Wednesday, September 28, 2016

Collection of thoughts on pain

No one will ever love you the way you used to love yourself. 
How do you become okay with being someone else? How do you convince someone that living like this is unacceptable to you, especially when that someone is a doctor who has told you to stop looking for an answer. 
This can't be forever. 
I don't want this future if it is. 
Will anyone blame me for that? 
They don't see the emptiness this has created. That nothing can fill that emptiness except being able to do things I enjoy again.
I told her I didn't see the point of trying if I couldn't do what I wanted to do ever again.
She walked out of the room. 

I can accept that I may have some level of pain forever, no matter the underlying cause. But as long as I can participate in my own life and tell my story the way I want it to be told, I can live with it. But walking around like a zombie--being able to look but never join in--is something that I can't handle. That's why I avoid people. They're all living in a world I can't be a part of anymore, and that is too painful for me to handle. 
I know myself, and I know exactly how this evaluation with the pain psychologist is going to go--because that was more important than trying any treatment to actual relieve the immediate pain that has reverted me from doing pretty much anything for weeks now. Not even a strong NSAID. Six months without medicine, other than Advil. Anyway,  going to be told something along the lines that I need to practice radical acceptance, that I need to accept that doctors cannot help me and that I am responsible for dealing with this (at which point I will remind them of all that I DO Do to prevent things from escalating), etc. Maybe I will also then mention that you can accept your situation while still actively working toward finding an answer. That no one has actually taken an MRI of the area that hurts--in which an anatomical deformity has recently been identified on an x-Ray. That they are focusing on the disc herniation that completely healed, which was associated with completely different pain and a better-than-full recovery. That the pain I have now developed quite gradually and continues to worsen over time, which is quite uncharacteristic of "chronic pain" with no identifiable cause. That based on the most recent movement tests conducted last week, the pain is probably not originating from the area of the disc herniation at All. 
I could go on. I could cite study after study. It gets tiring when no one seems to listen. "So, it's a sharp, shooting pain, you said?" "No, I said it wasn't like that at all, more than once." 
Stop projecting your generic image of a patient with chronic pain onto me for fuck's sake. Your generic PT probabbly won't be helpful either, as I guarantee that even as fucked up as I am, I have pushed through and can do more than most healthy people ever will in their lives. I know what you see when you read my charts and look at me--though you never even bothered to get the medical records from West Virginia. 
I feel that this approach is going to turn me into the very thing they already think I am. And I wonder for how many people such severe, lifelong pain issues could have been prevented. 
This heaviness is becoming too much to handle. I don't feel like myself anymore. And I know myself well enough to know that I can't just replace or forget about the things that allow me to feel like me. 
When I truly did accept that this was forever--when I stopped trying to find an answer--i spent a lot of time researching assisted suicide organizations in other countries. Because without the things that make me me--which also enable me to function socially, mentally, and otherwise--I'm already dead. I've tried to replace these things. I worked fucking hard to do it. I'm not interested in becoming someone else or in being so non-functional that I need to be heavily medicated like before. 
So I guess I'm trudging forward for the time being. But there is always that part of my mind that wonders how much more I can take. If this all goes the wrong way, how do you tell your own mother that you don't want this life anymore? That the gift she gave you has become a curse? That you are no longer yourself and can never be again? Do you think she would blame you? 

I'm not okay. And today has made things so much worse. 

Monday, September 26, 2016

Mental Health Rant

I want to write about mental health, but now may not be the right time. After a seven-day stay in the hospital that most assuredly requires many angry letters to administrators of all sorts, I'm not feeling confident in the ability of this system to help me, though I may feel more confident in my own abilities. That tends to fluctuate, however. I hesitate to say more about this experience because I'm working on developing a letter that outlines how poor the state of UPMC's mental health care truly is, beginning with a scene I witnessed while waiting in the Emergency Department, in which a male doctor used admission as a threat--rather than a treatment option--for a female patient that did not want to submit to the strip search. (As soon as this doctor left, the patient cooperated completely.)

I will just say this. Treatment should not be a punishment. If you are using the treatment you provide in order to coerce someone into a certain behavior, what does that say about the treatment itself? Furthermore, using a patient's past history of mental health issues against them in order to justify an involuntary admission goes beyond just "unethical". Just because someone is angry and not cooperating with you does not mean that they are mentally unstable, and if you have not learned to adjust your approach to each patient, you should not be working in this field. Maybe I should have known even then. I have a number of other examples and thoughts, but I have a stressful few days ahead of me, and I may have to place these issues on the back burner until I can draft something more appropriate.

I think the most concerning aspect is that I consider myself to be relatively well equipped to handle my own issues (though this hasn't always been the case), but what happens to all those who are in need of intensive treatment and cannot advocate for themselves? My level of anger surrounding this issue has only increased over the past few years of receiving not just substandard but downright deplorable care. And being silent is no longer an option because, if this is what they call treatment, they should no longer be allowed to treat a single fucking patient. And I am going to make sure the right people know this, along with exactly what transpired over this last week.

My mind does keep turning over these thoughts, as the whole experience has been deeply unsettling, given that I'm not feeling much better than when I first arrived there. (To be clear, I'm not suicidal.) In some ways, I may feel worse. I'm trying to be more optimistic about the outpatient treatment, though that's proving difficult. I wish I could feel like I am not doing this all on my own. I wish I could work with someone who understands that not all aspects of DBT are helpful for someone like me--and that there's research to support that. IPSRT has been more helpful than anything, and I know this. My own research into helping myself has largely focused on that. I suppose it's not surprising that sticking to a set schedule and controlling your environment helps. I wanted to write something angry here about the conflicting diagnoses being tossed around by those working with me, if you want to call it that, and how the treatment can differ a great deal depending on which is accurate. But that should probably wait as well.

Aside from these negative experiences, it's difficult being back home--as it always tends to be--because I'm not sure what to do now or how to pick up where I left off. I'm supposed to have some kind of plan, but other than writing the answers they want to hear on a paper alone in my room, not much planning has taken place. That's the part that makes me feel defeated. How do I make sure this doesn't happen again? Gee, I'm so surprised that starting at a wall and coloring for 8 hours a day hasn't helped me figure this out.

But I have someone who is not only willing to support me in sticking to a routine, but who is actually willing to do IPSRT things with me. And that may be exactly what I need. The next few days will be rough, but I've decided to take the time for myself to ease back into the most difficult aspects of my life. I'm scared. I'm actually terrified of a lot of things, as most of you know. But this can't keep happening. I've been stuck in the same place for two years, for a variety of reasons, and I can't take it anymore. Something needs to change. And I need to be better about realizing when something isn't working.

Here's to trying again. And again.