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.

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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