Apr 12, 2009
Tomorrow will be a good day because the TTY I have obtained coverage for will be put in place. It will be good to reach out to people. Today I was indeed quite alone. I haven't gotten home attendant coverage yet. I do have Access A Ride but I need a home attendant to travel. My family was thinking of Passover and of my grandfather who had returned from a cardiac episode (thankfully not a heart attack) and that's where they were. I was thinking of them too and will see what I can do to help out. I did take a walk and it extended for a long period of time and too many blocks and I went to a local park that was quite a bit far off. I started entering into a dissociative state. I came back home and decided to get some Chinese food. Have to regulate my appetite because the Clonidine makes me want to overeat. And there was a period of psychomoter agitation during eating due to dysphagic spasms. At the local Chinese take out restaurant there was only one person there and that was an elderly woman. I wanted to approach her and say that I too was alone on this day but as I am mentally recovered now I have learned to respect boundaries. I have stopped thinking of my home as a prison. I do go out and walk and will get out more but my ideas can travel at the rate of cyberspace. That's much more important.
It might not seem like a live that you would want and frankly I didn't choose this of course. And yes as everything wears off towards night there can at times be suicidal ideations but not ones that I would by any means act on. Still seeking new treatments in development that might help me. But let's look back. The "walk" was tardive akathesia. The dissociative state was tardive dysphrenia as was the dysphoric mania accompanying it and what appeared to be me talking to myself was tardive tourrettecism. And the loss of cognition during psychomoter agitation tardive dysmentia. Why am I satisfied in printing that? Because at least for myself. For one person these ideas are becoming accepted and defined. And the reason the symptoms returned is because I could not tolerate the Zofran. The Zofran treated them. The rhodiola is of marked help as is the ginkgo biloba (both from clinical studies, the ginkgo I am seeking to change as it can increase bleeding and have dangerous interactions with common medications such as asprin, this is being monitored and by no means am I self medicating). But before a year ago no one knew what was going on. I decided to approach the system in a positive manner and be a part of my own recovery. As it turns out (which I did not know before I recovered because I was psychotic) everyone was human. The moment I stopped getting angry about nothing being treatable and brought cogent ideas to the table (not all of which were accepted, remember its a clinician's judgment) that was when I began to be accepted as a consumer advocate. I can think of the last visit to my neurologist who is a movement disorders specialist. At the end of the visit he shook my hand. There was a reason. He saw that I had recovered and wanted to work with the system to help others. The moment my ideas were accepted at that point I had to let go any antagonism and then work together to define my recovery. My recovery is not a paint by numbers game. Its a self portrait painted one brush stroke at a time. We are working on completing it. So everyone can have the mental recovery I did without the neurological disabilities. So what I lost I have gained and truthfully I am ahead. And perhaps for what they are learning from me you will be too not so far off in the future...