Advocating and Services

We had a meeting here on Monday about my services (SCL, IPR, case management).  Honestly they didn't seem to have much of an idea what the hell they're doing.  My case manager is new to her job as is the woman who will be my SCL worker.  I feel bad for the people who aren't as high functioning as I am who have to just hang in there while these people learn how to do their jobs.

Don't get me wrong, I've been new at my job before, but in these positions (the social worker at the facility, case manager, SCL worker) I feel like they lack the experience and education to just be let loose.  These people are crucial in some peoples' lives, some of them that can't stand up and say what they need.

I feel people would be more prepared for these jobs if there was more mental health funding.  Without decent funding these organizations can't hire people who have some idea what the hell they're doing.  People are hired to help the mentally ill that are nowhere fit to be because there's not enough funding to only hire people with a mental health background or schooling.  People are hired to pass medications without any idea about possible interactions and side effects.  I wish I could say every mental health patient is as familiar with their needs and their medication as I am.  That's why people like me need to fight for those who can't fight for themselves.

I have been trying to find ways to become an advocate in ways that are not detrimental to my own health.  Because of my strong need to take care of others and my guilt issue when I can't be there, I don't think being a peer support person would be good for my health.  I mailed letters to my congressmen asking them to support more mental health funding.  I emailed the University hospital's psychiatric research department to see if I could be of any help in any of their clinical trials.  I've been trying to find places to post links to my blog so people can find it and hopefully not feel alone in their illness.

It's discouraging, really discouraging actually, how limited I am in helping others.  I don't have much financial resources to donate to the advocacy groups.  I'm worried if I get personally involved that I'll start to feel obligated and not be able to say no when things get to be too much.  Not to mention that when I tried to volunteer it was a trigger for a depressive episode complete with psychotic symptoms.  I am very passionate about what people with mental illness deserve but I feel so helpless to do anything.  As much as I want to help people I definitely don't want to to get sick trying.

It's very hard for me to make personal supports without falling into my habit of helping till it hurts.  I find making relationships with professional supports much easier.  There are boundaries that keep them from leaning on you too much.  It's usually a very mutual relationship, with each person only contributing so much.  That's why I'm sort of looking forward to starting my services.  Not to mention they'll get me out of the house more than once a week.

I've started doing yoga in an effort to lose some of this weight I put on thanks to my psych meds.  If I am able to lose at least some of the weight I know I'll feel more comfortable going out in public.  My dad has all my senior pictures, which are pretty hard to look at.  I was going through I really rough time around then and the way I was looking at my future...and now I'm here.

I guess I need to find hope in the fact that I have come a very long way from when I had my onset.  I am much more self aware and I know my illness and that really helps me manage things in a better way.  As much as I'd like to jump into a million projects to help people with mental illness I know that it won't do them or me any good because I know my triggers.  Experience counts for something, right?

I want to close by thanking everyone who reads my blog and the administrators that have added it to their blog directories.  I also want to recommend a book:  Surviving Schizophrenia, the 5th edition, by E. Fuller Torrey.  It has helped me to understand so much more about my illness and helped me find new ways to explain to people what it is I'm going through and why.  I recommend checking with your library first, but you can find it online for around $15.  Here's one place you can buy it:

http://www.amazon.com/Surviving-Schizophrenia-Families-Patients-Providers/dp/0060842598

Also, if you haven't checked out my Facebook page dedicated to this blog, I've posted links to websites that have helped me along the way on there.

https://www.facebook.com/MemoirsOfASchizoAffective

Facebook...

I now have a Facebook page dedicated to this blog.  You can see it at:
https://www.facebook.com/MemoirsOfASchizoAffective

And you can like it on the left side of this page.  I am in the process of adding pictures, mostly quotes.  Enjoy.

Back to Life...

When I told the social worker at the facility that I was excited to get back to my life I guess I had forgotten what my life consisted of.  I'm not saying I'm not unbelievably happy to get out of that horrible place because I am.  I'm grateful to have a great place to stay while I get money saved up for a car and my own place.  Being here, in Webster City, the city I graduated from high school in, has brought back a flood of memories; memories of who I used to be, memories of past loves and friends, and memories about the way my mother was back then.

So much here has changed.  From what I can tell not many of the people I used to know are still here.  But it's the idea of running into one of those people, talking to them, that makes me want to never leave the house.  I don't know how much about my illness and life people around here know.  I know that if they ask me just about anything, or even just seeing me, I'll be embarrassed about what I say and look like.

When I lived here I was barely over 110 lbs and, I would venture to say, beautiful.  (I have the pictures to prove it.)  Since I started the psych meds, certain ones more than others, I gained around 70 lbs.  I've since lost very little even though my doctor had said I would go back to my original weight with the new medication I'm on.  And with the sometimes rapid weight gain I was introduced to stretch marks.  There is only a trace left of the person people saw back then.

Everyone changes over time, but in the past seven years I think I've changed more than a lot of people my age.  I have battled my illness and troubled relationships to a place where I have come to accept these things.  I accept them but I am still emotional about them from time to time.  I've been open with so many people about my illness; their reaction ranging from acceptance to abandonment.  But out of these people I've been open with, very close to none have known who I used to be.

When I was in high school I was very close to an A student until close to my early graduation when my depression became more than I could handle.  I was very independent and a hard worker and made more friends at work than at school.  I always had a drive to do my best.  I had assumed all the way through high school and for a short time thereafter that I would get, at minimum, a bachelor's degree and end up with a great job.  As you can see, that was not in the cards.

You can imagine that explaining why I'm back here, on disability, 70 lbs heavier, unable to have children, and living with my dad is something I have been avoiding.  I know what everyone says about my illness not being anyone's business and that I don't have to explain myself to anyone.  But when it comes to small talk around here what you've been doing since high school is usually on the top of the list.  I don't know what my dad has told people and I've considered just being vague, but honestly I have no idea what to say.

I keep telling myself there's nothing to be ashamed of or embarrassed about; that this is not my fault.  Still, small town stigma about mental illness is not something you can just forget about.  Hell, living in the city isn't all that much better.  Saying to someone around here that you have schizophrenia doesn't give them the message that you have a brain disease caused by genetic and biological factors.  People hear schizophrenia and they think about people talking to themselves with split personalities that are prone to violence.  Schizoaffective disorder doesn't have the same relatable ring that depression does.  It is alien, inhuman, to them.

On Monday my case manager and my SCL worker will be meeting with me to set up services.  I just cannot wait to explain who my worker is when we run into someone I know. "Hi, this is my worker."  Again I know that it is none of their business, but in a small town it's hard to hide anything.

The memories this town and this general area of the state bring back are strong.  I've been thinking about things day by day and pushing anything that's not the present out of my mind.  Now I can't leave the house without remembering a friend, an ex, a party I went to, a house I lived in.  I didn't take any of that into the equation when I decided to come back here.  I hope that making new memories will make this a little easier on me.  Soon I hope to get my first haircut since I've been back so I guess that's a start.

I always said I would never be caught dead on a motorcycle.  Well the idea of my dad being the driver bent my resolve and we've gone on many rides since I've been here.  I have to admit, while I still have my fears, I've caught myself thinking about getting a motorcycle some day.  A car and an apartment are pages above it on the list, but it lingers in the back of my mind.

Spending more time with my dad for the first time in a very long time has been good.  We get along well and I feel a sense of purpose by helping with his new business idea.  I feel comfortable here (at home).  I know he doesn't understand all aspects of my illness but I have services to help with that area of my life, not to mention my own knowledge and experience.  I'm taking my meds as I should (as I always do) and have my first psych appointment on Friday.

I am having a little problem with headaches, which I have had before.  I used to be plagued by them everyday with migraines a couple times a week.  My neurologist and I tried a couple of medications before the one I'm currently on.  It's actually a blood pressure medication that, for some reason, helps with the prevention of headaches and migraines.  My neurologist told me not to take pain relievers more than two times a week to prevent rebound headaches.  Now I've caught myself taking ibuprofen every day.  I've decided to scale it back to the recommended amount and if there's no change, give the doctor a call.

My hip and back problems are better to the point I've stopped taking the muscle relaxers and nerve pain medication almost completely.  Of course, trying to avoid taking them (along with the headaches) has increased my ibuprofen intake.  I may have to use the muscle relaxers a little more in exchange.

When I first got here I was having some psych symptoms, which I am attributing to simply the stress of the move.  Hallucinations were popping up here and again along with paranoia, but they have almost resolved themselves completely now that I am more settled in.  I have (of course) been using my coping skills as needed.

Speaking of using coping skills:  I had to change my phone number (again) because my mother started texting me, ranting about me saying things to my brother (that I actually didn't even say) and about how my dad poisons me against her.  I find it incredible sometimes how she, a grown woman, can't manage to take responsibility for anything.

That's all for today, more to come.