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I question everything. I question it all. I could spiral almost into an existential crisis and I’d still wonder the same things that I’ve pushed from my mind so many times for all the years I’ve been alive. I think about memories of my past and feel so much of it all over again by simple thought. What part of us stops being barbaric, a neanderthal mammal and leads us to be the empathetic, compassionate human beings some of us are?

I heard something today that said, “we can change our dreams at any time and begin new ones when others have ended or have been completed.” And I’m not sure when I started believing that once dreams are done, the major dreams and events I needed to accomplish in life were completed and my job was over- my life had no more meaning. I’m also not certain why it took me 40 some years to realize things are never ever what they seem; how physics may determine facts but besides physics there are electrical impulses that can bend and twist what we know as reality and fact. There is so much more to us than meat, flesh and bone. I think about how we’re literally tiny atoms floating incredibly close together to make our physical presence yet we are pure energy. We’re so electric that we don’t even think about that fact. We just accept it.

I’ve had such a long time to make the right choices in life but it’s nearly impossible to never make a wrong one, because we’re not flawless beings. Is it due to evolution and keeping the human race going by not being perfect? Or is it because we are portions of the being/s we are created by- something so much bigger and greater than us? So much larger that we’d never be able to comprehend even the idea of said things.

For now I will obsess over the sky, especially the stars and many constellations. I’ll marvel at all of this including galaxies we can’t visit but those which are so much brighter. A final dream of mine would be to travel to the event horizon and cross it but my brain also desires an even bigger, bolder, destination or two and yet there are such tiny small realistic requests.

I’ve learned things from every failed relationship and failed friendship in my life but I don’t deserve full credit because sometimes it takes someone who knows you better than you know yourself to open your eyes. And to move forward. Because life is hard. Living is hard. And I’ll forever question everything. Including questioning others motives and decisions. One day I’ll receive the answers or I’ll die not knowing any answers. If there is nothing after death I’ll never know and maybe that would mean the answers are pointless as are the questions. Or the alternative being that after death we become truly free and are filled with the entire universe’s secrets revealed.

I could drown in knowledge and my death would stay meaningless to others but I’m hoping the secret is; that it’s not. I’m hoping that there really is an entirely separate world or realm where I’m filled with knowledge, there’s no more pain or sadness there, and I finally learn to play guitar. We need the secret to be that there’s more.

Recycling Hopelessness

The new year is right around the corner and I’ve no hope today. I can’t think clearly or feel comfortable in any way. More than anything I just want to be rescued. I want that little girl’s dream of being cuddled and taken care of as a woman to come true. I want someone to stand in front of me when a stranger is trying to hurt me. I want so much inside that I have spent my life trying to find all of it and getting hurt in the process. Why does loneliness exist? Why can’t I be comfortable with just myself? Why does everything feel like knives stabbing into me? Why does sleep and my mind torture me? Questions with no answers.

I’m tired, God knows that above all. My pain joins hands as if they’re teaming up to destroy me. I’m sure they realize they’re breaking me down. My brain’s switch is on self-sabotage. A never ending spiral of self-destruction. My mind is twisted and not a single rational thought is allowed to enter at the moment.

Is this all foreshadowing? Is this really how my life is going to be or will I die before 40? I’ve two years to learn; yes, learn. I don’t want to feel alone anymore. I don’t want to feel my pain while I dream in sleep. For the first time I touched my face and felt tears but didn’t realize I was crying. My body knows it’s hurting, my brain knows it’s hurting and I want nothing more than to be able to stop thinking, feeling and dreaming. Only one viable solution when these things happen; yet one question- what do I do? There’s no getting away from the pain, memories and thoughts.

I’m tired. I’m hurting. Please stop doing this to me. Someone please save me.
Katie  -*Komodolover*

Rx: Life -Take with Medicine

So, there is no cure for Ankylosing Spondylitis, nor depression, anxiety, bipolar disorder, fibromyalgia or Multiple Sclerosis. None for almost any autoimmune diseases I can think of. I’ve been told it’s something rampant in my family and that I must deal with it. That it explains every issue I face. I carry one of the genes associated with MS. Unfortunately, I did pass that to my daughter who now has MS. We are very lucky in that so far hers is more RIS (Radiologically Isolated Syndrome).

She is being treated with injections administered 3x per week. I think as of this point in my life, I’m dealing with a new denial. Denial that I am dealing with worse symptoms and that my mind doesn’t function as magnificently as it used to. I know it doesn’t, but I keep trying to push past my limits. That’s not always a bad thing until I get stressed and it makes everything worse inside my body. I live in worsening guilt every day as a mother in that every choice I’ve made was wrong and damaging somehow.

In my mind I am sitting in a chair in an empty room and staring into the dark corner. I have nothing I can face; not even myself with a mirror. In fact, the hardest thing I could do right now IS look into a mirror. I only deal with the random thoughts that pass by in record time. Flashing before my eyes in a speed that no one else would figure out what each image means. It’s impossible to remember some things, yet hard to forget a lot.

I began to accept myself, who I’ve become, and the choices I’ve made in my life around my early 30’s but I am now in my late 30’s and I find myself even more confused than before. I was given a beautiful moment of clarity and now it’s being ripped out from under my feet. Accepting I have an illness is one thing, but accepting that I’m progressing in that illness is just as difficult. Chronic pain is always there but the flares just worsen; it’s an inevitability that I’m finding difficult to come to terms with.

I knew from the beginning that there was no cure for any of the situations I am dealing with, but in my mind there was always hope. I think that’s a natural part of being human. It’s the same as a will to live buried inside instinctively. I don’t think that is lost even when taking a last breath from suicide. I really think it’s pure instinct for humans. An example might be when you have eaten something bad- your body retches and vomits to save you in what way it can because your anatomy knows “this is bad! I must get rid of this to survive!” Please don’t misunderstand, I do understand the feeling of wanting to die. I have been there and I have almost succeeded. No matter how hopeless I was, my body was still fighting. No matter how much I wanted to close my eyes and never wake up, panic set in. I still think I should die but today I’m too lost to even go anywhere with that.

My episodes of depression seem to be lengthening to where probably 10 months out of a year I can’t even feel content. It’s also not so up and down and scattered. It’s a longer duration of mental anguish, regret, fear, loss, despondency and unrelenting painful sadness. ECT (Electroconvulsive Therapy) did get me through some rough months but my short term memory was and is still awful from it. I still repeat things to loved ones that I’ve told them on multiple other occasions. They get angry at me and say “you’ve already told me.” I haven’t had ECT since 2013 or 2014, and I honestly don’t remember the last ones. If I combine my already bad memory with episodes of consistent Fibro fog, I can get lost to the point that I am full of confusion.

As for worsening pain and mental illness– or maybe it can be called a “change” in my illness– I discover more about myself and the way my body is responding. For reasons unknown and incidentally, a nodule was found on my thyroid gland. I’ve been told incidental findings are usually how a patient and their doctor learn of an existing nodule. A follow-up ultrasound has shown, since that one was found in 2015, that I now have several. I do have autoimmune thyroiditis and these nodules are smaller than recognized needing biopsy. So I pay attention to any possible hyper- or hypo-thyroid symptoms and try to ignore the fact they’re there. It’s not hard to ignore, really, especially with my memory, but this is where I get into trouble. My doctors and I count on my memory to aid in new treatments and to refer to past treatments for my health issues. So many times I’ve recalled something and it was off by a few years or several months. Even recalling numbers of weeks is difficult. Remembering any reasons for stopping or starting a treatment are long gone.

I feel like there is no time, at least in a measured sense, with days and months. Every day is an extension of the previous with a nap in between. For me, the day is one long existence. I can’t remember or realize what day it is until I check that morning. I want so badly to live in a numb, physical and mental realm. That reminds me about a time probably over a year ago that I had a huge breakdown into tears. I couldn’t stop no matter how much I tried, yet it felt wonderful to get it out. As I’ve mentioned before, I’m not one to cry. If I am crying then it must be bad. It may not be bad for another person, but for me, whatever it is I’m upset about, it’s awful and intolerable.

Sure, it felt good then, but spending that way day after day with or without tears is a lonely life. No one wants to be around me after awhile. Everyone I love gets tired of me saying that I’m hurting, that I’m sad, I’m in pain and I’m tired. Tired meaning I’m done with everything. I don’t think I’ve ever used the word “tired” as in “just worn out and need sleep,” in my adult life. For me it’s always meant “this is my breaking point; if I died, it would be a blessing.”

I can’t deal with anything anymore, including my own thoughts. For my physical tiredness I use the words “exhaustion” or “fatigued.” To me, these definitions are better suited for my own body. Problem is, saying “I’m tired” has become the standard “how are you?” circumstance. No one pays attention to what I really mean nor want the real answer to “how are you?” It’s become a repeated robotic answer to say “I’m fine.” Can you actually remember every time you’ve been asked that question? I can’t, and the times I was really struggling? I would have given anything to be able to be truthful and have the other person not leave me until I was okay. People asking and not wanting to stick around for the real answer are why I (and everyone) began repeating the lie saying “I’m okay” or “good.”

So to everyone: I’m okay, I’m fine, and I’m good. That’s what you want to hear, isn’t it?
Sincerely,
KatieB