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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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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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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