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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How I Feel About Multiple Sclerosis

How do I really feel about my diagnosis? “FUCK YOU MS!” Does that suffice? I’m not going to butter it up!

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You know how they say “don’t look that up online”? I did it anyway.

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When I first searched for MS on the web I saw so many different perceptions, opinions, memes and the like towards the disease. Silly things like “MonSter”, “Must Stop”.

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You know, negative imagery. What do these do for the attitude of people, like me, who have MS? These are just damaging people’s views on themselves. For me, there was no sense of help or positive unity through these images, posts and such. These phrases cause more harm than good, in my opinion. I just didn’t feel this way about my diagnosis. I didn’t want to have such a negative view and outlook on my Multiple Sclerosis.

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I started to think “where are the phrases like “My Strength”, “My Success”, “My Support”? Why were these slogans not spread all over the internet like the rest?” Yes, it sounds like I’m a life-loving hippie, dancing around loving the earth, but, by God am I not! I just simply have decided not to be one of those people who have been totally affected by my diagnosis. 

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tumblr_lkxrcoHjTv1qdi47rMS is a stupid disease whereby my own body is attacking itself, how ridiculous is that? It’s completely annoying, but, also laughable. Multiple Sclerosis is the cause of these weird symptoms that I feel. It’s the cause of my sudden loss of control over my own body. My muscles start to spasm, my limbs go numb, they tingle, they burn, and they itch. The worst part about all of this; I can’t do anything about it.

images (1)It makes me feel pretty helpless. My own body, my physical being temporarily stops taking orders from me; the so-called boss. Like a rebellious teenager. I would love to clatter it and lock it into its bedroom. No TV, no phone and worst of all, no internet! Oh, life would be too easy. That is the major thing I find about this illness; control, authority and the final word are not mine. Not physically anyway. Mentally, I am the boss, I am in control and I do have power.

Power and control are big things for me. It always has been and always will be. It can be hard, certainly frustrating and most of all; disheartening. I feel like I’ve lost a part of my sense of self. This disease has made me feel incapable, incompetent and vulnerable. Ironically though, I’ve come out of the past 12 months stronger. Mentally anyway, because physically I’ve always been fucked!

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