this situation because it looks sore, and because they can see and relate to that kind of situation. They believe you because they have witnessed it for themselves.

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People relate to this scenario because they can see your injuries. They understand (to a degree) what you are going through because your symptoms are on the outside, visible for the world to see. Their eyes are telling them that what has happened to you is real. You go to college or work and your classmates/colleagues feel sympathetic towards your bruised eye, they notice your slit lip in an instant.

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I’m sure you understand by now what I’m trying to say. The main issue I have with MS and the fact that it’s an invisible illness is that people don’t believe you, or some may think that you’re lying to get out of doing something or going somewhere. Anyone who knows me personally knows that I wouldn’t beat around the bush, if I have no interest in something I will make it clear to you!

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Another problem is looking “well” when you feel like the definition of misery. I guess in a way it’s a good thing to look “healthy” even when you feel like you’re dying, but, on the other hand it’s very hard for people to believe that you are unwell because they can only see you as looking healthy. Even though I could be numb all down my right side, people would almost “brush it off” because they can’t see it with their own eyes they just have to take my word for it.

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When people ask me; “how are you?” I automatically say that “I’m fine” or “I’m grand” because that is a hell of a lot easier than explaining how I really feel. Maybe if people asked “how do you honestly feel?” they know that I’d give them a long answer. “I feel like pure shit. I’m sleepy, I have no energy, I can’t concentrate, my left leg is numb, my right leg is burning, I’m having muscle spasms in my left arm and my right arm has non-stop pins and needles. On top of that I haven’t had a goodnight’s sleep in weeks, my whole body is shaking and I still have to try and go to college tomorrow.” This is just an exaggeration, but you get my drift! All in all, the shorter answer is easier and better for everyone, isn’t it?

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It’s tough when you have to take the day off of work because you can’t feel your right hand. It’s tough taking the day off of college because you’re so exhausted that you can’t stay awake or concentrate. It’s tough when you have to reject or cancel plans because you feel so sick and crappy. It’s tough when you worry about what others are thinking. At the end of the day, you have to live with it. You have to get on with life and not worry about what others think. That part is the toughest of all; convincing yourself that others who judge you do not matter. Their perception of you means absolutely nothing, and yet, you believe that because you feel sick on the inside you must look sick on the outside. Or at least, that’s how others make you feel.

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Living with an invisible illness is hard. Coping with an invisible illness is hard. I have to work harder than my illness. My attitude towards it can make all the difference. It’s important for me not to let the opinions of others get to me. When the going gets tough, the tough get going!
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