Sunday, December 13, 2009

In Hospital for ECT

I have been in the hospital since Monday and am receiving Electroconvulsive Therapy (ECT) treatments again. I had my first treatment on Friday. Everything went okay. I was a bit scared as I climbed onto the surgery rooms treatment table/bed. I have been through this before so I was no where near as scared as I was the first time I had ECT.

That said, I started to cry as I went under, because I was a bit scared, and I really feel like my life is not worth all this effort. Some of my tears were of shame, for being like I am.

When I woke from the anaesthetic I was very confused and had no idea where I was, or why...and all the people staring down at me on the table really freaked me out. As soon as the nurse explained where I was I remembered and calmed down...(I almost felt, for a brief moment, like I had been abducted).

It surprises me, but as soon as I got into the hospital I felt better on a scale of 1-10 than I have in a long time....maybe years. This confuses me and makes me wonder if I am just weak, and need to be taken care of (it is really hard for me to even think that... I want so badly to be able to care for myself). I am still really depressed, but not near as depressed as I have been in the past few months.

I believe some of the lift is because, while I am in the hospital, I have no real responsibilities. I was really stressed out about all the things I was supposed to be doing: teaching art classes, helping teach a class, walk my dog 3-4 times a day, feed my dog, do all I need to do around my house like cook, shop, clean etc., etc.

My sister phoned me back and said she would take my dog for me. Thank god. My other sister came over to my city and took me to the hospital, and stayed with me for the 9.5 hours it took me to get admitted.

Yes, you read that right. I sat in emergency from 8:30am until 6:00pm. It was so stressful. I must have repeated my exact same story to 5 or 6 different people, nurses, nurse liaisons, residents, dr's, psychiatrists. I do not understand how this can be more efficient than having my own psychiatrist say I need an inpatient stay and calling me when a bed is available.

Anyways, I have ECT treatments Mon, Wed, and Friday next week. I have my laptop with me, but cannot figure out how to get access to the wifi here. I will write when I can, but I just want to tell you I am in a safe place, getting the treatment I need.

Wednesday, December 02, 2009

It Gets Worse...

It seems I am being blocked at every angle. After seeing Dr. X. yesterday I called my sister to see if I could drive 5 hours to her place and leave my dog with her while I went into the hospital.

She owns her own home on 2.5 acres of fenced in property. She has two dogs that my dog adores. When we go there it isn't anymore work to take care of one extra dog, because really all she needs to do is put out an extra bowl of food and water (which I, of course, would bring with me, so there is no extra cost). I have dog-sat all three of them for a few days at her place before and found it no more difficult than taking care of my one dog.

At first my sister said sure, bring him up. So I made arrangements with a friend to take the 10hr return trip with me. A couple hours after my sister said okay, she phoned me back and said, "Can you find somewhere else to keep your dog?" I told her I had no where else to go. She said she couldn't take the dog, and I could hear her husband yelling at her in the background.

I got off the phone and started crying. I felt completely abandoned at a time when I really need my family to help me. It was really hard for me to reach out and ask for help. I know the dog is my responsibility. I know when I got the dog I made a decision to care for him. I also know I am an adult and need to take care of myself...

I know all this, I am generally, despite being so depressed, very, very independent. I always have been. I rarely ask my family for help. I feel so intensely alone.

It seems like my family thinks I could choose to be different if I just tried harder. Honestly, sometimes I feel like I am being treated like a drug addict, or a family member who is a criminal, rather than a family member with an illness. It feels like my family has decided that tough love , cutting their ties and there losses, and allowing me to hit rock bottom is the only way to saveme from myself. It is as though they feel that if they just push me far enough away my problem will disappear.

My other sister phoned me last night and I was really honest with her about how I was feeling. I told her that sometimes I feel like no one in the family cares about me, like the only way my family would recognize I need help would be when it was too late to help me.

She said, "that is just the depression talking, and they love me, but they have their own families".

I replied," I understand that, and I know your families take a lot of love, attention and time. I try not to ask for help, because I know you are all busy with your own lives, but for me, you are my family. I have no family of my own to help me. I have tried to find help in the community, but I cannot afford to pay very much, and there are no resources that I can find to help me get the treatment I need right now" . I feel desperate for help.

"We cannot understand what you go through.", she said.

Very calmly, but assertively I decided to be completely honest about what it feels like to be me, with my illness, in my family. I asked, "Why have none of you ever taken the time to learn about what it is like for a person to be clinically depressed? Or asked me what would help me? Or even sat down and taken the time to find out what it is that I struggle with. Not one of you has read a book, or tried to see how incredibly hard it is for me to manage an illness like this. Why has no one in my family (except my Mom...but she is dead)...cared enough to learn how to help or be supportive of me?"

When I write what I said down, I feel guilty for saying these things. My intention was not to make my sister feel bad, but to get her to see why I might feel so alone and uncared for in the only family I have. For years I have avoided expressing how saddened I am by the lack of support I get from my family. I am desperately in need of some support now, and I don't feel like I can get through this alone anymore.

I cannot imagine one of my sisters, or my dad or stepmom, becoming chronically and severely ill for years, and my not wanting to help them in anyway I could. To me, that is a familial responsibility, and an extension of your love for that person. Caring for family no matter what seems to me what a family is all about.

I know I cannot dictate, or change, how other people feel. People show love and feel love in their own way. People understand the role of, and their role in, the family in their own way. Knowing all that doesn't make me feel any less alone.

I feel like I really am so depressed that unless I can get more help than I have, unless I can somehow get some relief for awhile, I don't think I can continue in this life. It is too much for me to handle. I feel like a person, screaming in constant pain, and there is medication that could help them, but no one is willing to give it to them, and they are unable to get it themselves.

You know what scares me and saddens me about this whole situation (trying to get outpatient ECT, lack of family support, lack of community support and resources, bizarre and unhelpful treatment protocols etc...What scares and saddens me is that I know there are people who are far more mentally ill than I am, whose families have either completely abandoned them, or were never there for them in the first place. Compared to lots of people I have a caring family and I have a difficult time living with my illness. How hard must it be for those who literally have no one? The world is a sad and confounding place to me.

Tuesday, December 01, 2009

Kafkaesque Bureaucratic Nightmare

My life already feels like a bad dream. Today, trying to get the care I need, in the manner I need it made me feel like I must be a character in a Kafka novel.

My province's (BC) Mental Healthcare system's rigid and top down dictatorial, rule bound, and unsympathetic, inflexible bureaucracy seems to forget that people with mental illnesses require "patient's needs focused care" (rather than bureaucracy-needs focused care), just like patients with physical illnesses. Right now I am frustrated, angry, even more depressed. I had an appointment with Dr. X. today, because I want a referral to receive ECT as an outpatient. He contacted the ECT coordinator at the hospital, and they said I had to have someone with me for 24 hours after each treatment. Period.

It didn't matter that last time I had ECT I was fine and able to care for myself a few hours after the procedure. My only option if no one was available 24hrs/day, three days a week, was to go in as an inpatient.

I felt really annoyed and angry about this, thought it was ridiculous and one of those irritatingly bureaucratic rules where people forget that patients have varying needs, and flexibility would go a long way towards helping patients get there needs met. Patients getting their needs met is what a hospital is supposed to be about...isn't it? The next thing that happened showed me just how unpatient focused BC's Mental Health system can be. I have no idea how people who are even more ill than me get the help they need.

So...Dr. X. and I discussed my going in as an inpatient. I asked him what he would recommend for me, knowing how I am feeling, and he thought going in as an inpatient would be the best thing. Despite really not wanting to be an psychiatric inpatient...for lots of reasons: loss of autonomy, stigma, scrutiny, potentially getting a misdiagnosis in my file, because a new doctor sees something in the 20 minutes they see me, that my careful, diligent, and intelligent psychiatrist has not seen in my nine years of treatment, loss of freedom, being away from my dog, having to share a room with someone I don't know, phobia of getting bedbugs or lice from a public bed, etc. The reasons are many and and varied, and each of them really impacts my fear and lack of trust that I will be treated fairly. I am afraid I will be harmed, rather than helped by an inpatient stay.

...despite all that, I agreed to go into the hospital.

This is where the real Kafkaesque bureaucracy begins...
I asked Dr. X. to refer me to the hospital next door to where his office is. This is where I went before for ECT. My experience had been okay, and some of it had been really positive. I trusted that going there would be okay.

What follows is none of DR. X's doing...I could tell he wished he could send m,e to the Mood Disorders ward I went to before. I appreciate all he has done to help me and can see he tried to help me, but the system has too many blocks, rules, and idiotic systems in place to allow him to refer me to the University Hospital...

Dr. X told me he cannot refer to the mood disorders ward at the University anymore. All referrals for inpatient ECT had to be done at VG Hospital's emergency department. I listened carefully, thinking he could send a referral to the emergency department and then maybe they phoned me when a bed became available.

They wouldn't make a severely depressed people, (who had a diagnosis, and whose personal psychiatrist was recommending inpatient ECT), sit in the emergency room all day or all night, go through a slew of questions and questionnaires by nurses, psychologists, social workers, residents and doctors: They wouldn't make me sit in an emergency room when I was feeling this unwell and knew what I needed to do to help myself...would they?

They would. In order to be an inpatient I have to go to the emergency room, sit there patiently and politely for potentially hours, and even then I may not be given ECT.

This enrages me. I do not believe that a chronically physically ill person, who had a specialist who had seen them for years, and who now wanted to refer her for some kind of surgery, or other "in hospital" care or program, would be told to send their patient to emergency, where they would be interviewed poked and prodded by numerous hospital staff, and if and when a hospital bed became available, then MAYBE they would be admitted for the specialist's requested plan of action.

I do not know how, in the 21st Century, so much discrimination, and inadequate and downright awful treatment, of people with mental illnesses is allowed. I am telling you...if ECT helps me I am going to make it my business to fight for changes to increase the accessibility, availability, and flexibility of treatments and resources available to people needing help for mental illnesses.

I will patiently accept my situation right now, and go through all the hoops and rigamarole to get the help I need, because I don't want to labelled as a difficult patient, or a borderline. I need help so I will work within the system for now, however,...

The system has pissed off the wrong person. I am going to make it my business to see that in the future mental health patients are treated with the respect, the patient focused resources, and the dignity every human being deserves. I do not mean I will blame the doctors, or nurses, or even individual administrators. I might blame the governments insufficient funding and support for mental health services:>0

I mean I will volunteer my time to work towards seeing positive structures, regulations and individualized, patient focused support systems and care are available to ALL people with mental illnesses. My first plan of action will be to find a way to ensure that no person wanting ECT is made to wait in the emergency room, when a referral from a regularily seen psychiatrist should make it easy enough to call the patient when a bed is available.