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I was diagnosed with multiple sclerosis in May of 2017. Yes it is still new, I know I have not had it as long as others have. That does not make my pain any less real. I feel pain consistently every single day. It is very unfortunate that I have to consider this “my new normal.”
Because of the opioid addictions, it is very hard, if not impossible, for me to receive any medicine that will at least give me some relief. Because of other poor choices, people (like me) are not able to get the help they need. They are accused of it being in their head, to just take Tylenol or ibuprofen. “You just need more rest”, “a muscle relaxer should help”, “take some Tylenol before bed.”
While I appreciate you recommending those things, they do not work for me. I have tried them, over and over again. Perhaps it will become clear, once my symptoms evolve and I am horribly sick again. Maybe then, you will say you will give me a “higher dose of ibuprofen.” Which, again, does not work for me. My body is hurting deep in my nerves, I need an instant release medicine, so I can live my day normally, and not in pain.
I do believe my favorite thing I hear, whenever I bring this topic up to people, is, “But you don’t look sick.” Ah, those five simple words, yet put together can sting. I’m aware I do not “look sick.” It is a nerve disease, that is silent, unpredictable, also quite painful.
If I could count the amount of times I have heard that sentence, I would probably lose track because my mind can't focus that long. I know they mean well, and they do not intend to hurt me. Yet somehow, it hits me right in the gut.
I know that you cannot see my symptoms, and to you I may look perfectly normal. Underneath my "normal" look, is a world of pain you could not understand.
You cannot see the fatigue, waking up tired, even being tired in my dreams. Having to drag myself out of bed, because staying there is letting it win. You cannot see the insomnia, that doesn't even make sense, because I was tired all day. You cannot see the fact that the hand you shook earlier was completely numb. The whole left side of my body is numb, but you cannot see that. My vision in my left eye, it's a surprise if I wake up able to see fully or not. You do not see the amount of medicine I have to take to keep me stable. You do not see me suddenly walking in another direction, because my body wouldn't work. You cannot see my brain not connecting to my mouth, and words not coming out correctly.
I know you are trying to help, in your own ways. Not prescribing me these medications, you want to keep me safe. You do not want me to turn out like the other kids in my generation. What you do not see is that I am not like them at all. I am in so much pain some days, I do not want to move. Staying in bed, seems like the only option for me. I hate that, because I used to love being on the go. Now though, I am stuck. I am in what I would call a “stationary point” in my life. Anything I do hurts me.
So please, help me get this out to doctors. It’s ugly, hard, painful, even evil to live with these diseases. Yet we are forced to suffer, due to other's wrong doings.