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.

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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Sometimes I Forget That I Have a Chronic Illness.

As weird as it sounds, every now and then I stop and think “oh yeah, I’ve MS.” I know that it seems funny, but, it’s essentially a good thing, it means I’m in good health! ..Or plain stupid!

I can imagine that you’re wondering how on earth I could forget something so real and prevalent in my life. Lately, things have been going well for me with regards my health. In contrast to this time last year I’m like a different person! I don’t know myself these days. My fatigue levels have decreased significantly, making it so much easier for me to do the everyday things that I couldn’t do before. I’m beginning to be able to do the little things that I couldn’t do this time 12 months ago. Things like staying up late, going on nights out with my friends, doing more activities and still being able to carry on for the day (or most of). It’s still a bit surreal though, trying to picture myself doing all of these things when not so long ago just thinking about doing them made me tired.

This sounds all good, but, when that “thought” crosses my mind and the feeling sinks in, I come crashing back down to reality. I do have MS, it hasn’t gone anywhere. It’s the little reminders that can be the worst. I’m visiting a friend’s house; I start to feel too tired to drive home, so I want to stay the night. That’s all fine and dandy, but, then all of a sudden it clicks. My medication is at home, I’m not as normal as I thought for that split second. Yes, I could take the meds when I get home the following morning, but that’s not my point here. What I’m trying to say is that I sometimes forget that I even have simple vitamins to take because of my MS, let alone my treatment medications. I know that lots of people are on medication, different tablets for different things. But, this time 18 months ago I was on absolutely nothing, and now all of a sudden, in order to stay “well” I need to pop a few pills every morning. It’s a weird feeling, forgetting something that is a big deal.

It can be pretty bittersweet, forgetting something so serious. For example, if I wanted to do a certain thing that entailed getting a medical, would the fact that I have a chronic illness mean that I’d fail on site? Or maybe I’d have that go against me and ultimately cause me to fail the test? Small things like that slip my mind sometimes. Don’t get me wrong, I’m not going to drop my chin and sulk about it. If it’s not meant to be it’s not meant to be. They just missed out on having an amazing person on their team because they thought that she wouldn’t be up for anything due to the simple fact that I have a long term illness. You know, because I’m awesome and stuff!

Don-t-hate-me-cuz-I-m-AWESOME-penguinangel-24752236-499-431It can suck to be brought back down to earth and be reminded that I do have Multiple Sclerosis. But, this disease is clearly not affecting me badly enough for me to be sitting in a dark corner and crying about my life. I’m doing what every “normal” person is doing. Perhaps I have to move slower than your average “healthy” person, but I’m still doing the same thing as them. I’m still capable of driving, going out and having a good time, going abroad, exercising etc.

Life with a chronic illness isn’t all that bad for me at the moment. Naturally, I have bad days where everything isn’t so great. For the most part though, I feel “healthy”, as healthy as I can be anyway. It’s nice to act like a normal 22 year old, even if it’s just for a few more weeks or days. I plan on enjoying every bit of it and forgetting that I have MS for as long as I can!

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.

dr927h

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