Category Archives: Diary

An Eventful Week

And again I didn’t write for an entire week. The past week was rather eventful and stressful. I have been distracting mmyself by going on Tumblr and attempting to start something up there. I’ve had one Tumblr account or another ever since 2008 but never quite understood how it works and still I really don’t. However, I’m enjoying the community of mental health users there.

The reason the week was stressful was because of a lot of emotion-evoking events. First, my grandma died Saturday night. This caused a lot of emotions in me, because my grandma was the only family member I had a good relationship with. Her funeral was yesterday and it was good to see a lot of aunts, uncles and cousins I rarely see at all. The funeral service was good. My sister spoke on behalf of the grandchildren. I couldn’t help but laugh at some of the stories she told.

Another emotional event was the orientation meeting with the coordinator from the Center for Consultation and Expertise (CCE) on my situation re day activities. In attendance were the CCE coordinator, my day activities and home support staff, my mother-in-law (who acts as my informal representative), the local authority social consultant, my psychiatric nurse practitioner and me. The coordinator does the first meeting. If she decides it’s necessary, she’ll involve one or more consultants who will help find solutions to the situation at hand.

As it turns out, my day activities staff were hardly open to any suggestions from the CCE coordinator that would allow me to stay at this center. They kept making excuses about my meltdonws (which I haven’t had in a while) causing seizures and aggressive outbursts in other clients. This never really happened. Besides, these other clients get seizures/outbursts from a lot of behavior that other fellow clients exhibit too. I myself witnessed this on Monday.

We discussed the reasons for my meltdowns. Sensory ovelroad, demands and stress often set me off. The CCE coordinator asked whether I’d ever had a sensory integration assessment. I haven’t. It was at one point suggested by another consultant but my then psychologist (the one who kicked me out of the institution last year) dismissed this. Same for the trauma therapy recommended by the CCE consultant when we had a consultation in 2010.

We also discussed my living situation. This had not been the direct reason for contacting the CCE, but now that we had them involved anyway, my home support coordinator suggested we discuss this too. It is really hard. I mean, I experience a lot of stress now that I live independently with my husband. I was open about the worsening of my depression, including suicidal thoughts. I don’t want to die though, so the CCE coordinator asked what I do want. I honestly don’t know. At one point, the CCE coordinator also asked me directly whether I’d have wanted to live independently had the psychologist not kicked me out of the institution. I said “No”. My home support coordinator talked about the possibility of me and my husband moving closer to supported housing. This may be very difficult bureaucratically, as psychiatric diagnoses (including autism) don’t qualify you for long-term care, but maybe the CCE can help us figure this out.

I have mixed feelings about the meeting. I am somewhat hopeful but also a little pessimistic. Since the day activities staff aren’t open to solutions that will allow me to stay there, we’re at the mercy of a possible other day activities center. I hope we can find one.

What I’ve Been Up To Lately

I’ve been meaning to write a lot lately, but I didn’t. All that I started on were random ramblings that I didn’t finish. Today, I’m writing down these random ramblings in a kind of list, in hopes of finally finishing this post.

First, I had movement therpay on Tuesday. It was good in some ways but not good in a sense too. I dissociated a lot. Like the last time I had movement therapy, a part of me came out. This is good, in that it allowed me to express myself in a way I otherwise can’t. However, since my parts are not fully accepted by my mental health team, I’m not sure whether I’ll be taken out of movement therapy for it “not helping”.

Second, on Tuesday evening, my mother sent me and my sister a text message that she and my father were at my paternal grandma’s. She is being kept asleep for pain control and will soon die. This is terribly sad. I mean, yes, she’s 94 and in a lot of pain in addition to having long suffered significant cognitive decline. However, I cherish my grandma greatly. She was an official witness at my wedding in 2011. This was in th eearly stages of her cognitive decline, when she was still just able enough to fulfill this role. I am so glad I had her for this role, as I didn’t have the greatest relationship with my parents or sister at the time, so didn’t want to ask them.

Third, I started at yet another increased dose of citalopram last Monday. I told my psychiatrist on Friday what I’d written down here and she concluded that the medication is helping some but not enough, so she increased it to 40mg a day.

Fourth, yesterday I reached the recomended daily step goal of 10,000 steps despite the hot weather. This is only the second time since I bought my Fitbit activity tracker last February.

Fifth, I’ve been reading some good books lately. I finally finshed Angels with Dirty Faces by Casey Watson, a collection of five previously published mini eBooks. I may post a review soon. On Tuesday, I bought my first Kindle eBook. I wasn’t 100% sure whether it’d work with my screen reader, since it wasn’t mentioned explicitly that it would, but it did. It’s What Every Autistic Girl Wishes Her Parents Knew by the Autism Women’s Network. So far, I’m really enjoying this book.

Changes

This week has been rather eventful and yet, nothing really did happen. A lot of changes are on the horizon for me, yet nothing has really changed yet.

First, I found out a few weeks ago that next week, my primary day activities staff will be leaving the day center. It is great for her, as she’ll embark on a new and challenging path in her career. For me though, it’s quite hard. Some of my other staff and family have been askign whether I mind at all, since I’ve been struggling at day activities and she was the one who filed the incident report that led to my day activities hours being cut. Yes, I do mind, since despite this, I like this staff a lot.

Then on Thursday, I found out that my CPN is leaving too. It’s also to embark on a new and challenging path in her career, but it’s sad nonetheless. My CPN and I have had quite a few misunderstandings over the ten months so far that we’ve worked together. However, I’ve noticed that I did make progress. It seems odd, since both my husband and my psychiatrist have been commenting on how I didn’t get far on the DBT course yet and it’s apparently my CPN’s fautl. Apparently, she should be limiting my bringing up only indirectly related topics.

I know the nurse practitioner who will be replacing her already from my intake interview last year. It is a slight disadvantage that he’s male, but other than that, I think I could get along with him just fine. However, it’s still a bit stressful that so many people are leaving at the same time. After all, my nurse will also be taken off my case. We’re not yet 100% sure who will be replacing her.

On Friday, I had a meeting with my psychiatrist. We discussed my progress on the DBT course, my medication and I mentioned I’ve been rather depressed lately. I did say it’s been going on for half a year already, so if I can hold it together for that long, it must not be that bad. She ignored this comment and proposed to increase the dose of my citalopram from 20 to 30mg. It’s a bit scary, since I’ve been on 20mg ever since 2010 with no med review whatsoever and I didn’t even know why I’d been prescribed it. IN this sense, I like it that my psychiatrist did ask to see me in a month’s time for an evaluation. I really do hope the med increase will help with mood improvement.

Update on Day Activities

I have not written a diary-style entry in a while, even though I hoped it’d help me write more often. The past few weeks have been rather eventful with things needing to be worked out for my day activities. Not that anything concrete has come out of it yet, but today, I am hopeful that something will.

In early February, we had a “big meeting” to discuss how to proceed now that my day activities hours were cut and I would maybe have to leave this day center. It was decided that we’d involve the Center for Consultation and Expertise (CCE) to help us detail my support needs. In the meantime, my home support hours were doubled as to give my support coordinator some time to help me find a new place.

My CPN took it upon herself to call the CCE. I don’t know how the conversation between her and the CCE person went, but they concluded eventually that my problem was mainly my blindness. I didn’t understand why, since I’d been almost kicked out of day activities for self-injurious behaviors and meltdowns – not your average blind person’s everyday behavior. The whole thing frustrated me to no end, as blindness agencies have consistently said that my main problem is definitely not my blindness and now the CCE was referring me back to them.

When I read my CPN’s notes on the meeting in which she told me about her conversation with the CCE, I got an idea where the misunderstanding had come from. She wrote about my anxiey regarding demands in light of my having to learn new skills. I figured she’d told the CCE person about the recommendation that I get independent living skills training, which is not the CCE’s department. They offer consultations in situations where the client falls through the cracks because of severe problem behavior, after all. Resistance to demands does not necessarily present with severe problem behavior, I suppose.

When I asked my CPN for clarification though last week, I found out that she doesn’t even believe I have severe problem behaviors. I’m not 100% sure either that my behaviors are severe enough for the CCE, but my CPN’s reasoning for dismissing my problem behaviors altogether was rather strange: I wouldn’t be able to be married if I had problem behaviors. She also mentioned that I wouldn’t be able to live independently in that case either, which I understand. Then again, with today’s budget cuts to mental health and long-term care, once living in the community, you’d need to be virtually dead to be admitted back to an institution. Maybe a virtually dead person is the kind of case the CCE usually works on too, and in all fairness, I’m not dead.

I was badly triggered by my CPN’s comments. What mostly triggered me was her saying that I had “escaped” an institution. I hadn’t. I had been kicked out.

Later last week, my support coordinator talked to my CPN about her feeling that we should at least try to get the CCE involved based on my full story. We worked on the application this afternoon, but didn’t finish it yet, as I was getting overwhelmed.

As for finding me a new place for day activities, we currently have two organizations we’re still in contact with. Both are organizations serving primarily intellectually disabled people. Neither has offered me an orientation meeting yet, but at least neither has rejected me yet. Two other organizations did reject me and several others, we are still thinking on contacting but are most likely unsuitable.

Considering Getting a Psychiatrist’s Appointment on My Depressed Mood

Tomorrow, I have an appointment with my community psychiatric nurse (CPN). Part of our appointment will likely be about where to go from here regarding day activities. My CPN already E-mailed me that she’d contacted the Center for Consultation and Expertise. They will hopefully take on my case and help me and my staff assess my needs. That will hopefully help us find a new place or get me the right support at my current place.

I also intend to ask her to get me an appointment with my psychiatrist. I feel too embarrassed to schedule one through the secretary. It’s been 3 1/2 months since my last appointment, so in that sense I could request one just for a catch-up. However, I want to discuss something specific with the psychiatrist and I feel incredibly ashamed of it. I’m finally coming to the conclusion that my depression symptoms are getting worse and to a point where I don’t know how to handle them anymore.

I was more or less by chance diagnosed with major depression last year. This came to light when I had my autism-related independent assessment. I had to fill out a screening tool for depression as part of the intake procedure. I scored as severe on that one. I was then evaluated further and was diagnosed with recurrent moderate depression. Because this was an independent assessment, my psychiatrist isn’t affiliated with this hospital and doesn’t need to take over the diagnosis. I don’t know whether she has.

I do take an antidepressant and have since 2010. Same medication, same dose all these years with no med review whatsoever. I don’t even know for sure why I was put on this medication, except that my Abilify (an antipsychotic) had been increased twice in a few months and I was still irritable.

This is the main reason I feel embarrassed about asking my psychiatrist to evaluate my mood. I mean, irritability bothers other people and ttat’s always been the main reason I was in care. Like, in 2007, when I was admitted to the mental hospital, it was really because of suicidal ideation but my staff always said it was because I’d been having public meltdowns.

I don’t know whether I truly believe that psychiatry’s job is to keep people, or me specifically, from being a pain in other people’s asses. I don’t think it should be. However, I’m rather afraid that my psychiatrist thinks so at least in my case. I’m not exactly sure why, as so far she’s been pretty understanding. I guess they may be left over feelings from all these years being treated like a cumbersome waste of resources.

Keep Calm and Carry On Linking Sunday

Cuts to My Day Activities Hours

And again I really didn’t get to write as much as I’d like to have done. The past week was quite busy. I had my first session of movement therapy on Tuesday and a meeting with my nurse on Thursday. Actually, I would’ve had a session with my CPN, but she’s off sick. I was so grateful that my nurse asked whether I wanted an appointment with her instead, as I really needed to talk.

I’ve not been doing well lately. I’m very irritable and easily overloaded. I switch a lot between being completely in my “rational mind” and feeling terribly emotional. I try to use my DBT skills, of course. Not that I’ve come far on the formal DBT course I do with my CPN, but I’ve been doing it by myself. I do an okay job when I’m not overwhelmed, but once overwhelmed, all my skills go out the window.

I mostly find that I can’t handle this huge, gaping split between my (verbal) IQ and my emotional, practical and behavioral functioning. At day activities, this is becoming more and more problematic. The staff are telling me that my irritability upsets the other clients, who are “like a baby” and can’t understand. I tell them that I don’t understand stuff myself, either, but because I’m not intellectually disabled, I should somehow be able to be more capable.

Because I’m too much of a handful, my day activities are being reduced. I won’t get additional home support in exchange. This upsets me greatly. It feels as though, when I need more help the most, I’m punished for it by getting less. Again, the main reason is my IQ, because other people with significant behavioral challenges at my day activities, get more care.

“We don’t do psychiatry.” That’s my day activities staff’s reasoning for cutting my hours when I’m too irritable. The other staff even mentioned finding me another place to go. I don’t know where. I mean, day activities for mentally ill people cater mostly to those with psychotic disorders. I have experience with that and I run into the same crap I get here there. After all, people with schizophrenia can’t help reacting to their voices either.

For clarity’s sake, I’m not saying that people with severe intellectual disabilities or those with actively psychotic schizophrenia should just be able to hold it togehter. I know they can’t, but I can’t always hold it together either.

I know my staff try their best. The staff who decided to cut my day activities hours, got angry when I told her they’re expecting too much out of me. I know she’s never worked with a person of at least average intelligence who still has signiificant sensory issues and challenging behavior. I know the manager probably told her to prioritize her main focus group, ie. those with severe intellectual disabilities. It’s interesting that she refers to the other clients as “the clients”, not “the other clients”, when she talks to me.

However, I can’t keep from being reminded of all the great lengths to which the staff go to accommodate their other clients with challenging behavior. For one person, a staff goes to his group home to provide him day activities one-on-one. Two at my group get several hours of one-on-one too. I don’t ask for that, but I don’t ask for the other extreme, ie. being cut off my hours, either.

First Week of 2018

Oh my Gosh, it’s beginning to get boring: I haven’t written on this blog in almost a month. I want so badly to write more in 2018, but instead of wrting on this blog, I’m writing brief entries in my journal on my phone. I love it, don’t get me wrong, but I love my blog too.

It has been on my mind for a while to start writing in diary style on my blog. Of course, I can’t share everything I can in my private journal here, but I can share some things. I love the personal mental health bloggers who share what it’s like living with mental illness on a day-to-day basis. So for this purpose, I’ve created the “Diary” category on my blog. Feel free to skip these entries if you’re not interested in them, but if you are, I’d love to hear your thoughts. Today, I’m sharing about the first week of 2018, obviously.

The year didn’t start out that well. I was a bit overloaded and stressed out. I was perseverating on finding a good journaling app for my phone, because I badly wanted to start journaling privately again in 2018. I’ve tried a few apps on the computer and a dozen websites, but I can’t find any that work. By 12AM Monday, I said a quick “Happy new year” to my husband and sister-in-law, who was celebrating with us, only to return to my phone again. In the end, I found a great app: Dyrii. Still, judging by how easily I write this post versus my journal entries, I’m finding using Notepad on my computer is still easier than my iPhone.

I had been going to day activities as normal between Christmas and New year’s, so I only had Monday off, but it felt rather strange to return on Tuesday. I had been informed before the holidays that we’d be getting three new clients in my group at day activities in January. For those who don’t know, I go to a sensory-based group for people with severe intellectual and multiple disabilities. All clients except for me need help with their personal care. The reason this group still fits me is that I’m very easily overloaded and prefer the sensory way of learning. We currently have one group of six clients, including me, in the main room and two clients who are very easily overstimulated in the adjacent room. Come January, I and two of the other current clients would move into the adjacent room with these two clients who are already there. As it turned out, that hasn’t happened yet, because the new clients aren’t there yet.

The total group size will grow from eight to eleven. We won’t get extra staff. This was a stressor to me, as was all the talk about the one-on-one for two clients that needs to be well-arranged in order to make this work, as well as the talk about a client needing one-on-one for meals. It was suggested there’d be no more activities but just meals and personal care moments. This suggestion was made on Wednesday, when I was already pretty badly overloaded and stressed out. I tried to calm myself by thinking I could use my computer or phone if I wanted to do something but there’d be no support available. So I retreated into the adjacent room to use my phone, only to be overwhelmed by people yelling in the corridor. This sent me into full-blown meltdown. I mean, if I can’t use the adjacent room without being overwhelmd now, how will I do so once my two fellow clients join me? I know these are the quietest clients, but still.

Looking back, I am lucky that my staff didn’t see the entire event. I banged my head against a wall, which my husband later asked about whether it got me suspended from day activities. I only then realized that it could have. The only part my staff witnessed was me trying to run away and being pretty irritable. My staff took me to the snoezelen (sensory) room and I had to stay there for fifteen miutes. Then she returned and we talked stuff through.

I called my mental health team, which is a kind of team that always has a community psychiatric nurse on call during office hours, as soon as I got home. The on-call CPN advised me to always have a PRN Ativan with me. I used to always have one with me until my last overdose, when my husband took them away. I haven’t needed it since. The on-call CPN also advised me to call the out-of-hours phone number I’d been given last week whenever I need it. I had been hesitant to call them during the new year’s week-end, as I reasoned my husband was home so I should be able to work out things with him. I haven’t needed to call them since speaking to that CPN though. In fact, I’m pretty calm now. Maybe I needed to melt down in order to calm down again.