“Graduating” from the ACT team

My social worker at the hospital explained to me that after I was discharged from the hospital, following my second episode of psychosis, I would be transferred over to a community mental health organization that would support and help me with my recovery.   He registered me for Assertive Community Treatment (ACT); however, they didn’t have space for me at the time so I was put on a waiting list.  Meanwhile, as I waited,  I was placed in the care of FCMHAS, a local community-based mental health agency.  I met with a case worker every few weeks to discuss how I was doing.  I only saw him a few times before I was discharged.  I waited for a few months before I was finally admitted into an ACT team provided by Providence Care, a local health provider.

The ACT team consists of a variety of health professionals who provide treatment,     rehabilitation, support services to those with serious mental illnesses.  They include a psychiatrist, occupational therapist, nurse, dietitian, social worker and a peer support worker.  Each patient in the care of an ACT team has an occupational therapist or social worker assigned to them as their primary contact or “case worker”, and a psychiatrist.

For nearly two years, I was seen by an ACT team.  The first year I was assigned an occupational therapist as my case worker.  I really liked her.  She was friendly, supportive, and a good listener.  I saw her almost every two weeks and we would discuss how everything was going with me.  We would meet up for coffee, or go for a walk.  She even went with me to an art gallery.   She later moved on to a different job.  Consequently, I was then assigned a new case worker; this time a social worker.  My new case worker was also very friendly, supportive, and easy to talk to.  She would often come by, pick me up and drive me to our outings.  She has taken me to conservation parks, two of our art galleries, and to cafes.  The outings gave me a chance to get out of the house and be in the community.

I also saw a psychiatrist on a regular basis, usually every two weeks.  We often talked about my progress, what I was up to, any changes in my life.  I could ask about my medications, my symptoms, and side effects. It was really helpful to be seen and heard by a specialized doctor.

I have found that the ACT team was really there for me in difficult times.  They were with me when I started a new job.  I told both the doctor and my social worker that I was anxious about it.  They said that it was natural that I was worried, but that the more exposure to the job I get, the less anxious I would be.  I also remembered that after my first day at work my social worker called me and asked how everything went.  I told her it was all right and that it was only a “shadow” the experienced worker kind of day.  But just to have her call to check up on me meant a lot to me.

In late October of this year,  I was told that I was doing really well and that I wouldn’t need the support or services of the ACT team anymore.  I was very disappointed and sad to hear this as I really valued the ACT team.  I liked having someone to talk to about my health, and how my life is going.  I also really enjoyed the outings too.  It was a chance to be social.  I don’t have many friends that I interact with so it was nice to have someone take me out and talk to me.  My case worker said that being discharged, or “graduate” as she called it, from the ACT team was a good thing.  It meant that I was better.  But I will miss it, especially the social interaction aspect.

Concerning Side Effects of Meds

img_0347The first drug that I was given for my schizophrenia was risperidone.   It seemed to have worked quite well as I didn’t have any positive symptoms while on it.  There was however a few very concerning side effects associated with this drug.

One of the side effects was weight gain.  While I was on risperidone, I gained about 20 to 30 lbs.  For most of my life, I was rather trimmed.  It was devastating to carry so much weight around my abdomen.  I felt depressed looking in the mirror at my protruding paunch.   I know for sure the meds were responsible for my weight gain.  When I stopped taking it,  I eventually lost all of the weight that I gained.  Although it took a lot of work, dieting and exercise, I was happy to return to my slender self.  After my second episode, I started taking paliperidone, an active metabolite of risperdone.   Sadly, I regained all of the weight that I had lost.  The two drugs seem to stimulate the appetite, which is why so many gain weight, but I feel like it does more.  I suspect it may also affect how the body processes fat, perhaps accumulating it.

The other worrisome side effect of these antipsychotics is increased cholesterol.  My numbers jumped after being on risperidone or paliperidone.   My cholesterol went from around 4 to 7 mmol/L.  My LDL cholesterol went from 3 to almost 5 mmol/L.   Amazingly, my numbers went down after I stopped taking risperdone.   It climbed back up again when I was on paliperidone.

I don’t like these side effects at all. Not only are they cosmetically not very appealing (the weight gain), but they can also put me at risk for heart disease (the weight gain and high cholesterol).  It seems like these drugs may help with one disorder, schizophrenia, but adversely puts me at risk for another disease.  For now, my doctor says as long as I don’t have any other symptoms like high blood sugar, think diabetes, I should be ok.  I hope he is right.

Overcoming depression

img_0126In the first two years after my first episode, I was deeply depressed.  A significant source of my depression came from my recent withdrawal from graduate studies.  I was upset and sad at the same time because I couldn’t finish my degree that I had spent four years of my life working on.   Then, I had to figure out what I was going to do with my life.  And I didn’t have a another career to fall back on.

At that time, writing was my only employable skill that I could use to make money.  I started writing for an online writing company based in the US.  We were paid for the views we got of our articles.  However, the money was very little, in fact pennies for each view.  I never made any money from my writing.  Later, I was accepted by an online content company in the US.  They sent out titles for writers to write short articles on.  I was able to make about $30 per article.  But I quickly found out that I was taking too long, a week, to produce one article.  So in the end it wasn’t worth it.

One of my friends I knew from school got a job as a data analyst.  She suggested that I  follow her footsteps.  She advised me to learn SAS, a statistical software, so that I was more attractive as an analyst.  So I started learning SAS and also statistics.  It was about this same time that Coursera and EdX came into the scene.  Coursera offered  a course on Data Analysis and I was very excited to take as it was highly relevant.  It turned out to be quite good and useful.  I managed to be become certified in SAS and completed the Data Analysis course in 2013.  And at the end of that year, I found a volunteer Data Analyst position at a health clinic run by Queen’s.

It was also that year that I started getting into the arts.  I would visit the Agnes Art Gallery on Queen’s Campus, and the Modern Fuel Gallery in downtown Kingston.  I love them so much that I became a member of both galleries.  In addition to visiting the galleries, I also posted well known works of Art Masters on social media.  I even started doing some of my own art work using pastels.

These developments filled my life with accomplishment, joy and a new purpose in life.   I now had a “job,” and meaningful interests and hobbies.  I was no longer depressed.  It took several years but I came out of my deep depression.



In Denial

img_0059I didn’t accept my diagnosis of schizophrenia at first.  When the psychiatrist told me that my diagnosis was schizophrenia, I didn’t believe him.  I didn’t think it could affect me. How could I suffer from one of the most severe and serious mental illnesses?

I thought my ideas of a conspiracy against me, that the government was watching me, that people were trying to frame for a crime, that they weren’t a symptom of illness.  But that other healthy people could also imagine these things happening to themselves.  For instance, some people believe that 9/11 was a conspiracy and they wouldn’t be diagnosed with schizophrenia.

During my first episode,  I did have one hallucination.  I saw a grey wolf snarling at me in the hallway of my house at one point.  At the time when I saw it,  I was absolutely terrified.  But that one hallucination, I completely block out of my memory.  I adamantly believed that I never had any hallucinations of any kind.  I thought I was healthy, not schizophrenic.

I finally accepted that I had schizophrenia after my second episode.  That was when I had multiple hallucinations and believed that my family was collaborating with the government to experiment on me.  Today, I see myself as a person living with schizophrenia, for better or for worse.