6 years on and I’m still learning.

I was inspired to write this entry after I took a turn in the gym. One of the reoccurring themes of my MS journey is heat sensitivity or heat intolerance, also known as Uhthoff’s phenomenon. I want to share my experiences with heat and exercise.

So, what, we all get hot? True. But do you experience any of the following? Blurred vision, double vision, fatigue, heavy limbs, feeling faint, dizziness/vertigo, hot flushes, cold flushes, incontinence, numbness, mood changes or a burning sensation? I’ve no doubt that you’ve experienced at least two of the following symptoms. Let me explain how Multiple Sclerosis never lets me forget about it.

I woke up and struggled to get out of bed. I knew I was more fatigued on this day than I was the previous, but I felt that I needed to suck it up and just go to the gym. I’m never overly enthusiastic about going to the gym, I was more conscious of my lack of interest on this day because it was very warm. I was anticipating a mini flare up or two. Class began and I kept telling myself to keep pushing and keep going. I didn’t want to make a show of myself in front of everyone. I worked as hard as I could, which in hindsight probably didn’t look like much from an outsider’s point of view!

20 minutes into the workout I remember thinking that the heat was relentless. I felt as though I was boiling from the inside and that my body was melting.

(Side note: Roughly 6 years ago the right side of my body went numb and I had pins and needles. The symptoms that accompany flare ups generally dissipate after around 6 weeks. But, sometimes those symptoms may linger. I have yet to regain complete feeling on the lower right-hand side of my face (the cheek to jaw area) and a patch on my right forearm also has diminished sensitivity.)

I noticed that the numbness on my face had begun to tingle and spread upwards from my cheekbone and stopped just beyond my temple. My whole body just started to slow down. My legs began to feel weak; I was telling them to move, but it was like they had been filled with cement. Lifting them was becoming gradually harder. I thought the session would never end. I’ve grown accustomed to mini flare ups during training; blurred vision and the spreading of numbness usually, but this workout took a lot out of me.

Once I got home the fan was switched on. I must take lukewarm to cool showers. If I take a hot one, I end up with tremors, blurred vision, dizziness and numbness spreads around my body for a few hours after. Far from ideal. Towards the latter half of the day I began to feel a bit better.

The following morning, I had another gym appointment. It was much cooler today than it was yesterday. We began the circuit style session. The first round wasn’t too bad, I pushed myself and was doing alright. Then, out of nowhere during the first stage of the second round I felt a warm flush run through my body from head to toe. Out of the blue I was roasted. Just like that, my mood changed. I felt angry. I started to feel very weak. I remember thinking that the weights should not feel this heavy. I physically could not raise my hands above my head no matter how hard I tried. I was telling myself that I can do it, don’t make a nuisance of yourself. Then my vision blurred.

Rising from the bench to move onto the next piece of equipment I got a sudden case of the spinners. I could liken it to coming off a merry-go-round as a child. I walked to the toilet while holding onto various pieces of equipment to make sure I didn’t fall. I wanted to cry. I felt defeated. I go to the gym to try and better myself and yet my body stops me from doing so? That’s irrefutably unfair. I splashed cold water on my face and wrists in a futile attempt to cool down. By now I was seeing double. I was beyond frustrated. I waddled back to the gym floor and was adamant to try again. And I did. But not for long. I was ready to collapse. And so, I had to be driven home. I slowly trudged up the stairs, stood under the water in the shower, cried and went to bed.

The most exasperating part of this illness is its invisibility. How can one experience so much torture inside one’s own body and no one can see it? It’s tougher to deal with MS when no one can see your suffering and understandably cannot comprehend what I experience. And people think I’m mad for disliking summer! Upon reflection, I didn’t do myself any favours. I knew my body was telling me to stop, and I suffered the consequences as a result. I’m still learning to take these symptoms seriously and to know when I need to just stop. I’ll get there! Chin up and keep going.

I can go the distance.

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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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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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