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.

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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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Numbness in Multiple Sclerosis

An important thing to note about the lovely disease that is MS is that no two people are the same. Meaning, no two people have the same exact symptoms. Some patient’s symptoms get better, leave and then come back to say hello again. Others go and some more linger. It all depends on the luck of the draw! This post will focus on how numbness, paraesthesia and tingling felt and feel for me. Numbness is a very common symptom in MS. Whoop whoop..!

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What is numbness? Well, you’d be surprised how similar this feeling is to me as it is to you. The basics; have you ever felt numb? Have you ever woken up from lying on your hand all night and it feels all weird? Have you ever experienced pins and needles? Surely you’ve had at least 1 of these sensations! Well, now we’ve the guidelines down, let’s go into the details.

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Numbness happens when the nerves that usually transmit the various sensations either gets interrupted, disturbed or just doesn’t get sent at all. Because of this, sensations in that particular area are either lacking, not as prevalent or non-existent. Now, this feeling, or lack thereof, can affect a small enough area like the palm of your hand, a finger, a thumb, or it can go big and affect entire limbs all at the same time. For the most part, it’s just an annoying, frustrating feeling! Imagine feeling this for around about 6 week’s non-stop. NON-STOP. Fun, fun, fun.

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Numbness comes in different sensations. Some people describe it as not being able to feel anything at all. So, I’ll explain that sensation first. Have you ever gotten a numbing injection from your dentist? You can’t feel that certain part of your mouth, at all! Imagine sitting on your hand for about 45 minutes. One, it would be kind of sore, two; it would feel fat or swollen, wouldn’t it? That is how it feels. Your hand feels puffy, uncomfortable almost as though you can’t close or operate it properly. But, you have to imagine that although you can “feel” this sensation, you’re not feeling 100% as you should do if you were not numb.

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What my consultant would do is give me a little prick in my fingers. If I hadn’t been watching where he was poking, I wouldn’t have been able to be 100% certain as to where he was piercing me.  With this numb feeling, it proves hard to get a proper grasp on things such as forks, your toothbrush, simple things like tying your shoes and writing notes etc. You could see that you are holding such tools, but, you just can’t feel it! Be careful, are you holding it too lightly, too rough? It’s impossible to tell!

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I went numb in June of 2012 for the very first time. At first it started in my right thumb, but, within days it had spread all over the right side. It was numbness, and tingling. I had slight difficultly eating. I wasn’t diagnosed at this time, so it was pretty confusing when all of the right side went numb; including up my neck and the right side of my face. I’d bite my tongue, bite my lip, but, I wouldn’t feel it until I tasted the blood. Nice, huh? Luckily I only did this a handful of times. Being extra careful while eating and that kind of thing took a while to get used to, but, I did it. It was pretty weird eating different foods at varying temperatures too. I could only feel half of what I was eating, if that makes sense! I could feel the heat or cold on the left side of my mouth, but, nothing like that on my right side! Sounds pretty dangerous..!

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During this period of numbness I was haunted by the feeling of tingling and pins and needles! Remember I said to imagine sitting on your hand for 45 minutes, then it feels sore and swollen. Now imagine the blood about to rush back into your hand, but, it would never “climax”. It was just that repetitive feeling of blood gushing back to where it should be; continuously giving you false hope of the pins and needles ending. It would drive anyone insane! Constantly wondering when this tingling would go away, wondering how you could feel numb and yet feel pins and needles at the same time? Stop contradicting yourself, Multiple Sclerosis!

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Another feeling of numbness that I can describe would be having less sensation in that certain area. For example, I’m numb on my right side. My left feels 100% of anything it touches. My right would only feel about 20-30% of that which touches it. Sometimes, feeling temperatures would be difficult. I wouldn’t be able to feel the different between hot and cold water while washing my hands. So, I wouldn’t be able to tell if I was burning my hands, or freezing them off!

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Up until this January 2014, I have never experienced numbness without tingling, or pins and needles. This time, heat came to visit me. It started on the right side of my back. You know when you take your t-shirt or pants off of the radiator and put them on? It’s nice a warm. That’s how it started, but, it didn’t cool down. I was confused because I took my shirt out of the cupboard, which is not hot! I thought no more of it, woke up the next morning (Tuesday) and the whole of my right side, bar my face, was numb and hot. No tingling, no pins and needles, just a constant warm feeling. The sensation on this side was much less prevalent than my left side (which was arguably perfect). I did not feel swollen like I did with the tingling that accompanied the numbness as explained above.  It just felt hot! Sometimes it would feel hotter, other times it was just warm. It just depended on my illness’ mood! Another thing that was weird about this numbness was if I brushed off of something metal it would feel like magnets were under my skin and being sucked toward that metal object! Ah, how MS confuses me so. It’s safe to say, that this relapse with numbness was the least pleasant I’ve experienced.  It’s the first time I actually felt pain shooting down my right leg. Walking would hurt and muscles would just ache. My clothes rubbing off of my skin would feel like nails were being dragged along it. Touching a certain part of my right side, like lightly poking it, would feel like I had a massive, fresh bruise on that area. It was sore, it even felt touch was extra sensitive. Contradicting yourself again, Multiple Sclerosis!

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Over all, I would explain the numbness as extremely uncomfortable, annoying and just plain frustrating! I just had to ride it out, which sucked because self-amputation was a serious thought at one stage or another!

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