Tag Archives: Mental Health

DID Awareness Day and Plural Pride Day 2019

Today is DID Awareness Day and Plural Pride Day. I really want to share something for it, but I struggle with knowing what to share. I haven’t written about our experience of being plural in a long while, so maybe today I should jump at the opportunity. For today’s post, I am just going to introduce the subject of DID and our system to people who may not be aware.

Dissociative identity disorder (DID) is a trauma-based mental health condition in which the sufferer experiences two or more distinct identities or personality states, each with their own unique way of perceiving and relating to the world. People with DID also have amnesia for important information either in the present or past that is too extensive to be due to ordinary forgetfulness. People who do not have this type of amnesia, or whose identities are not fully formed, may be diagnosed with other specified dissociative disorder (OSDD) type 1A or 1B.

We were diagnosed with DID in 2010. At the time, we could be pretty in your face about ourselves, because we were in an environment where we felt relatively safe to be ourselves. This, however, also opened us up to suggestion, as our therapist concluded pretty early in the process that we have DID. Normally, a diagnosis of full-fledged DID is not made after initial assessment, but requires at least six months of therapy with a DID therapist.

Anyway, we probably do experience some level of amnesia, but didn’t know how to explain it to our therapist. For this reason, we would report we didn’t remember something, even though we showed in our actions that we did. This got people to assume we were faking our amnesia and by extension the whole dissociative experience.

When we moved from one psychiatric institution into another in 2013, we no longer felt safe. We actively denied the alters and started to explain ourselves away as bad moods. That’s probably one reason our diagnosis was changed from DID to borderline personality disorder (BPD). My next psychologist, some years later still, went so far as to say we invented our DID because we felt it’d be an interesting diagnosis. Well, no.

We first became aware of ourselves in the summer of 2001, when the body was fifteen. At the time, the host didn’t see the alters as part of herself. In fact, if I reread my diary from back then, it felt as though I was bordering on psychosis. I wasn’t though.

In early 2004, the alters started to appear more and claim their own names. We denied having “multiple personalities”, but only on the grounds that we didn’t lose time. Like I said above, while this could rule out full-fledged DID, it doesn’t necessarily do so (identity amnesia and amnesia for past events also counts), and it still means we’re multiple, ie. diagnosable with OSDD.

Currently, we don’t have a diagnosis of a dissociative disorder. We’re not ready to undergo the assessment process for it, as psychological assessments are a huge trigger for us. However, here we are, all 26 or so of us.

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

My Hopes for 2019

Happy new year everyone! Today and hopefully throughout this month, I’ll be joining in with Just Jot It! January or #JusJoJan for short, organized by Linda G. Hill. Today’s prompt is to reflect back on 2018 or write about your plans or resolutions for 2019. since I already wrote about my 2018, I’m going to use this post to jot down my hopes, goals and plans for 2019. Here goes.

1. Find suitable supported housing. This is my main hope for 2019. Of course, given my experience with finding (or not finding) supported housing out of the mental institution, I don’t have my hopes up too high. However, I at least want to get long-term care funding approved. That way, even if I don’t find a housing place, I can get more support in my current home than I get now.

2. Get back on track with healthier living. I didn’t gain any weight over the holidays and in 2018, lost a pound or 500 grams, while I expected I’d gained. I’m proud of that, but I’m still obese. Knowing that I’ve experienced some time when my BMI was under 30 this past year, I badly want to lose those two or three pounds it takes to be back at just overweight.

More importantly though, I want to embrace a healthier lifestyle. I want to exercise regularly and eat at least somewhat healthfully.

3. Blog regularly. In January, participating in #JusJoJan means I’ll have something to write about each day, as Linda will be posting prompts. I plan on writing regularly throughout the year though.

4. Get a new computer. I have had this on my list of plans ever since 2017. This year, I’m serious about it though, as I finally convinced my husband too that my current PC is outdated. I am seriously considering getting a Mac, as that’d mean I could do without having to get a screen reader separate from the operating system. I already love my iPhone, but I feel I need a computer too.

5. Stay mentally stable. Over 2018, I’ve not had serious crises other than the one in January that eventually got me kickked out of my old day activities place. I’m still considering terminating mental health treatment once I’ve found suited supported housing. After all, I’m pretty confident that the depression I suffered early in 2018 and that required an increase in my antidepressant dose, was caused by my difficulties coping at home and at day activities. I do still experience trauma-related symptoms, but at this point, they’re manageable.

What are your hopes for 2019?

Recovery

Today’s Sunday writing prompt over at Mindlovemisery’s Menagerie is “recovery”. This is such a commonly used word in mental health. “Recovery” is the ultimate goal for any mental health consumer or so it is assumed.

I attended a recovery course while in the mental institution in 2010-2011. It was very interesting. It was made clear that recovery is not the same as cure. You can be recovered and still live with a mental illness. Rather, recovery refers to getting as positive and fulfilling a life as possible. It is commonly used in conjunction with “rehabilitation”. The difference is though that rehabilitation is a treatment approach and is hence centered on the professional relationship, whereas recovery is completely patient-centered.

The recovery course I took was specifically for those residing on one of the long-term wards in the psychiatric hospital. This at first surprised me, since being hospitalized is clearly not having a fulfilling life. Or is it? I mean, if you can’t live independently, can you still consider yourself recovered.

I was at the time not planning on ever living independently. In fact, though I was engaged to my now husband, I was planning on going into a workhome, a long-term living environments for autistic people.

Here, it is important what I wrote above, that recovery is completely patient-centered. This means that, though it is believed that most people would want to live as independently as possible, if you don’t, that’s okay too. You are encouraged to make your own decisions, no matter how ill you are.

I have always been of the opinion that self-determination and self-reliance are not the same and shouldn’t necessarily be connected. I am pretty determined, but I’m not very self-reliant. I think personally that self-determination should be more important. Clearly, my last psychologist at the institution disagreed. She diagnosed me with dependent personality disorder, which according to the DSM is characterized by passiveness and an inability to stand up for oneself. I didn’t meet those criteria, but she felt I was asking for care she felt I didn’t need. She kicked me out of the institution almost with no after care. I survived, but I don’t feel well. Now it’s time to focus on self-determination. To try to reach the goals I set for myself.

Like I said, recovery is completely patient-centered. This is what I strive for. To me, recovery is feeling as well as possible. This means I can still work on recovery while going into long-term care.

Psychiatrist’s Appointment Next Week

Next week, we’ll meet with our psychiatrist to discuss how to proceed in our mental health care. Whether we want to continue at all, and if so, how. We’re very nervous and still haven’t made a definite decision yet.

Our nurse practitioner is still off sick. Until a few days ago, I thought that we didn’t need any mental health care, so we were more or less okay with him having been off for over a month already. I felt that getting assessed for trauma-related conditions, as our psychiatrist had originally wanted, was just stressing us for no reason. Most likely, we wouldn’t be believed so just end up where we’re now, with a BPD diagnosis and required to do DBT. I guess we’d rather keep the status quo than be told we definitely don’t have trauma-related issues.

Then we thought, so what if we keep on merely surviving like we do now? If we don’t get therapy, will our mental health ever get any better? Besides, our psychiatrist had been talking discharge, even though she called it a break. So what if we end up in crisis?

Some of us were also feeling like our psychiatrist wants to get rid of us. Like we’re a pain in her neck. Lots of pain has been coming up and today, we nearly landed in crisis because of it. We called the mental health team, even though we’ve been feeling like we shouldn’t need them. Our former assigned nurse called us back. Thankfully, we had a good talk with her.

She said that not doing DBT or trauma therapy doesn’t mean we’d be discharged altogether. We could also just have an occasional supportive check-in with a nurse. That’s not what our psychiatrist said, but oh well. It also doesn’t mean we’ll never get therapy again, or something. Maybe we could take a break for half a year and see whether we want the assessment an dpossibly therapy then.

A lot of us are feeling all sorts of things. We feel attachment pain, which scares the crap out of some of us and makes some of us feel shameful. After all, our overreliance on mental health was the exact reason we got kicked out of the mental institution last year.

It doesn’t help that our support coordinator has also been off sick for over a week. I hope it’s just the flu. She’s supposed to go to the appt with us next week, but if she’s still sick, of course she won’t come. We did discuss our concerns with our staff at day activities yesterday and they offered to write our questions down for us.

As a side note, we had a very validating experience at day activities. When discussing our issues with mental health care, we mentioned DID (calling it multiple personality). Our staff said she’d seen us switch to a little girl. Wow. I didn’t know anyone could tell unless we use our own names.

Phone Appt With Our Psychiatrist

Like I said last week, we’d have a phone check-in with our psychiatrist on Tuesday. We called the team’s secretary fifteen minutes after the psychiatrist was due to call us. Normally we wouldn’t be so impatient, but we were at day activities and didn’t have our phone with us all the time. The secretary put us through to the psychiatrist.

The phone appt was better than some of us had expected. That was mostly due to the fact that the psychiatrist didn’t berate us for trying to get into supported housing. She didn’t comment on it at all, which confuses us a little.

The psychiatrist talked about her proposal in early October to get us on the waiting list for a trauma/dissociation assessment. This had given us a lot of stress. Some of us want it, because they feel it’ll enable us to get trauma-informed therapy. Most of us are scared though. Some of us don’t even believe we’re dissociative. Some of us do, but don’t think anyone will believe us. In short, most of us would only want the assessment if we knew it’d validate us. That’s unlikely though.

The psychiatrist also talked about our E-mail to our nurse practitioner. We had written to him that we’re unsure whether we want to continue with our DBT skills training, because we fear we’ll need to make ourselves look better than we are. I’m not even sure what whoever wrote that E-mail meant by it, but I know change is scary.

The psychiatrist now proposed to give us a “break” from treatment. This’d mean our GP would handle our medications and we’d basically be discharged from the mental health team. We could still get some sessions with our nurse practitioner to help us create a good crisis prevention plan for our support staff.

Many of us have all sorts of mixed feelings about this. Some feel relief, while others feel fear. Some cling to the wish for a trauma-informed therapist. Particularly the littles wish to be validated. I don’t know though whether that needs to be by a trauma therapist. They have so far felt most validated by our intellectual disability agency staff, after all.

Mental Health Ramble

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.

What I’d Put Into a Self-Care Kit

So I eventually gave up on the #Writ31Days chalenge. I couldn’t cope. It had become too much of a burden. But I still want to write. Today, I am sharing another personal growth-inspired post. I am writing about those things I use to take care of myself. A Dutch blogger posted about using a self-care kit, which is a box with self-care/positive items in it. Here is what I’d put in my self-care kit.

1. My crisis plan. I cannot read print, so I’d have to either type out my plan in Braille, which is too much work, or put a simple reminder on the box lid to read my crisis plan.

2. Stuffed animals. I as well as the inner children love the stuffies! Rainbow/Sofie, the stuffed unicorn we got at our old day activities, is best used for fidgeting. The inner kids prefer our toy sheep. When we’re cold, we prefer the sensory cat, which you can heat in the microwave and then gives off a nice lavender scent.

3. Essential oils and wax melts. I love love love essential oils! I do happen to have some faith in aromatherapy too, even though I know that it’s not scientifically proven. I would still someday like to create my own mmassage products with essential oils, but for now I just diffuse them. I have a box filled with over 20 different oils.

I also love wax melts, althogh my husband often gets a headache from the strong scent. I particularly love fruity and sweet smells.

4. My sensory exercise products. I have an exercise ball, which obviously doesn’t fit into a box, but which I love anyway. My air stepper pad does fit in a box. I’d love to someday get a Flowee spiky mattress too.

5. Soothing music. Nowadays I don’t listen to CDs. I get all my music from Spotify. I have a custom playlist with soothing sounds and peaceful music. I also love a lot of playlists created by Spotify itself.

What would you put into a self-care kit?

My Greatest Dream in Life #Write31Days

Welcome to day five in #Write31Days. So far this month, I’ve used a bunch of prompts from various sources already, each with a different perspective on personal growth. Today, I picked a prompt from one of my older collections of journaling prompts, a book of 100 self-help journal prompts by Francie Brunswick that I have in my Adobe Digital Editions. Adobe Digital Editions is no longer accessible with my outdated version of the JAWS screen reader, but I managed to get it working a little with NVDA, an open-source screen reader.

The prompt is to journal about your greatest dream or the ultimate goal you have in life right now. I do have goals, but if I have to be really honest, my biggest dream is to feel mentally stable and safe.

I have suffered with depression on more than off ever since middle childhood. My parents tell me that, before then, I was a cheerful, laid-back child. I still had social and emotional deficits, but they were manageable. According to my parents, my psychiatric struggles didn’t start until I was around seven. They blame it on my becoming aware of my blindness.

I am in contact with an autism-specialized consultant for getting me proper care. She says that many children with normal or above-average IQ and autism get stuck in school at some point. Usually the first point of actual breakdown is the beginning of secondary school. I remember this point really well. One day, in my first year of secondary school, only one month in, I wrote in my journal that I’d rather earn a high level high school diploma in six years than have to settle for a lower level with more special education support. In the years that followed, I kept hearing this inner voice: “YOu don’t want to go back to special ed, do you?”

The next point of breakdown usually happens in college. I finished one year of college only with a lot of support. Then I broke down at university. I never fully recovered.

Over the next eleven years, I resided in general mental health facilities until being kicked out for allegedly being dependent. People had control over my life all this while and I never felt safe. Now I’m away from the controlling professionals and my parents, living with my husband, but I still feel extremely unsafe.

I was originally going to write down my goal more specifically. I was going to write that my biggest dream right now is to get into long-term care. That sounds extremely off though. I’m still not free from the interalized stigma surrounding long-term care. Still, I think I should be too “high-functioning” for it. I’m scared that, if we apply for long-term care funding, the decision-maker will read this blog and say that someone who can write a blog, should not need 24-hour care. That’s a terrible misconception that could cost people their lives. And yes, that includes me.

Struggle #WotW

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence