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”.


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!


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!



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?


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.



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.



Knowing Your Limit


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!


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.


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.


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.



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!



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.


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.


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.



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.


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.


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.


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!



“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.


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.



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.


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!


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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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!


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


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”.


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.


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. 


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!


Being Diagnosed


I sat down, watched as my neurologist opened my chart and then I waited. I felt my heart jumping out of my chest; “be good news, let it be good news.” That’s all I remember going through my head. He looked down at the papers in front of him; drawing his hands together he linked his fingers and took a deep breath in. Before looking me straight in the eyes, his expression changed. His face dropped. “Shit.” I thought to myself.  I knew by the look on his face that he didn’t want to tell me the news as much as I didn’t want to hear it.


He began to explain to me that the protein they were looking for in the lumber puncture was positive for the one commonly found with Multiple Sclerosis. I froze; my sense of time was non-existent. My mind went completely blank. I remember these thoughts rushing through my mind; “What do I do now?” “What would happen to me?” I can recall a strange “play” dramatize in my mind. I was like the damsel in distress, sitting on a chair in the middle of the room. The room started to get smaller and smaller, fear and uncertainty began to set in. Can you say “overwhelmed”?


After what seemed like decades, I felt my head begin to nod. I could feel a soft smile wipe across my face and next thing I know I’m hearing my voice, its saying; “okay. It could be worse.” I wasn’t thinking; these words were just coming out of my mouth. It was like an automatic reaction. Who was saying this? Why are my lips moving and where is the sound of my voice coming from?


Next thing I know my neurologist began to explain the different types of treatment that were available to me. His mouth was moving, but, at that time I remember thinking “I’ll just walk out of the door and when I come back in we’ll try this again.” Yeah, good logic, Karolyn! Don’t be stupid!


Suddenly, I’m sitting in the car, texting and calling people while being totally absent minded.  “I have MS.” I didn’t even know what it was. Now I’ve just been told that I have it, this was surely just a dream? From then on the day just blended together. Time still had no meaning to me. I recall repeating to myself; “everything will be okay”, just for reassurance and a sense of calm, I think. The last thing that I remember from that day is going upstairs to my room and crying for what felt like hours. Tears rolled out of my eyes until I had no more tears to shed. My whole world had just crumbled and started to suffocate me. “How am I supposed to deal with this?” “What will MS do to me?”


It’s pretty safe to say that my initial reactions was denial, shock, fear, uncertainty and most importantly, un-fucking-lucky!


Over the next few days I started to feel a lot of hatred towards myself. What was wrong with me? Had I done something to deserve this? Was Karma just giving me the finger? Then it clicked. There was a voice inside my head that shouted “shut the fuck up and grow a pair!” You know what? I’m damn well glad that I came to that assumption! What in the world was I thinking? Was I a depressing bitch or what? Feeling all sorry for myself was only making things worse! For some unknown reason I was chosen to carry the burden of Multiple Sclerosis. So, I decided, I’ll carry it with pride and by no means was it going to change who I was! I am me NOT Multiple Sclerosis.


I could have been given 6 months, that’s what I’d tell myself. Don’t get me wrong, it could have been a hell of a lot better too! But, what was this negative attitude doing to me? What was it doing for me? Sweet fuck all, that’s what! From then on, I changed how I felt about my diagnosis. It wasn’t the end of the world. It wasn’t life or death. It was just something that I had to adapt to. Humans are experts at that, after all. So, I caught my upset, denial, uncertainty and hatred, locked it into an imaginary box and replaced those feelings with unicorns, rainbows and marshmallows! I just took MS in my stride. I wanted to show everyone that I could do it. Multiple Sclerosis was NOT going to defeat me. I would show people that I am stronger than my diagnosis and something as little as MS would not stop me!


I still get bad days, we all do. With or without MS. I just get back on my noble steed and continue towards the sunset! Laugh and be merry! And all of that shit.