OMM: Update on the EDS Life

In the last three-four months, actually in the last year, things have gotten worse. But I would say I’ve managed to hit an all time low in the physical health department. I don’t even want to go into half the problems that I’ve been dealing with because they are pretty awful. But the worst part of it all is that not one doctor (I’ve seen three specialists and ended up in the ER three-times now) has helped me. My body is literally falling apart, the pain has gotten five times worse, the fatigue and dizziness, and nausea and isolation and depression has all taken a nosedive off the highest cliff, and not one doctor has been able to figure out what’s wrong. I survive in this body but truthfully, some days I really feel like I may be dying. It feels like something is seriously wrong and I’m being tossed around from doctor to doctor. All the while, the few tests they’ve ordered have come back fairly normal. Which is another EDS thing. Yay me.

The pain meds have pretty much all but stopped working. I’ve been switched from morphine and toralac to perks (which didn’t work well) to hydromorph and naproxen. I’ve developed an inability to keep my food down, I’m constantly nauseated and throw up at least once a day. Really, it’s no surprise that I’m not coping very well.

 

I was supposed to be going to university in the fall–that’s out the window now, as I’m basically chained to my bed. The isolation is crushing me. The pain is never-ending. The nausea is punctuated by short breaks, small moments of relief that occur after I’ve thrown up.

I’ve been inactive on basically all social media. I’ve been closing myself off from the world because I feel this hopelessness that is something I don’t want to admit to. I feel like I am going insane most of the time–because how can this–how can any of this be real?

Depression has been escalating–the edge of a razor blade is beginning to look appealing–again, but more than that my waking hours have begun to pale in comparison to the dreams and even oblivion.

My computer is breaking. Which means that writing has become more and more difficult. Typing, compared with handwriting, entails about a three (sometimes four) degree drop in pain levels on a good day. So writing, which makes up about everything I have to stay sane right now, has been a lot harder. Everything has become trapped inside of me. To a point where no matter how exhausted I am, if it isn’t my body keeping me up at night, it is my mind.

I feel like I have been dragged into a cavern, deep beneath tons of ocean water, everything is dark and cold and I’m drowning. All the while I can see everyone around me either treading the surface of the water or slowly rising to the surface. Most days I am numb. Other days, life doesn’t seem to be worth living. Even admitting this brings an overpowering feeling of shame and anger and hatred into my heart. All these feelings directed towards myself. I know for a fact loving yourself is important but these days it is really hard not to be angry and hate my body. My soul has become an endless sea of rage and sorrow that cannot be dulled, and sometimes it cannot be contained. Underneath all these feelings of anger and sorrow lives an unyielding monster that is trying with all its might to swallow me whole and drag me down further.

About four-five months ago I had the “brilliant” idea to create a specifically writing-centered site–one where my anonymity was stripped away, I paid for it–it was a waste of money, because I’ve barely been able to get on, much less have I had any energy to do anything. But besides that, with the way my life is right now I don’t want to have to constantly worry about how I want to be perceived–what I want my name attached too. I know a lot more about myself than I did a year ago–some cracks in my heart healed, or at least, I thought they had started to. But tonight, I sit against my wall, typing this, and feel utterly lost. Completely alone and altogether barely keeping my shattered together.

I have people in my life who love me and yet all I feel is this sorrow and grief rooted in my very soul, slowly freezing me from the inside out. There are these moments that depression becomes a numbing anger-fueled apathy and other times where every single moment of suffering and pain becomes an insurmountable wave that crashes down upon me–forcing me further down.

I often find myself wondering why happiness is so evasive.

It doesn’t help that I’ve had to go down on my antidepressants which I still haven’t been able to talk to my doctor about–which I know is not good, but apparently with this class of drug if you take it too long it can cause some serious side-effects. Some of which I only found out about in the last week. I was originally on 90 MG of Cymbalta, about a month ago I went down to 60, and now I’m on 30. I’ve been on this medication and subsequently taken off of it, before back when my life basically fell apart and I ended up spending the summer in a hospital and a wheelchair. And then after awhile I ended up back on it, then back in February after the suicidal thoughts got even worse, my doc upped my dosage–which maybe helped for a month (…?…). But now, my short-term memory is screwed beyond belief, I’ve been getting more and new nerve pain (which is ironic considering I was put on it to help with pain along with the clinical-depression). It had begun to feel like every time I tried to sleep I was being electrocuted. The same thing happened when I tried abilify (which is the worst mood drug I’ve ever been on).

So to say I’ve had a lot on my plate is a monumental understatement.

June 17-June 19: What’s Been Going On

Think about a time in your life when you felt utterly and completely alone. A time when the world turned its back on you. When the vast number of people on a street or in your house faded like an echo. Hope dried up–like a cracked riverbed in the desert. You felt the reality of isolation as acutely and as infinite as one soul laid bare in a raging, howling winter storm, standing, the only one in the world, frozen and dying on the middle of steel-frozen lake. No one cared–not one person is 7 billion. This was a time when you finally understood that ending your life wasn’t what you had thought it was–it was a siren’s song, an alternative to trying to continue to endure what had become unendurable. The people in your life (if you had any) were not there, your family was silent as the grave, and for the first time in your life you understood the full meaning of loneliness.

Now, imagine you’re not just alone on that frozen lake–you are not just an one entity in a selfish, cruel and unkind world. You are just as alone but you have the added bonus of being trapped in a malfunctioning machine that is backfiring and assaulting itself. This machine is falling apart and injuring you with every second that passes. You are you, but you’ve been reduced to a snarling animal inside a locked cage. Your mind is screaming at you to run–to get the hell away from this machine that is slowly and deliberately trying to destroy you.

Now, imagine that machine that’s trapped you is not mechanical, but biological.  It is your own body that has trapped you–your own body that assaults you, causes you debilitating pain. That is what it is like to have a faulty body made for a purely physical world. A body that attacks you–a body that is against you. All this because of faulty genetics. It is purgatory descended into hell. Being alone is something we all deal with but being alone, trapped in a body that can’t keep itself together, is a whole new type of hell. One few people will ever experience to the extent that I have.

I don’t know how it is possible for my body to produce and contain this abject pain and suffering. How it does it–how my body can handle that intense pain and excess stress I really don’t know, and that’s on a good day when the pain fluctuates between a normal-six or seven out of ten (ten being the worst pain you can imagine). The last three days for me I’ve been at a constant level eight pain. But yesterday the pain started spiking towards level nine. And today the pain has not dropped below a nine.

I’ve taken double of everything today and that hasn’t touched the pain. So to say I’ve had a bad day is a dramatic and insulting understatement. I think that having this pain is not something that I will ever get used to–I don’t think it is something anyone can get used because some days, on days like today, it is very easy to forget that life is actually worth living.

Just admitting that, breaks my heart.

But, I know two things for certain.

One, some part of my spinal column has shifted, creating a bulge on my spine–the pain caused by that is unimaginable to everyone unless you’ve been through something similar.

Two, I experienced a bowel prolapse about a month ago, since then normal human functions have slowed to a stop, and if I eat–I throw up, so these days I live on a diet composed of mostly liquid and toast, and I try to have at least half of a normal people meal.

When I say I am utterly alone, I mean I live in a world incomprehensible to most people.

Because of all these terrible health issues, I’ve pretty much living in a state of constant terror. As it seems, I may not only have EDS Hypermobility Type, I may have another type.

I am terrified because on the 20th I have a big appointment; one where I have a sinking suspicion that surgery is going to be brought up. I don’t know what’s going to happen next.

 

Waking Up

We could have been something.

Instead, we remain nothing.

You came into my life. You helped to heal a part of me I thought had long ago been eroded away. You took me by the hand and led me back into the light. But it is my choice whether I decide to stay there.

I will no longer wait for someone who lets fear rule their life. When you give fear an inch, it’s already won. You’ve already lost.

And, I’m not waiting anymore.

I’m done.

And there’s freedom in that; in finally being able to move on. We part ways today, in a specific way, but I still wish you well. I really do hope you find your way. And, I hope that one day you will find happiness. I won’t ask you for more than you can give. And I’m not going to blame anyone else for your mistakes. You’ve chosen another life. And I’m not holding onto a hopeless hope that one day you’ll wake up.

We’re done, not that we were ever really together. Whatever we were, we’re not. So live your life, and I’ll live mine.

We were never meant to be.

My life has become a very confusing episode of friends. I honestly do not know how that happened. And things have gotten weird so my friend is now sleeping on a cot in my room. And I feel like reality and the surreal have split, and I’ve fallen into this abject time and space that is a crazed psuedo-Alice-In-Wonderland echo. So I’m going to try and sleep and see where I wake up.

why oh why

is life so grim

what is my purpose

what is my calling

how can i create a better world

when will i see the light ?

when will i see the payoff

when will this pain go away

when will i get to change the world

and am i even trying ?

treading close to the shore

unable to move any further

LNT:01

There is far too much on my mind tonight. I’m wrestling with demons left and right. Memories have come crawling to the surface–talons outspread, wreaking havoc on my security and mind alike.

Inside, I have these secrets.

Things I desperately want to say–stories, I need to tell, but I can’t bring myself to do it, for the fear of a fallout, humiliation, fear, and shame. I know if I told my story, some wouldn’t believe me, others would condemn me, and all I really want is some peace, just for a little while. But deep inside of me, I feel like in order to finally accept what has happened, and move on, I need to tell my story. But I don’t want certain things getting back to certain people. But, I want to stop worrying about them. I don’t want to hide from what happened to me anymore. Overcoming what I had to, has changed me, and this pain that I’ve conquered is a part of me now. Lying about it any longer isn’t possible, it is just doing myself a disservice. It’s sacrificing my worth for people who don’t even care or deserve it. I keep these secrets because I want to protect myself and my family…even if it was only one of those secrets that would make them hate me. But why should I protect the people that are responsible? I shouldn’t.

I’m tired of constantly running, constantly trying to fit into some mould–to filter out my unpleasant realities and shocking revelations. I’m tired of running from this part of me. But maybe, instead of shouting it from the rooftops, I’ll work on learning to face it as it comes to me in my day to day life. I won’t lie about it any longer to anyone; I’ll face it, accept it, and start anew.

Reborn

In the numbing grey, a single seed

Shatters; it self-destructs.

An emerald stem –teeming with life– winds its way unknown

A single stem punctures soft soil; needing, reaching…

The Incandescent; life reborn