Living with an Invisible Illness

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Living with an invisible illness is tough. Many of us have the understanding that if you feel sick you must also look sick. But, that is not the case for someone who lucky enough to have one of the various invisible diseases, like myself and Multiple Sclerosis. Things are not always as they seem.

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People have a set expectation. If you are sick, you should look sick. But, let me say this to you: never judge a book by its cover for things are not always as they seem. People find it extremely difficult to believe and understand what they cannot see. Many of them think things only exist when they can see it first-hand. How can one show you what cannot be seen? In my experience, this is the hardest thing for others to understand. All of this being said; there are of course people out there who take my word for it. Who believe that I am suffering from X, Y or Z. Though they may not understand it completely, they try.

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When we were younger the majority of us had an invisible friend. How did you feel when someone told you that they were not real? That was heart breaking; people would often try to convince you that there was nothing there. If they could not witness it with their own eyes then that meant it did not exist. They made you feel like a liar, even though you were fully convinced that your invisible best friend was real, just as real as the grass is green and the sky is blue. Well, that’s kind of how it feels for me, someone with an invisible illness. Living with an invisible illness is very difficult. You have to explain the same thing to different people all of the time.

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Let’s create a scenario for simplicity’s sake. If you came home with a black eye and a slit lip people can see it. It’s a pretty visible injury. They understand this situation because it looks sore, and because they can see and relate to that kind of situation. They believe you because they have witnessed it for themselves.

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People relate to this scenario because they can see your injuries. They understand (to a degree) what you are going through because your symptoms are on the outside, visible for the world to see. Their eyes are telling them that what has happened to you is real. You go to college or work and your classmates/colleagues feel sympathetic towards your bruised eye, they notice your slit lip in an instant.

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I’m sure you understand by now what I’m trying to say. The main issue I have with MS and the fact that it’s an invisible illness is that people don’t believe you, or some may think that you’re lying to get out of doing something or going somewhere. Anyone who knows me personally knows that I wouldn’t beat around the bush, if I have no interest in something I will make it clear to you!

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Another problem is looking “well” when you feel like the definition of misery. I guess in a way it’s a good thing to look “healthy” even when you feel like you’re dying, but, on the other hand it’s very hard for people to believe that you are unwell because they can only see you as looking healthy. Even though I could be numb all down my right side, people would almost “brush it off” because they can’t see it with their own eyes they just have to take my word for it.

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When people ask me; “how are you?” I automatically say that “I’m fine” or “I’m grand” because that is a hell of a lot easier than explaining how I really feel. Maybe if people asked “how do you honestly feel?” they know that I’d give them a long answer. “I feel like pure shit. I’m sleepy, I have no energy, I can’t concentrate, my left leg is numb, my right leg is burning, I’m having muscle spasms in my left arm and my right arm has non-stop pins and needles. On top of that I haven’t had a goodnight’s sleep in weeks, my whole body is shaking and I still have to try and go to college tomorrow.” This is just an exaggeration, but you get my drift! All in all, the shorter answer is easier and better for everyone, isn’t it?

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It’s tough when you have to take the day off of work because you can’t feel your right hand. It’s tough taking the day off of college because you’re so exhausted that you can’t stay awake or concentrate. It’s tough when you have to reject or cancel plans because you feel so sick and crappy. It’s tough when you worry about what others are thinking. At the end of the day, you have to live with it. You have to get on with life and not worry about what others think. That part is the toughest of all; convincing yourself that others who judge you do not matter. Their perception of you means absolutely nothing, and yet, you believe that because you feel sick on the inside you must look sick on the outside. Or at least, that’s how others make you feel.

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Living with an invisible illness is hard. Coping with an invisible illness is hard. I have to work harder than my illness. My attitude towards it can make all the difference. It’s important for me not to let the opinions of others get to me. When the going gets tough, the tough get going!
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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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