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.
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.
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”.
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.
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.
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.
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.