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.

image

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.

image

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”.

image

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.

image

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.

image

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.

image

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.

image

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..!

1313351766545

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.

f2ea1381a1a8383317daa5e61b37d34a900596077d25a1edbcfffd6d33d12d47

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.

dbF5t

sarcastic_wallpaper_1to2

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.

a9fc43bb369f11e9a4b6321dedfdae62dc73cd90193bf20aa77502891b64c98d

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!

I have no idea what I'm doing dog

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..!

bb13586a79805f8445c62f4809002c04b4c18e794e7e44b2a15f09b904a423a2

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!

739a02666a10199aca9e14055b5e6a3767987e64b77eb6e9b3cde1c9052102b8

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!

meme-impossibru

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!

true-story-neil-patrick-harris

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!

d0nuxz