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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Being Diagnosed

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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.

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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”?

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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?

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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!

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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?”

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

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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.

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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! Ha..yeah..no. 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!

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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.

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Navigate Between Individual Posts

Simply click on one of the underlined links and it will take you to your desired blog post.

What Is Multiple Sclerosis?

My Diagnosis – Before

Being Diagnosed

How I Feel About Multiple Sclerosis

Positive Thinking

Numbness in MS

Living with an Invisible Illness

Being a “Fighter”

Knowing Your Limit

My Experience With Fatigue

Sometime I Forget That I Have a Chronic Illness

Telling People Face to Face that I have MS

MS and Normality

When MS Gets the Upper Hand

Cognitive Defects

Mo Scéal – Before My Diagnosis

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The most prominent thing I remember over the past few years was always being tired. No matter how much sleep I got, no matter how I tried to relax; I would always struggle with lack of energy. Everything from yawning, lack of concentration, focus levels practically depleted and no enthusiasm whatsoever. To be honest, I never really thought that hard about it. I just thought I was lazy!

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The first time I remember feeling weird (this is the only word that aptly describes what you feel when relapsing with MS!) symptoms was in June of 2012. At the time, I had no idea that or if it was anything to do with Multiple Sclerosis. I’m not going to go into details about these symptoms yet, I’ll be saving that excitement for a separate blog! Anywho, the whole right side of my body went numb. Yes, ALL of my right side and yes; NUMB. This lasted a little over 6 weeks. I visited the ER with hopes of someone telling me what it was. The doctor there said that he was “puzzled” and thought that maybe it was “viral”. Good job, Doc. Good job.

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In December of 2012 I had my first experience with optic neuritis. This is a condition where inflammation of the optic nerve occurs and it causes a complete or partial loss of vision. Luckily enough, I only had partial loss of vision for about 4 weeks in my left eye. Can you say “annoying”? As if thinking I was going blind was bad enough, in the first 2 weeks of January 2013 I got what is known as “spasticity”. This was by far the toughest relapse I have experienced to date.

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I know what you’re thinking “wow, has she got a good memory or what?!” 😉 But, stop, you flatter me!

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So, on the 15th of January I was admitted to hospital. Suffering from severe muscle spasms on the right side of my body, I would spasm every 15 minutes. Whenever I would change posture, another spasm would “activate”. Let’s just say that it was not very pleasant. Long story short, they took blood tests, did a lumber puncture, and I had 3-4 MRI’s taken, EEG’s and ECG’s, the lot! Eventually, I was put on a 3 day dose of steroids and was released on the 21st of January 2013.

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On the 7th of February 2013 I was officially diagnosed with Relapsing-Remitting MS.

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My next blog will focus on my diagnosis and how I felt, acted, thought etc.

What is Multiple Sclerosis?

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You can search the internet for days and look for the definition of MS. Trust me, I’ve been there! Looking at so many different explanations it only confused me more. So, let me try to dumb it down for those of us who are not studying medicine!

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Multiple sclerosis or MS is a chronic disease that affects the brain and spinal cord; these are two components of the central nervous system.  What is a Chronic Illness you say? It is a long-lasting, long duration condition. Chronic diseases can be controlled, but, unfortunately there is no cure, as of yet (let’s stay positive!). Anywho! Because of the affect that MS has on the brain and spinal cord a lot of people have difficulties, such as, impaired or loss of:

–           muscle control

–          vision

–          balance

–          sensation (numbness, tingling, burning, itching etc.)

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Want to know the worst part? Our own immune system is the thing causing all of the damage to our nerves in the brain and spinal cord! As a result of this, Multiple Sclerosis is known and assumed to be an autoimmune disease.

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Are you still with me? You can do it, keep going!

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Now, an autoimmune disease is basically where your body’s immune system (which is usually our protector) targets and destroys foreign substances in your body (like bacteria and such). For those of us lucky enough to have MS (yeah..), this so-called “protector” makes a silly mistake and attacks our good/normal tissue in the brain and spinal cord.

Now, remember how I was talking about the symptoms above? This next part will explain how people get these weird symptoms.

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So, let’s talk about the central nervous system (CNS), shall we? This is made up of nerves, these nerves act like the systems messengers. For example, your brain tells your hand to grasp the handle of your cup of tea, so, you do just that. These nerves are surrounded by a type of fatty substance called myelin. This little stuff helps to protect said nerves and helps deliver the various messages to parts of our body. From A to B; the brain to parts of the body. Like text messages or emails! These little messages control muscle movements like walking, talking etc.

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Because of this, the myelin breaks down and/or becomes scarred. This distorts or even blocks the flow of messages, which results in the many symptoms of MS. Sounds fun, aye? Many people explain MS like a faulty electrical flex on a kettle, or like a faulty wire.  The nerve can be compared to an electrical cable; the axon, or nerve fibre that transmits the nerve impulse or message, is like the copper wire; and the myelin sheath is like the insulation around the wire. If the insulating flex breaks, it exposes the wires underneath making them more vulnerable to damage.

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I hope that I helped shed some light on the way Multiple Sclerosis works on the human body!