Some things I wish I knew years ago...

Dear People who Suffer from Side-Effects Like Nausea, Dry-Mouth, Tiredness, and so on,

When I was first diagnosed over 10 years ago, nobody really told me much. Mind you, I think I was pretty young, and so I'm going to optimistically believe that they just didn't want to burden me with more than I was already dealing with.

I was put on medication pretty much within days of my diagnosis, and while it was clearly explained that there would be side-effects, there was never much followup about what that would mean, and where I could go to find help for my side-effects.

One of the first side-effects I noticed was hunger... I always had a low grade rumble in my belly that felt better when there was food in it. I think this side-effect exacerbates the weight gain problems that happen in a lot of people who take atypical antipsychotics.

My solution for this rumbling was to eat... all the time... but to eat food that had super high amounts of protein - and just to snack perpetually while avoiding large meals. (Since I was feeling consistently fullish from my perpetual snacking.) Luckily, my solution worked, since I managed to combat the rumbles, and I didn't gain significant amounts of weight.

Another negative effect of my medication was sleepiness. I was so tired all the time. My solution was twofold: For many years I arranged my schedule to start my dater later than everyone else so that I could sleep a little longer and to take an afternoon or morning off from school or work during the middle of the week so that I could catch up on sleep. This worked for me as a student and as a part-time worker, but has some pretty obvious limitations in the 9 to 5 working world.

The side-effect that bothered me the most was dry mouth. Because of dry mouth I have had problems with dental decay and with canker sores.

Little did I know up until about a week ago that there are actually products that you can use to help ease dry mouth and its associated problems. Why on earth did no one tell me this?

I remember telling my family doctor and my psychiatrist about dry mouth problems. And I know that more than one dentist pointed out that I may have dry mouth due to some of the things they saw. So why did not one of these health care specialists think to inform me about the things that were available to help this.

As a poor university student I often had to gather my pennies together so that I could get dental work to repair the damage caused by "insufficient oral lubrication." Now as an adult without dental coverage, I find myself still having to pay for dental problems that began long ago.

I really wish that someone would have asked me long ago about my side-effects. I wish they would have been specific in their questions. And mostly, when I complained, or when they noticed something was wrong, I really wish they would have taken it upon themselves to inform me of the things I could do to help make my life easier and more comfortable.

There is a lot of self care that is required when you have a problem of mental health. And sometimes it's just almost too much to bear to deal with the disease itself (and the discrimination issues it often carries). Why have I had to deal with the additional time-consuming burden of experimenting with schedules/organization/products when this information is out there, but just not readily available to me?

Is it time for a What to Do When You're Expecting (A Bout With Mental Health Problems) handbook for psychosis and/or other conditions?

Seriously. Shit. So much of my time and money wasted on problems that could have been solved before they even started!

Tucking her pennies away for another cavity,
O.

What do they see when they start on their path?

Dear People With "Lived Experience,"

Little hypothetical story here to clarify the nature of this post:

Okay, so say you're 20ish or something. And you've been dealing with some problems of hearing voices, and thinking that people are out to get you. And maybe you've been hiding away from people and neglecting your hygiene.

Somebody says, let's get you to a doctor to see what's up.

So you go. You do some tests. Some of them are pencil and paper tests. Some of them are verbal tests. Some of them are performance tests. Maybe others are medical tests.

Tests come back, everyone's suspicions are confirmed: you are now diagnosed with a condition you've only heard about in the movies. Schizophrenia or maybe even Bi-polar if you have some cycling going on.

/story.


So you look at your life. What do you see?


Based on the media, it's not a rosy picture.

Based on public perceptions, it doesn't seem to be any rosier of a picture.

Based on the statistical likelihood of being gainfully employed, well, the picture is just nosediving now.

Based on discriminatory laws across the world the picture just sinks to unfathomable proportions. (limitations of travel, limitations on insurance, limitations on housing, limitations on employment, limitations on serving your country or your community, limitations imposed by the way the legal system is organized... limitations, limitations, limitations... )


So with a diagnosis, I see a lot of limitations. Funny thing is, I only see these limitations after living with my diagnosis for 11 years. I'm no longer a child living under anyone's protective wing. I'm an adult, trying to carve out a life for myself. When I was younger and living with my diagnosis, these things just didn't affect me, since I didn't really have to move outside of my comfort zone too much.

To be honest my diagnosis is fucking hard to deal with in the real world... The real world being the world that dictates that I need to find a job because I have bills to pay, and I need to feed myself and my ravenous furkids. The real world that makes me crave the companionship, friendship, and intimacy of a lover. The real world that tells me that one day I may want to have children, and god forbid, achievable dreams! (The real world that tells me that all of these things are "healthy" and are "milestones of recovery.") And now that I'm starting out in my adult life, I'm seeing exactly how profound my limitations are. And I'm seeing the barriers that life forces me to hurdle just to reach those milestones... achievements that seem relatively effortless for people standing on the other side of the fence.

And the paradox in all of this is that I've tried to find the best place for me in this world. I shaped my life consciously from the time I was diagnosed to find a place where I would have the greatest likelihood for personal and economic success for someone of my education and experience. And so I thought I found my "place." And I'm looking at that place, I'm standing on the threshold watching everyone move around and interact in that place, and I still don't fit in. I'm beginning to think I just don't fit in anywhere.

Too sick for the "real" world. Too healthy for the services and amenities provided to people who live with a diagnosis like mine. Too different ideologically from the people who are trying to build a new, supposedly inclusive, system... a "new" system that paradoxically believes that by labelling me and "outing" me, it is setting me free.

I'm not trying to get anyone down. I'm not trying to make anyone feel helpless, even though I'm feeling a little helpless at the moment.

I think what I'm asking is: What can we do about it?

How do we fix this?

Why do I, after living with this disease for 12 years... after spending nearly 12 years learning how to cope and make sure that I am the healthiest person I can be... why do I have to deal with THESE particular issues now?

These "particular issues" being issues that relate exclusively to social injustice and discrimination.

If the disease itself doesn't kill you, the injustices that come along with it certainly will.


When we talk about suicide and the despair of mental illness; the despair isn't having to live with the disease. The despair isn't really about having to wrestle with symptoms or deal with medications.

The despair is about the social injustices we confront. The social injustices that affect us on a day to day basis. The social injustices that tell me that I'm not equal to every other person in the country I live in.

This is what kills us off when we stare down that long tunnel of life.


What do WE do? This issue is bigger than me. This issue feels stronger than me. I'm at a loss. I really am.

My instinct is to fight. But what does that mean? What am I fighting? Who am I fighting? How long is the fight going to be? What will it cost me, and what will it achieve?


I keep telling myself before I go to bed that when I wake up, tomorrow will be a better, brighter day. Tomorrow I will wake up, and I won't have to worry about my safety, my comfort, or my security.

I think the only thing that keeps me going is my hope for the future, since my present is a very grim place.


Keeping my fingers crossed for a brighter day (and sorry if I killed your buzz!),
O.

PS:
*tomorrow will be a better day, tomorrow will be a better day, tomorrow will be a better day, tomorrow will be a better day, tomorrow will be a better day, tomorrow will be a better day, tomorrow wil be a better day... *

dear people, welcome.

Dear People,

Welcome to my blog.

I like hamsters, and cats, and lemurs. Fish are ugly, and I refuse to eat anything that has a tentacle on it for fear of being strangled.

Music is good, but not if it sounds like banshees shrieking, or guitars being sodomized.

Many moons ago, I was diagnosed with an inability to differentiate what is real from what is not real. The doctors and scientific community call this "inability" psychosis.

Life has not been easy, living with such a diagnosis. That fateful day, when my psychiatrist uttered those dreadful words, was the worst day of my life. As the words poured out of his lips, time slowed, and I could sense that searing hot iron of stigma burn the words "mental illness" into my brain. I was branded. Forever, and ever.

In the age of information, stories are few and far between. This blog is my story... and maybe yours too.

More to follow.

Love,
O.