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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Cognitive Defects

Cognitive changes are common in people with MS — about half of MSers will develop some type of problem(s) with cognition. When I say “cognitive” I’m referring to things like speech, memory, concentration and attention etc. Everything that one takes for granted until things start to get a bit difficult; mixing sounds when speaking, forgetting things more than usual, having the attention span of a gold fish. A person may experience difficulties in only one or two areas of cognitive functioning or in several.

For me, this aspect of MS is worsened when I’m fatigued. It is so frustrating! Simple things like remembering a word for something can be so challenging. This is called verbal fluency a.k.a. word-finding. There’s nothing worse than having the sentence loosely formed in your head, but, then when you try to find the word for said object and you can’t is just so unfair! It feels like you’re searching a dictionary where the one word you are looking for has been scribbled out in the book. It no longer exists in your brain. You know it’s there, you just can’t see through the permanent black ink covering it. I have to think really hard about it and the harder I think, the tougher it gets to find the word! It’s like playing one of those claw games; you know where you have 3 chances to pick up the fluffy toy? Sometimes you think you have the word. You’re so close! Almost there..! And you drop it. It makes me so furious! And of course, the angrier I get the harder still it is to find the word! Until I give up, and just hope to God that the person knows what I’m talking about. Another aspect of this is mixing up word sounds. In my head it says “speak”, but, I say “speech”. Who knew that something so simple could be so annoying?

My memory doesn’t function at 100% either. If MS can take it, MS will take it. These days I find myself writing things down on my phone or making lists so that I don’t forget anything. I put regular reminders on my phone, things like appointments, what medication to take and when etc. I notice more and more lately that I forget things that I need to do, like putting socks on, getting cutlery or turning off lights and switches. I understand that everyone does this once in a while, but, I do them more often than I care to admit. At times I forget that I have tasks already done and yet I’d go to do it again anyway, only to figure out that I did it just a few minutes ago. Brushing my teeth is a good example; I can’t even tell you how many times I go to brush my teeth! Annoyingly, now and again I can’t remember if I have gone to the toilet or not. How flucked up is that?! (I’ve no shame lads, I’ll tell you anything 😉 ) I could tell you the same thing three or four times simply because I forgot that I told you the time previous to that. It’s really simple things like that, that can mess with your mind. I feel like I’m losing it every so often; redoing things that I did only minutes beforehand. It makes me feel really stupid and fairly pathetic to be honest. Sometimes I can see the funny side of it though; I mean it’s comical sitting on the loo and thinking “wait, why don’t I feel like I need to go?” How in the world could you forget peeing?! Oh, you would be surprised what MS can do to one’s short term memory.

I find that concentrating can be awfully strenuous as well. Giving my complete attention to one thing is much more demanding than it should be. I could read the same line over and over again, but, no way in hell would my brain register it. Someone could be talking to me, but, I would only hear muffling. I have to stop them and ask them to repeat themselves, sometimes more than once! It’s really embarrassing having to ask them to say it a third time, especially when what they have said still doesn’t register. To avoid any tension you just agree and let them move on, hoping that you might be able to pick up what you missed during the rest of the conversation. Giving things divided attention can be pretty difficult for me. It’s hard enough for me to concentrate on one thing, don’t mind two or three! Don’t ask me to text and watch TV at the same time, reading while listening to music isn’t my forte either. Don’t expect me to talk to or listen to you while I am painting my nails! For the split few seconds that I am brushing my hair, I have no idea what you just said to me.

All in all, MS likes to make a fool of you. As if having speech problems wasn’t bad enough, why not let me have memory and focus problems too! Sound MS, you’re a legend.

My Experience with Fatigue

Why do people with MS struggle with fatigue? No one knows. It’s one of the most common symptom found in people with Multiple Sclerosis, it affects nearly 80% of patients with the disease. Personally, I go through 2 different types of fatigue. One is general sleepiness or feeling mentally tired; the other is physical and mental fatigue. I’ll be doing my best to make it as relatable as possible so that everyone can get a better understanding of how it actually feels.

Quick basics about MS fatigue:

–          Usually happens on a daily basis

–          Might happen early in the morning, even if you’ve had a goodnight’s sleep

–          Tends to worsen as the day progresses

–          Tends to be aggravated by heat and humidity

–          Comes on easily and suddenly

–          MS fatigue can generally be much worse than “normal” fatigue

–          Is more likely to interfere with daily responsibilities and activities

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So, let’s get into the description of how it feels for me. For the sake of this blog I will divide both types into A (general fatigue) and B (physical fatigue).

Fatigue A:

This first type is a general feeling of tiredness. Imagine going a full night without sleeping. By morning you’re tired, by afternoon you’re dying for a nap, by evening you’re pure exhausted. You know the feeling you get after doing an activity for more than 3 or 4 hours, for example, writing an essay, studying for an exam, and working. After you spend so much time doing these activities without a break you find it more and more difficult to concentrate on anything else. With every activity done you drain more and more energy from your body.

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Sitting down, you stare off into space. Blanking out like this is a regular occurrence. Concentration levels are low and only get lower. Watching TV you start to miss parts of your programme. When did he get shot? When did they score? How did she do that? All you want to do is pay attention, but, ironically that’s the hardest thing for you to do.

A funky thing about fatigue in MS is that one minute you can be absolutely fine, you’re feeling fresh and awake. Then BAM! All of a sudden the life is sucked out of you and you have no energy whatsoever. You have no drive left to do anything; in the blink of an eye you’re exhausted.

Fatigue B:

The second type of fatigue is physical. With this there is increased weakness after repeated activity. This is pretty common with walking and such.

 

Usually when one says that they are tired they get replies such as “you should exercise more. Get some more fresh air. Change your diet. Go to bed early.” Say that to someone who suffers from an invisible illness like chronic fatigue. When someone like me, who suffers from fatigue because of MS, says that I’m tired, I really mean it. I don’t just mean I’m tired let’s take a 10 minute nap and I will be bouncing off of the walls again. Being tired is not the same as being fatigued or exhausted. Thanks to fatigue, my body is lifeless, and like a dead weight. My concentration is non-existent; focusing on one thing for a certain amount of time is extremely difficult. Ironically though, some people with fatigue suffer from insomnia too. I could be energy less, down and withdrawn. But, people don’t get that when I say I feel tired. They automatically assume I didn’t sleep well, whereas, that is not the case for people with MS who suffer from fatigue. We could sleep for days and still wake up tired. I don’t have this feeling every day, but, easily 5 days out of 7.

 

Another side effect of fatigue or “severe tiredness” is lack of enthusiasm. Definitely for me, I lose all interest in everything and anything. Just sitting down staring off into space or lying down in bed is about all I am up to. You could tell me that George Clooney and Beyoncé were downstairs having a cup of tea and I’d not only lack the energy to get out of my bed, but, I’d also give this littlest shit about them. My mind would just be completely blank; I wouldn’t be able to sustain a trail of thought for long. I’d forget what it was that I was thinking about or why I was thinking about it. It’s like when someone talks to you and you can see their lips move, you can hear noise coming from them, but you haven’t the slightest idea what they’re talking about.

 

So, safe to say that fatigue in MS, at least the fatigue I experience, sucks. It’s fine if you have nothing to do and have nothing planned. But, having to turn down invitations, cancel plans and feel like shite isn’t very pleasant. So, next time I say that I’m tired, I really am!

Knowing Your Limit

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I can’t say that I’m an expert in know my own limit, but, at the same time you know yourself when your body is just saying no. As a person with a chronic illness, I’m used to being told “listen to your body”. That’s all fine and dandy, but, then they tell us to “fight it”. Would you make up your mind and just pick one!

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Personally, I find it hard to tell when my body has had enough sometimes. Now and then it could be obvious because I’m either not feeling well, or I’m just so tired that fighting it is not even an option. Before I was diagnosed my body was completely drained non-stop, I just assumed I was lazy and that I lacked in the fresh air department. If my friends were to ask me if I’d go here or there, usually I’d decline. My body just didn’t want to move. For the most part, I’d want to go with them, but, my body had other ideas.

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At this time, I had no idea what was wrong; I didn’t even think anything was “wrong”. Then I was diagnosed. Pieces of the puzzles started to come together. No wonder I couldn’t stay in college for a whole day, no wonder I could sleep all day and night and still not feel refreshed. I realised that I was plagued by fatigue.

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From then on I started seeing things all over the internet saying “don’t let MS defeat you”, “don’t let the MonSter win”; that kind of shite. I didn’t want to be the girl who was always sick. I don’t want people to take pity on me because I have to cancel plans due to my health. I don’t want to use my diagnosis of MS to stop me from doing what everyone else is doing. Unfortunately, there are and will continue to be obstacles for me. I won’t be able to stay up until all hours of the morning partying, I won’t be able to go without a nap during the day; I won’t be able to concentrate as well as others. I know these examples might seem small to you, but, they’re a big thing when you have to watch everyone else do the stuff you want to be able to do.

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I know that I have a limit, everyone does. For me, it’s a little different. I could wake up tomorrow morning and not feel like getting out of bed, but, if I push my limit I can get up and I can get dressed. Simple things that “healthy” people take for granted. That being said, the past few weeks have treated me pretty well, so the getting out of bed part isn’t that much of a struggle at the moment!

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I know that I have to pick and choose between things, it’s either go to the football match or go shopping for a few hours; one or the other. Sometimes I try to push myself a bit too far. I want to be “normal”; I want to be your regular 21 year old girl. I want to go to college and attend all of my classes, I want to meet up with friends and family whenever I want to not whenever my body wants to. I know that my body is begging me not to do it, but, I want to at least pretend for a few hours that I am completely ordinary.

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Sometimes it feels like I might be missing out because I’ve reached my limit and I physically can’t do much more. I don’t want to fall behind or be left behind because of this stupid disease. Occasionally, you can feel like a bother to people. Let’s say I go out to meet a friend at 7pm, but, by 8pm physically and/or mentally I can’t keep up so I have to go home. It sucks. All of this being said, ultimately, no matter how hard I fight it, my body will always win. It can leave me feeling lonely and sometimes a bit isolated, but, I guess I just have to go with the flow.

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I’m not “normal”; I’m not a regular 21 year old. I have a chronic illness and it’s important for me to accept that and to move forward. I might not be up to much, but, I’ll do what I can when I can. Keep the head up, stay positive and concentrate on what you can do, not on what you can’t. Some people might not fully understand why I can’t go here or there, but, tough shit! They’re opinions don’t count and that kind of thing. I’m still learning where my limit is and when to realise that I’ve reached it. It differs from day to day. People who don’t care don’t matter and those you matter don’t care.

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Being a “Fighter”

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People have expectations. You’re either going to be strong, or you’re going to fall. You have to make the decision, will you keep going or will you just shrug and give up? I chose to fight.

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By “fight” I mean that I decided to continue my life and not let the diagnosis of MS define who Karolyn was. Let’s face it; people will still look at me as the girl who has MS. The least I can do is be the girl who didn’t give in. Having MS has done a lot of damage to me physically, but, getting the official diagnosis has also done a lot to me mentally and emotionally. No one can prepare for a life altering condition, not even Brian O’ Driscoll.

1201375-25098613-640-360With Multiple Sclerosis you see the word “fighter” everywhere; “survivor” is pretty common too. I’m not sure if I agree with any of these terms. Everyone is a fighter and everyone is a survivor, we’re just going through different battles and struggles. I simply chose to keep going. Sometimes having stupid MS symptoms like spasticity, numbness and the like can be heart-breaking, so much so that you just have to breakdown. You’ve ran out of gas. Now all you have to do is get some more so that you can keep on going. It’s just a small bump on a long and bendy road known as “life”.

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My fighting and your fighting might have two different meanings. Fighting for me is getting up out of bed when all I want to do is sleep. It’s going to college and concentrating as much as I can to get a good degree. It’s going for a walk even though my body is saying that it’s exhausted. These little things aren’t much to your “average” person. I can’t comment on what others might be fighting on a daily basis, but, I know that for me it’s the little things.

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You don’t need to have a continuous positive attitude, I certainly don’t. Sometimes others try to understand what I’m going through and they are there to help as best they can. Sometimes that’s not always enough. Every now and then it’s you who has to help yourself. You have to walk that extra mile to the gas station and get the fuel you need to keep going. There are days where I am absolutely sick of how my disease makes me feel, physically, mentally and emotionally. Seriously, everyone is entitled to a bad day. I wallow in self-pity for a day or two, but, I get up again.

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Maybe some would call me a fighter, some would call me brave and strong; I call it coping. You get a shit diagnosis, you cry, you take a deep breath and you carry on. Every road has potholes, some roads are worse than others. You slow down, take it easy going over the hurdle, but, always get back on track. “Fighting” is a daily obstacle for some. It can be for me anyway. I can only speak for myself when I say that I am coping, but, let me have my bad days. Nothing can bloom without rain, right?

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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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The Power of Positive Thinking with Multiple Sclerosis

Before you read this blog, I recommend you read the lyrics of this song. If you need a pick me up, some motivation this is the song for you.

Alternatively, you could click here and it will take you to the lyrics.

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Here we go lads, prepare to have your spirits lifted and be granted a new lease on life! No. Don’t be silly. On a serious note, this entry isn’t entirely aimed at people with MS, but, instead everyone can benefit from positive thinking. Changing one negative thing into a positive a day can make a massive difference to you and your perception on life.

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Now, anyone who knows me can vouch for me when I say I was never a happy bunny. Smiling wasn’t my forte (still isn’t..but moving on!). I can safely say that MS has changed my outlook on life. Changed for the best, might I add. Some people were under the impression that I should have been down in the dumps, isolating myself from “life”. Nah, effort. Don’t misunderstand me, I get bad days. Who doesn’t? I pity myself, feel sorry for myself and just feel absolutely fed up. I can’t stress how often I feel sick and tired of always being sick and tired. The most important thing after having days like this, don’t give up. Hop back on your noble steed and keep riding into the sunset.

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Why should you think positively about MS? That’s not the question. Its, why should we think negatively about MS? Look, it’s a crap disease; some people are worse off than others. The way I see it; my Relapsing-Remitting MS is not a death sentence.  I am not dying from this diagnosis. My lifespan is not affected either. So, why be all depressed? I can’t do anything about it. It’s out of my hands. So, take a deep breath and relax!

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“When life hands you lemons..” and all of that jazz. Make the most of what you have. Find something to cling on to and to give you a reason to be positive. It could be as simple as yourself, your mother, your father, a sister or a brother, a teddy bear for all I care! Find that anchor, and don’t leave go.

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The way I see thing is; I could be at home sulking and still thinking; “why me, what did I do to deserve this?” But, let’s face it; being negative is tiring. I’m lazy enough as it is, I don’t need negativity and depressing thoughts to hold me back too. It takes more energy and effort to be negative. When you’re in a negative state of mind you begin to dwell on the bad things. You become blind to all of the good experiences and things that are going on around you, whereas if you think positively you can enjoy the good stuff. You can soak up the “good energy” and that kind of thing.

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Yes, I experience weird ass symptoms, yes I am tired, yes it is hard, frustrating and upsetting, but, let it go. Cry if you have to, scream if you need to, but, don’t do anything stupid like giving up. Wipe away your tears, breath after you scream. Stop. Remind yourself that you are still here! Remind yourself of how lucky you are to be living. Be grateful for what you have.

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It’s very easy to give up. For some reason, finding a purpose to hold on, to keep going and not to give up can be difficult. Think of a reason to be strong. Whatever is it that makes you feel like you can keep going, grasp that purpose and never let go of it. You’ll be surprised how easy life will get after this little step. A little goes a long way, one step at a time and for feck sake, STAY POSITIVE!

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Didn’t I tell you that you’d be inspired and uplifted after reading this? Positivity is easy. Just do it. You’ll thank me when you see the results and differences it will make to your daily life.

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