Fatigue Is Not My Friend

Sometimes I feel that people really don’t quite grasp the concept of fatigue. People assume that you can’t be that tired all the time. You’re sleeping all day? There’s no way you can be that tired. You’re limbs feel weak? I doubt you feel that bad. I can assure you; no one in their right mind would fake having fatigue.

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Multiple Sclerosis in itself is a disadvantage. Doctors always say that I am “normal” and that “I will be able to live a normal life”. I call bullsh*t. MS fatigue is a crippling kick in the nuts. It can affect you in so many different ways. It makes life 10 times, if not more, harder for me. For example, I was in sitting in a lecture, naturally one must hold a pen when trying to write notes. Something that is so simple to everyone else was near impossible for me. I kept dropping the stupid thing on the floor. It’s like my muscles just did not want to cooperate. I was telling myself to hold the pen, get a grip on it and start writing. But, for some reason there was no way my hand would keep its grip. During the stages that I managed to pick the pen up and keep it in my hand, my mind was elsewhere.

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Every time I started to write notes my mind would go blank. What did the lecturer just say? What are we talking about again? I took a look down at my note book to see if I could read the sentence and finish it off myself. It was disheartening and confusing to see that not only did my writing become fairly illegible, but, some of the sentences didn’t make sense. I had skipped words, wrote down the wrong word, misspelt a lot of words. It was so mind boggling that even though I thought I was writing down everything perfect and that it all made sense nothing was right in the slightest. All of a sudden I’m looking at something that I have no recollection in taking down. It’s really frightening, being convinced that you’re doing one thing but it turns out that you’re doing something completely different. I was sitting in a lecture hall full of “normal” people and I just felt sick to my stomach. All because I was tired I couldn’t concentrate, couldn’t hold a pen, couldn’t complete a full sentence. Everyone else that was tired just sipped on tea or coffee. This is not “normal”.

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When I’m this tired my mind doesn’t wander. It just switches off. I’m looking at things, but, I’m not seeing them. I’m listening to things, but, I can’t hear them. I try my hardest to pay attention and to take things in, but, I might as well be a dog trying to meow. When fatigue hits me like this I feel so pathetic. I get so pissed off because no matter how hard I try I can’t do anything with 100% of my being. To be able to give 10% is an achievement for me.

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People don’t understand just how much fatigue affects a person. When they ask how I am and I say that I feel tired, or that I’m a bit weak, I feel like people think that I’m just saying it for the sake of saying it. I know what’s going through their mind; “she can’t always be tired”, “there’s no way she’s still tired”, “tired again, no surprise”. If you ask me how I am, expect the truth. I’m not one to sugarcoat things. Most of the time it feels like people don’t believe me anymore when I say that I feel some way fatigued. It’s almost as though I am the boy who cried wolf. Whereas I’ve never once lied about how I’m feeling. Explaining how I feel takes a lot out of me. I can understand why others with a chronic illness just reply with “fine”. It makes life so much easier and it wouldn’t make me feel as though I’m being shrugged off.

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A lot of the time I feel as though I have to apologise for being so tired so often. That being said, apologising doesn’t feel like it suffices. If I could change how fatigue affects me I would in a heartbeat. If I could go to lectures and take notes like a normal person, I would. If I could do a normal work day, 9-5, and not come home 100% bolloxed, I would. If I could wake up after a full nights sleep and feel 100% rested, I would.

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Life’s a bitch. Believe me when I say that fatigue is a real thing. It’s by far the worst symptom of MS that I have experienced and still do experience on a day to day basis. I can’t imagine feeling refreshed and not feeling tired. The thought of my muscles not feeling weak, the thought of my eyes not burning from sleepiness, the thought of limbs not feeling like cement, the thought of my concentration levels being “normal” are all like a far off dream. Maybe someday the fatigue will lessen, who knows, maybe they’ll find a cure. You have to play with the cards you’ve been dealt. Mine are worn, ripped and stained, but, I’m still playing. I’ve no plan on folding anytime soon.

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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.

MS and Normality

They say that people with MS can live a “normal life”. I have been diagnosed almost 2 years and I disagree with that statement. If by “normal” they mean “restricted”, then sure, you can live said life. Yes, for the most part I am able to do what any other “normal”person can do, but, my abilities are restricted. It’s the simple little things that build up after a while and you start to feel frustrated and not so “normal”.

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I along with 80% of MSers struggle with fatigue. Click here to read my blog on fatigue. This is definitely the most frustrating symptom to live with. Being so tired a lot of the time is far from “normal”. I could wake up a little sleepy, who doesn’t? But, all of a sudden when I get downstairs my energy is zapped! My legs feel heavy, my eyes won’t stay open and I have no enthusiasm or interest in doing anything. Just like that, I’m as good as a vegetable. Now, imagine that I have plans to go to a concert. I have been looking forward to this event for months. I feel like a dead weight and I’m supposed to drive an hour up the road to see this gig. How sh*t is that? I’m sure you understand how utterly infuriating that is!

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Another thing that makes me feel different is when I go to the gym. I have different exercises that I do because my body isn’t able to do the regular ones. I know that its great being able to go to the gym full stop, but, when your programme has to be changed because your balance isn’t great or you get tired much faster than everyone else; it’s a bit of a kick up the hole. I need a fan on me for the majority of the time because I suffer from heat intolerance. Meaning, symptoms can appear while my body is over heated. I usually get dizzy, my vision gets blurry and every ounce of energy get sucked out of me like a vampire sucking blood from it’s prey. Not a very pleasant experience, to say the least. This is frustrating, and most importantly, embarrassing. Having to stop your workout in front of people who are exercising diligently is heart-breaking. I was trying just as hard as they were, but, because of this stupid illness I was forced to stop. How is that anyway “normal”? Why do I get punished for doing something that is vital in keeping healthy as exercising? It makes me so mad. When one is diagnosed with MS one hears a lot of phrases like “you will live a normal life”, “you are no different than anyone else”. How about you tell that to this stupid disease? Enraging. Everyone has a limit, but, mine seems to be lower than Liverpool on the Premier League table. I have to do everything slower. Start off with lower weights, walk slowly as opposed to briskly, and get up from seating positions (on the ground or bench) gradually because of my balance and the fact that I’m prone to dizzy spells. That is not normal!

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Not only do I have to exercise with caution, but, I must choose which career to pursue with care. I’ve wanted to be a teacher for as long as I can remember. Apparently this is the perfect job for someone like me, someone with MS. I can sit down, I don’t have to do a lot of walking, I can do part-time hours, not much stress is involved (allegedly), the holidays, the weekends etc. How is this normal? Having to pick your career based on your health and physical abilities. This disease is unfair, what illness isn’t though? It’s annoying that I have to think about my distant future at the age of 22. I have only just got my degree, now I have to think about things like “What if I relapse?” “What if I need time off to get an MRI?” “What if I have to go home due to feeling unwell?” “What if my medication doesn’t work and I need time off to start my new meds?” All of these questions need to be accommodated for before I can pick the career path that I want to follow. Someone please tell me how this is normal. I understand that many people have to ask themselves questions before they can pursue their desired occupation, but, do they have to ask themselves questions like I do?

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I do still strongly believe in positive thinking, but it can be hard to stay positive all the time. Sometimes the little things build up and you just feel like exploding. You realise that you’re not in fact “normal” and you are in fact “different”. Once you come to this realisation its another step that you have to take in accepting this stupid disease. It’s hard for people to understand the mental turmoil MSers go through. They hear that we can live a normal life and then assume that we are normal. I am not “normal” and I will not be “normal” for the rest of my live. I am different, and its up to me to find a way to live with that. MSers feel the need to do things on their own and keep up with everyone else in order to keep their pride and live up to this “normal” façade that has been created. Its hard for me to ask for help, even though I know that everyone is willing to help me. People with MS feel hopeless when they ask for help, we are not “normal”. We need help, we need understanding, and we need patience. Not just from others, but, from ourselves. If we can’t accept this disease for what it is, negativity will take over and life will undoubtedly become more frustrating and more infuriating. MS is hard to live with. Physically it is heart-breaking, pride knocking and exasperating to boot. I feel that this disease is much harder on one’s mental health than any other aspect. If you can’t stay positive you’re in big trouble. Accept who you are, you have to live with this disease for the foreseeable future. It is not the opinions of others that MSers should worry about, but, the opinions we have of ourselves. If we can’t find a reason to keep going and plough through this illness will eat you up and spit you out without hesitation.

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Life comes with ups and downs. Unfortunately, for those who have MS depression can be a very prevalent symptom. The feeling of being “abnormal” and “different” definitely doesn’t help us. Although we try our best to fit in and be normal, sometimes its just not possible. The mental anguish that one goes through is appalling. Being told by doctors who have no concept of what it is like to personally have the disease that you are normal and just like everyone else makes my blood boil. Yes, I can do as others do, just in slow motion so I fall behind or so that I will never catch up. The pace of my life is far inferior to than of a “normal” person. It is frustrating, but, you have to carry on. You have to live your life, not theirs. One must not compare oneself to another if they are to possess happiness. Keep living. Albeit in the fast lane, or the slow lane; never give up.

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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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