Monthly Archives: June 2018

#WeekendCoffeeShare for June 16, 2018

I have seriously been meaning to write more and have had a few ideas floating around my head. Someohow though I could never find the energy or motivation to actually sit down and write a post. This week, a lot happened, so it’s about time I join in Alli’s #WeekendCoffeeShare again.

If we were having coffee, first I’d tell you all about the visit to a few possible new day activities places last Monday. There were four places that I would be visiting: a day center like the one I go to now, an industrial workshop, an arts place and a farm. The care consultant explained about each place and said the farm was pretty large and low-support, so I would most likely not be able to do much there. I don’t like industrial work, so I turned that one down too. The arts place, we did visit, but it didn’t turn out to be suitable. They mostly do textile arts, painting and drawing there, none of which I can do. They also do ceramics, which I can do but don’t usually like. It was also rather crowded and noisy there.

The day center consists of four groups, two of which are relatively high-support. I was shown around these two groups. The first one, which is the highest-support one, seemed really suitable. They have arund a 1:5 staff/client ratio, which is similar to my current group and is doable for me. The group seemed a little more structured than my current group. They go for walks regularly. They also have a garden with some swings and a rocking lounger. The center has a sensory room near this group. I spoke to one of the staff for this group, who happened to have seen me at the horseback riding school a few times. You see, some people from this day center go horseback riding there too. They also go swimming every other Tuesday. I assume this is only for peoople for whom a volunteer buddy can be found, but I hope that should I transfer here, I can do this too.

I was up front about the fact that I could have meltdowns if my irritability isn’t acknowledged and dealt with on time. I think though that if I transfer here, the consultant from the Center for Consultation and Expertise (CCE) can help us figure out a good support plan.

We also visited the other group, where people do mostly table-based activities. This group was a little more crowded and lower-support and I like walking and sensory activities more than table-based tasks. I ultimately chose to try out at the first group. On June 25 and 26, I’ll be spending the mornings there. We’ll be evaluating this on the 26th. I have decided to wait to potentially transfer till we’ve spoken to the CCE consultant on July 31.

I can’t convey through writing how excited I am about this possible new opportunity. I really hope it works out. Transportation may be an issue, but I have my hopes up that this will be sorted out.

Next, I’d be sharing about my next session of dialectical behavior therapy (DBT) with my nurse practitioner. It was good. We discussed rational, emotional and wise mind. Wise mind is like intuition, the integration of emotion and reason. One of the goals of DBT is to get into wise mind more often.

Last week, I had called the on-duty nurse at the psychiatric unit because I was close to a crisis due to feeling very lonely. I had initially felt really bad about having called, because loneliness is a common reason for me to land in near-crisis and need to call them. My nurse practitioner validated me, saying I don’t have their phone number for no reason.

If we were having coffee, I’d share about my weight loss this past week. I lost 1.5kg in just over a week. Now this evening we went to an all-you-can-eat restaurant, so I’ve probably gained it back, but I’ll lose it again soon enough. I also met the recommended daily step goal (10,000 steps) again on Wednesday.

What have you been up to lately?

Issues Surrounding Psychiatric Medication

Yesterday, Lydia of On The Borderline wrote an interesting piece on the stigma surrounding psychiatric medications and opioids for chronic pain. Today, I am going to add my own two cents to the conversation on meds.

Like Lydia says, many people, including patients, fear that psychiatric medications will change the person taking them, turning them into a zombie. I must say there is some truth to this. However, it’s hard to tell whether the medication is at fault or it’s the person’s illness. For example, as regular readers know, I spent a long time in a psychiatric hospital, including on a long-term care unit. Most people there have severee, treatment-resistant schizophrenia spectrum disorders. Most people who fall into this category were indeed heavily sedated and could be seen as “zombies”. However, the term “zombie” is a rather derogatory term for any human being, mentally ill or not.

When I started medication in 2007, I was indeed afraid of the antipsychotic I got prescribed turning me into a “zombie”. I was on a low dose of an atypical antipsychotic (which seem less sedative than classic antipsychotics) and it didn’t sedate me that much. It did keep me somewhat calmer than I was without medication, though I still felt pretty much as miserable.

This brings me to another issue that I touched upon in my comment on Lydia’s post: medications aren’t there for behavioral management. Okay, that may not be entirely true, in that severely aggressive people may benefit from medication for behavioral management if nothing else works. However, it’s a last resort and care must be taken to assess whether the patient actually feels better or they’re just too drugged up to make their feelings known. In this sense I, being a former long-term psychiatric hospital patient given medication for behavior control, have a different perspective to Lydia. She, after all, seemed to assume in her post that it’s stigma that keeps people from taking medications that could make them feel better.

Not that this didn’t happen in my own case, but in a different respect. I was taught in my years in inpatient psychiatric treatment, that medication is pure behavior control and how I felt didn’t matter. This not only got me to take medications I feel I didn’t need, but it also kept me from getting medications I did need. This is the case with my antidepressant. I was finally diagnosed with recurrent, moderate major depression in 2017 when I sought a second opinion on my diagnosis. I’ve probably been suffering depression off and on since at least age ten, but it was masked by my challenging behavior. Because I with good reason didn’t expect anyone to care about my mood if it wans’t bothering the staff, I was never treated for depression while in the hospital. Finally, earlier this year, I got a psychiatrist’s appointment to discuss my mood and was prescribed a higher dose of my antidepressant. (I had already been put on an antidepressant several years earlier, but don’t ask me why.) It seems to be working now.

What Would It Take for Me to Be in Optimal Physical Health?

Yesterday marked one year since the start of my weight loss journey. At the time, I’d set myself a goal of having a BMI under 30 in a year, which would mean I’d lost approximately 10kg. Well, I reached that goal last January, maintained it for a few months and gained weight again this past month. I’m now almost where I was last December. I need to lose 2kg to be at a BMI under 30.

I originally intended to write a post about my weight loss attempts and how I’d been doing. That got rather boring. I didn’t reach my goal, but I got close. As my husband says, I got an 80% on my weight loss exam.

Rather than boring you with my weight loss stats, I want to write about my physical health as a whole. I picked up the 24-day whole health journaling challenge from Mari L. McCarthy again. I started this challenge several years ago, but never finished it. One of the exercises at the beginning of the challenge is to write out what comes to mind when you think of your ideal physical well-being or balance. Here goes.

If I’m in optimal physical health, I’ll wake up rested each morning after sleeping eight to nine hours a night. This means I’ll have a good quality of sleep, which also hopefully means I won’t snore anymore. I won’t sleep during the day and will not sleep more than ten hours on the week-end.

I’ll eat a balanced diet. I am allowed to enjoy salty snacks or sweets once in a while, but mostly will snack on vegetables and fruits. I will drink at least two liters of water each day. If needed, I’ll take my Metamucil for constipation, but I hope to manage that with diet and exercise. I will find out what foods trigger my irritable bowel syndrome. As a result, I’ll not feel bloated or get bowel cramsp anymore. I will also not get acid reflux anymore. I can manage this with medication, but I’ll also practise slower eating.

Once in optimal health, I am able to walk for 5km without getting exhausted. I will reach my Fitbit’s recommended daily step goal (10,000 steps) a few times a week through regular walks and other exercise. I will go on the elliptical for at least 25 minutes five days a week. I’ll also do weight lifting exercises three days a week. I’ll steadily increase my weight bearing ability.

In summary, to reach optimal physical health, I’ll eat healthfully, exercise regularly and practise good sleep habits. This will help me feel energized and fit and lessen my physical symptoms of irritable bowel syndrome and reflux.

#WeekendCoffeeShare for June 3, 2018

Welcome to this week’s #WeekendCoffeeShare. I’m a little late this week, as yesterday my husband and I spent most of the day at my in-laws and I didn’t have my computer or external keyboard for my phone with me, so I could barely type. So grab a cup of your favorite drink and sit with me as I write about this week. I’ll have a cup of green tea instead of coffee even though it isn’t terribly late here yet.

On Saturday last week, I finally went onto the scale again. I hadn’t weighed myself in a few weeks. As I feared, I had gained weight, but even more than I expected. I’d gained 2kg. I was so angry with myself. I mean, yes, we’d eaten pizza three evenings that week, but that couldn’t possibly explain such a huge weight gain. My husband tried to reassure me, saying I was probably constipated. This may be so, as the next day I’d gained another 800 grams. Tomorrow marks one year since the start of my weight loss journey and I’m afraid I will not reach my goal of having a BMI under 30. Then again, last January, I did reach this goal already and stayed at that weight all through early May.

On Sunday evening, the Center for Consultation and Expertise (CCE) coordinator E-mailed me and my support coordinator. As we’d had the meeting with her on the 15th of May, she’d planned on discussing my case on the following Monday but hadn’t realized this was a bank holiday. She had eventually discussed me with her colleague and had decided to ask a consultant to focus assessment on my needs and wishes rather than on a diagnosis. On Tuesday, she E-mailed us again to let us know she’d found a suitable consultant and we’d be contacted again to set an appointment for a first meeting.

My support coordinator had also inquired about getting long-term care funding for me. Whether this is possible, depends on whether my blindness is the primary reason for my care or my mental health or autism. If it’s blindness, I may get long-term care funding, whereas if it’s autism or mental illness, I definitely won’t. Long-term care funding would enable me to move to supported housing for the disabled or get more support while living with my husband.

On Thursday, I had my first session of dialectical behavior therapy (DBT) with my new nurse practitioner. DBT was originally developed for treating people with borderline personality disorder (BPD). It’s usually group therapy. Though I do have BPD traits, I’m also autistic, which means that group therapy would be hard for me. I therefore do the DBT individually. I had already started DBT with my community psychiatric nurse, who left recently. My nurse practitioner, who took over from her, proposed to start at the beginning of the therapy manual again. We only managed to work through the first page, which details the goals of DBT. There are four skills domains on which I’ll work: mindfulness, emotion regulation, interpersonal effectiveness and distress tolerance.

I also realized as I was talking to my nurse practtitioner how angry I still am at the psychologist from the institution who kicked me out almost with no after care last year. My nurse practitioner did the intake interview for this team with me last year and mentioned how he and the psychiatrist got a totally different impression of me than said psychologist had painted. The psychologist had diagnosed me with dependent personality disorder for claiming care I supposedly didn’t need. She removed my autism diagnosis. The nurse practitioner and psychiatrist saw pretty soon that I’m not dependent at all. Yes, I need a lot of support, but that’s due to my disabilities (including autism), not low self-esteem. In fact, I just realized how this psychologist had in fact broken my self-determination. I don’t feel safe to ask for help much now and am a lot more passive than I was when I had this dependency diagnosis. My nurse practitioner validated my feelings, in fact saying that the reason for the CCE involvement is in part the poor after care this psychologist had arranged for.

On Friday, I went adaptive horseback riding again. Angie, my horse, was scared of a car passing by and attempted to go on the run while I sat on her back. This was terrifying. Thankfully, I managed to keep seated on her back. She was quickly calmed down again, but I was shocked for a bit aftwards. So was the girl who held the horse. Thanfkully, the instructor always walks beside my horse because of my blindness, so the girl wasn’t on her own. I still had fun horseback riding.

I’ve yet to think of what I want for my birthday at the end of the month. I will have to look at sensory toy shops for inspiration. I’m also thinking of starting up the soap making craft again, so maybe I’ll ask for supplies for that.

What have you all been up to this past week?