I am not in a good place.
I feel utterly exhausted fighting with fatigue. Sometimes I wonder what the difference is between depression and MS symptoms: feeling tired and exhausted by everything. Wanting to cry, feeling alone and misunderstood and just incredibly sad. Not ready to take on the world. When my symptoms flare up I start to be disconnected from who I am. I don’t recognize my body any more and I don’t know how to translate what it’s trying to tell me. Sometimes it feels like I am living the life of someone else, with a faint memory of my own, old one. The life that used to be “normal“. Yet, normal has changed over the past few years after the diagnosis. Normal is constant adjustment. Normal is something else every day. Normal is, having to plan everything, every minute. Normal is having too much things to do but not enough time because, when I come home I collapse on the bed and just want to sleep. Most of the time I already fall asleep in the car home. Then I wake up at home, feeling like I’ve been hit by a car. It’s normal. I want to shut everything out and just try to relax, get rid of the exhaustion.
But my body doesn’t let me. My thoughts start to whirl in my brain until I start screaming inside, silent, telling it to shut the fuck up. Do I have another episode? Is it just a flare-up? Is it the stress? I don’t really have much stress do I? Other people have more stress. They work much more. Is it all in my head? What if everyone thinks I am pretending? Am I pretending? Am I just weak? Whirl, whirl, firestorm in my brain. SHUT UP BRAIN!
My hands tingle, I hardly ever notice that I keep stretching my hands. My arms constantly feel like they are tightly bandaged, sometimes my chest too. It’s kinda like being in a cocoon which is a nice metaphor for how I sometimes feel. Sometimes I just would love to scream “You don’t know how I feel” but then I remember, I don’t know how I feel either. There is constant doubt. Is this a new symptom? Did I feel like this before? Am I just over-exaggerating? Do people think I am over-exaggerating. It’s normal. SHUT UP BRAIN!
Ants running up and down my hands, constantly. I hate ants..I have an ant phobia and my body makes me feel like I have tons of those little things running up and down my hands and arms. Every day, all day. It’s normal. There are many more things that are normal now.
I feel the most like my old self when I am streaming, when I play games, when I am around people but more and more I just want to be alone. I am a social person, I love meeting people and I love chatting with people but my body doesn’t want me to. It wants me to be too fatigued to do anything. Then I just want to do things, without having to talk to anyone. Being with people without having to socialize. Doesn’t that make me a horrible person? It is not who I am but it’s normal.
My neurologist explained fatigue in a way that I will never forget: imagine every conscious or unconscious daily function (breathing, seeing, eating, everything you do during a day) like going to a destination. It’s a straight point from A to B and you are used to go there and arrive super fast and on time. Now in Multiple Sclerosis, there is no straight way, you might have to go over a hill, there might have been a landslide and you need to find a new way to get to your destination. That way is much more exhausting, you need to climb over rubble, jump over streams, avoid tons of obstacles on the way, until you finally arrive at your destination, exhausted and tired, knowing there are countless more journeys like that ahead. Each little action needs such a journey to a destination. Muscle impulses don’t work straight forward, they fire in any direction. They need to find other neural ways to carry out the action my brain just triggered. But it’s normal.
Brain fog, I hate that word but that is what it’s called officially. It feels like I am trying to fight cotton in my brain to think, to react, to make sense of things. It’s not just spider webs. It’s thick, heavy cotton. The kind that completely plugs pipes and drains. It sometimes feels as if it’s pressing down on my eyes. Not like tiredness, just like…weight. It feels like that cotton is trying to spill out of my brain and cover my eyes. It’s covering my thoughts, my thinking. I feel those ants again..I just stretched my fingers without actively thinking it. It has become a thing, a routine. Again. I just realize this because I am writing about it as it happens. Sometimes I imagine myself to try to crawl out of that cotton, literally. I see a little mini version of me trying to clear out all that cotton. I then try to open my eyes really wide, move my forehead but it never helps. It’s normal.
The first thing you have to do after you get a MS diagnosis is to make sense of your body again. It’s foreign and strange. It doesn’t respond like it should any more and there are all those constant, weird little pains and things going on that feel like a foreign language. Hard to translate. It’s like trying to learn a language that constantly changes. Like writing, my brain wants to write down a specific sentence but my hands do something else. I sometimes end up writing garbled stuff and I look at it and go: “What, I didn’t write this, didn’t it?” It’s frightening. It’s normal.
I keep forgetting where I put things all.the.time. I am not just clumsy. I TRY to put the keys in the same place or my phone in the same area in my bag but I do stuff without even remembering. Living someone else’s life. Looking in, from the outside. Who put the phone on the microwave (I actually wrote microphone, and just realized this while reading through the sentence again)? I sure didn’t? It’s normal.
I don’t want to look exhausted. I don’t want to look tired but not looking sick and “normal” is exhausting on itself. I don’t want people to ask if I am sick or if I didn’t sleep well. I want to talk about it on my own terms. That is the reason I try so hard to be cheerful and don’t look tired but it’s getting harder and harder and more and more exhausting. It’s like keeping an illusion up but that illusion is who I used to be. It’s not a fake version of me but it’s not the “normal” version of me.
Then, all of a sudden I realize that I think about ME all the time. ME, ME, ME and it makes me feel like a horrible person again. What’s normal for me is not normal for everyone around me. If I don’t know my own body, how can THEY understand me?
I am tired of “normal“. I want to feel like me again.