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Get Up Anyway

I feel like I’ve gone over this time and time again, vomiting positive bullshit out of my mouth. Trying to convince myself the pain is not that bad, the situation will get better and tomorrow is a new day. You know, all the positive things I hear other people say, I’ve been trying to trick my mind into believing them.

The problem is, this is now the third week I’ve been feeling like this. I don’t even really know what’s wrong, I just know everything hurts and I’m super tired. So then I have to wonder, am I depressed?

I mean I honestly have no idea, maybe I am and I just don’t know? I guess it’s possible. The only thing I do know for sure is how guilty I feel over the condition of my physical state.

I keep thinking it’s my fault. I mean, it is just so hard for me to understand how my life ended up here. For so many years, I felt a little sense of pride working as hard as I could, through illness, pain and fatigue. Now I can’t even get out of my bed before noon because of my symptoms. Everything takes me so much longer now and there isn’t really a good way to explain that to people. How do you explain to someone that you look exactly the same, but you can’t do half of what you used to? Doesn’t make sense to a lot of people, shit it doesn’t make sense to me either.

But it is what it is. At the end of the day, this is still my life and I’m the one has to learn to manage it.

So even though every square inch of my body aches and I know if I close my eyes I’d fall back to sleep, I’m going to get up out of this bed and go to the gym. The Heart Failure Doctor told me to build up leg muscles so that is what I’m going to try and do.

In the end, losing weight and building up leg muscles may not make me feel any better. In fact, it could actually make things worse since it’s believed exercising is linked to the progression of ARVD. However, I just have to get up and do it anyways since it appears to be my last option in this fight against my body.

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No Right or Wrong

My entire body aches and I yearn for rest.

I really thought I was improving things a couple of weeks ago, but now I wonder if I just over did it and I’m still just paying for trying to be normal.

There is no right or wrong, there is only trial and error when dealing with chronic illness.

People have opinions, no matter what treatment you try someone always thinks their solution is the right one. People even convince you to believe in their solutions and it’s only after a disaster you realize you shouldn’t trust anyone, even if you call them doctor.

Even though I spent 30 minutes talking myself into moving from the bed to the couch earlier, I’m not upset today. Days like this use to begin in an array of unmanaged emotions. I’d normally begin crying because I wouldn’t understand why everything hurt. Then I’d continue crying because I felt guilty for crying in the first place, as if I should be stronger than the pain. However, not today.

Today, I acknowledged the body aches and fatigue are still here but no tears. I am learning it is just a part of me and it’s my job to adapt to this life. I don’t want to spend the rest of my life fighting my condition, I want to learn to live with it in harmony. Isn’t that what everyone wants, to feel happy? I mean, I get glimpses of happiness but if I’m being honest, it all still seems so untouchable.

What’s that saying, if you reach too high you might get burned down by the sun? Something like that is what I’m afraid of.

Two weeks ago I had convinced myself I was on a better path, I was progressing. Today I realize I’m still lost in a forest, hurt and moving slow, but still determined to find my way out.

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Abnormal Heart

“So am I or am I not in heart failure?”

Paraphrasing my doctor:

‘Well you see there still isn’t a definitive answer. We know your heart is definitely abnormal but that’s all we know for sure.’

“Okay…”

Today I wrapped up my doctors appointment feeling relieved. I have to choose to be relieved because it’s the only option to mentally survive the mind fuck that is my life.

The doctor told me to start weight training my legs, just like the guy a few weeks ago, and to lose weight. Then in 6 months, I will do ANOTHER CPX test to see if I’m worse, the same or better.

So here is to hoping that I can become my best self. ❤️

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New Normal

It was really hard getting out of the house today after feeling so bad the past few days. But this morning after my mom called and woke me up at 11:30am, being the 6th time I was awaken since going to sleep that night, I realized I had to get up.

Yesterday I made a promise to myself, a prayer, a beg from the universe, whatever you want to call it. In the peak of what I’ve determined as the WORST pain I’ve felt in a long time, I was desperate and said to myself: “Everyday, no matter how bad you feel, what may hurt or how out of breath you get, everyday that isn’t like this, you will get your ass out of this house and start enjoying life again!”

Yesterday was a wake up call for me because I realized this general feeling that I refer to as “tired” isn’t going away and I will always feel moderately shitty for the rest of my life. I mean, I have several chronic illnesses that have heavily impacted my life and they have totaled my body. I’m running on faulty and missing parts, just doing my best to put myself back together again. I will never be what I once was, but I can look just as good once I’m refurbished.

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Depressed Maybe?

I think I’m depressed, I really don’t know. I woke up this morning feeling extremely sad, which is dumb because there’s no reason to be sad. I hate that days like this happen, it’s quite pathetic.

I don’t understand why I can’t just be normal, or at the very least, not chronically ill and depressed. That’s just not the life I was given, so what am I to do? I’m currently still laying in bed at one in the afternoon, and even though I have an Upper Respiratory Infection that’s not the reason I’m still in bed.

The sadness consumes me, as if someone has died and maybe someone has, maybe me?

Days like this are the worst, the loneliness consumes me and I fight so hard to keep the tears in, but they always come out. Then I feel guilty for crying, because really, why am I? Nothing bad has happened, NOTHING, I just woke up with sadness inside me. I get so mad that I feel this way, I just wish I could make it stop but I can’t. Oh how I’ve tried for years to control my mind, but have yet to master it.

I am trapped in the prison of my own body, never able to escape this constant hell. Always expected to live up to societal norms yet restricted from doing the things I desire most. Day in and day out, I try so hard to find the best, telling myself this is good enough but the truth is, it doesn’t feel good enough. I don’t know how to make my life better, I don’t know what else I’m supposed to be doing. However, I know this too shall pass.

Feelings are only temporary, including the bad ones. So I’ll peel myself up in another hour, take a shower and fake a smile until it feels real again.

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Ramblings

On Tuesday, the doctor diagnosed me with an upper respiratory infection. Which, really isn’t that bad compared to something like the flu or pneumonia. Yet, I still feel completely beat down as if I had something more severe. Which has led me to a couple of thoughts.

One, if I feel this bad with something as mild as an upper respiratory infection, I imagine anything worse would make me bed bound.

Two, I think it’s super annoying something as mild as an upper respiratory infection has me feeling this bad. An upper respiratory infection was something I used to work through, no big deal. Then again, I also used to be able to work on days I wasn’t sick, that also isn’t my life anymore.

I know my life is different now, I know it is but I can’t accept it. I have to continue to fight for a better tomorrow and God it is hard. It would be so much easier to let my body win and stop trying to get better but I can’t.

So I continue researching my mystery symptoms, I continue going to doctors appointments even when they seem pointless and I continue looking for new courses of treatment. I may never get better, I may live the rest of my life in this limbo hell, but at least at the end of my life, I’ll know I did everything I could to make it a good one. Because this is it, all we have. Each day that passes, is just one step closer to death and I’m tired of feeling like my days are wasted. I don’t know how I’ll change my life course, but I’m determined to try.

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