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.

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