Working On Us Prompt: Depression

Oh my, I seriously haven’t blogged in nearly a week! It’s not that I have nothing to share. In fact, a lot has happened this past week. However, I’m struggling to put these experiences down into words on the page. I feel terribly uninspired and also held back by my own inner critic. You know, the voice that says posts have to be “blog-worthy” to publish. I remember I originally intended this blog for me to let go of this idea. Not so, apparently.

Today, I’m joining in with Rebecca’s Working On Us Prompt. This week, it is all about depression.

The first question is to share what type of depression you suffer from. Well, it seems simple and yet it’s complicated. When I had my original mental breakdown in 2007, I was assessed for depression, but the psychiatrist couldn’t diagnose me with it. I just about didn’t tick enough boxes, probably because I didn’t understand half the questions. I was most definitely depressed, but acted it out as agitation. My diagnosis was adjustment disorder.

Fast forward nine years. I had lost my autism diagnosis, which had been replaced by dependent personality disorder (DPD). Because just an axis II diagnosis didn’t qualify you for this inpatient unit, my psychologist gave me an additional diagnosis of depressive disorder NOS. Yes, I kid you not: she seriously gave me an additional diagnosis so that I could stay on the psych ward for a bit. One of the nurses said she did me a favor, because in fact, the whole DPD diagnosis saga was meant to eventually kick me out of there.

I sought to get my autism diagnosis back through an independent second opinion. For the initial assessment, I was given a ton of questionnaires I had to fill out online. Among them was of course the autism spectrum quotient questionnaire, some ADHD screening tools but also a depression inventory. I filled it out as honestly as I could. It seemed as though the questionnaire had been designed for me! I scored as having severe depression. Eventually, I was diagnosed with moderate recurrent major depression. I also got my autism diagnosis back and DPD was removed.

Rebecca’s second question is about treatments. I have been on the SSRI antidepressant Celexa ever since 2010, so years before my depression diagnosis. I hardly knew why I took it and had no idea whether it was helping. This is until I noticed my mood dropping significantly in late 2017. I waited for six months for it to pass – because I didn’t want to misuse care – and then consulted my psychiatrist. She increased my Celexa dose. It has been a godsend. Without it, I’m pretty sure I’d still be very depressed.

When This Is All Over: A Letter From My Future Self

I am feeling rather low right now. I am in fact struggling somewhat with suicidal thoughts. To motivate myself to keep going, I’m writing a letter as if it were say 2021 (because in 2021, everything will be okay) and I am writing to myself right now. In other words, I am writing a letter from my future self to my current self. Of course, in this letter, I’m assuming that by 2021, I’ll be in long-term care. I really hope and pray I’ll be in long-term care much sooner, but I know that at least they won’t be able to deny me funding by 2021.

Dear you,

I see you. I feel your pain. I understand 2021 seems like far away and I know you hope to be granted long-term care funding earlier. I know you need it. I know you’re struggling right now, seeing that your application is likely to be turned down. I know your support staff are fighting like lions to get you funding. Please appreciate that.

Please don’t end your life now. Things will get better. I am here, in a suitable supported housing facility, looking at you. Look at me and please give me a chance. I don’t want to be dead.

Please, for the sake of me, keep going. You’ve been through so much already. I know that isn’t particularly motivating to keep going, as each disappointment drags you further down the rabbit hole of depression. However, I am here to guide you through.

Please, for your husband, keep going. He loves you. He supported you through the twelve years up to this point and he’ll support you through the rest of the time needed to finish this thing.

Please, for your parents, keep going. They may see you as manipulative. They may have felt in 2007 that the main reason not to kill yourself is that they’d have to pay for your funeral. They no longer do, but they don’t deserve to be proven right about the manipulativeness. Please keep on fighting and show them you can be a happy, positive person.

Please, for your support staff, keep going. You have the best support coordinator you could wish for. She fights like a lioness for what you need. She believes you. Please don’t let her down.

I know you want to be included on the Autistic Memorial Blog if your suicide is successful. Fine by me but I’d rather you be a living person rather than a statistic on a blog. I know you say that your suicide might wake up the politicians and policy-makers involved in healthcare, but they’re already working on changing the law. They can’t speed up things just because you’re gone.

And what if you attempt suicide but fail? Then you’ll be exactly where you are now, except that you’ll be there to remember your parents being proven right about your manipulativeness. Because quite frankly, killing yourself for political reasons is manipulative. I know that, if you ultimately decide to attempt suicide, you’ll not be thinking about this, as you’ll most likely act in an impulse. However, I am here on your blog to remind you that, as shit as this may be, suicidality won’t get you what you want, or even what you need. Look back at yourself in 2007 for that. You might get temporary relief from the current situation, but it won’t last and you won’t be relieved from yourself, except if you truly die. Which I know isn’t what you want or need either. Please, stay safe.

Me

Depression: What It Feels Like #AtoZChallenge

Welcome to day four in the #AtoZChallenge. Today I am once again struggling to find the motivation to write. I also didn’t think up a topic for today until just now. Today’s topic is depression. Most people will have some basic knowledge of it, so this isn’t going to be a primarily informative post. Rather, I am sharing what depression feels like to me.

From age seven or eight on, I experienced depression. However, in my case, its main manifestation wasn’t sadness. I wasn’t crying all day. In fact, I rarely cry unless I’ve had a meltdown. Rather, my main manifestation was irritability. This is common in children and adolescents.

However, because my most obvious mental health symptom continued to be irritability into adulthood, I wasn’t diagnosed with depression until age 30. I had some assessments for it when in my twenties, but always checked off just a little too few boxes.

When I got diagnosed with depression in 2017, I first had a screening tool administered. This tool covered some of the more atypical symptoms of depression, such as feeling like a weight is on your body, gastrointestinal symptoms, etc.

Depression to me feels like a constant heaviness on my body. I can literally feel it weighing down on my shoulders.

Another important aspect of depression is feeling low. When I was first assessed for depression in 2007, I didn’t know what the feeling of depression meant, so the psychiatrist clarified it by asking if I’m sad. The thing is though, sadness and depression are very different. Though some people with depression cry all day, most don’t feel particularly sad. It also isn’t a situational thing, as sadness often is.

Another thing about depression is that most sufferers have trouble sleeping, eating and maintaining weight, resulting in weight loss. However, in my case, I sleep too much, eat too much and gain weight.

Suicidal thoughts are also a part of depression, but most severely depressed people are too lethargic to actually be actively suicidal. When I have vivid thoughts of ending my life, I can tell it’s usually more situational and due to emotion regulaiton issues. When I’m “just” depressed, the thought of ending my life is a constant lingering presence at the back of my mind.

Lastly, a common symptom of depression is psychomotor agitation or retardation. This means people get slower or conversely more restless. I tend to experience a mixture of both, but usually when I’m purely depressed, slowness is the overriding symptom.

Gratitude List (March 23, 2019) #TToT

This week was better than last week. Still, when I filled out a check-in questionnaire on an app called Pacifica, it said I scored as severely depressed. Well, apparently that’s my normal state.

Today, I am feeling pretty good. I want to share the things I’m grateful for, so I’m once again joining in with #TToT.

1. A full Monday at day activities. Like I mentioned last week, from this week on, I’ll be going to day activities three full days (Monday, Tuesday and Friday) plus Wednesday morning. I liked it on Monday afternoon.

2. Lorazepam. On Tuesday, I was pretty unquiet all day. Thankfully, I’d taken my PRN tranquilizer with me to day activities. I took it in the afternoon. At first, it just made me feel drowsy, but I eventually calmed down too.

3. Stuffed animals. I spent some time Tuesday afternoon at another group at day activities, where I tried to relax in a recliner. They have a large stuffed dog, which I was allowed to hold.

Also, last Thursday before leaving for work at 5AM, my husband covered me in stuffed animals as I went back to sleep. That’s so awesome!

4. Two long walks with my support coordinator. On both Wednesday and Thursday, we took an hour-long walk.

5. Yoga. On Thursday, I tried to do some yoga on my bed, because I couldn’t find my yoga mat. Turned out it had disintegrated and my husband had thrown it out. I ordered a new yoga mat on Thursday, which arrived at my in-laws on Friday. I picked it up today and it is great. It is not as thick as the one I used to have, but thick enough at 1.5cm. I tried some yoga again today.

6. Mindfulness apps. I tried meditating regularly using Insight Timer this week. It was good. I also, like I said, got an app called Pacifica, which helps me track my mood and health habits. I like it.

7. Beautiful weather yesterday. The temperature reached 19 degrees Celsius, which meant we could have coffee outside in the afternoon at day activities. The staff also put up the cocoon swing, which I always love.

8. Sleep. Yesterday, I was feeling exhausted and had a headache. My husband noticed an dtold me to go to bed. I slept for over twelve hours last night. Though my quality of sleep could be better, since I snore awfully, I feel okay now energy-wise.

What are you grateful for?

Celexa #SoCS

Today’s prompt for #SoCS is “cele”. Choose a word that starts with it and go from there. I initially chose “celebrate”, but I got stuck before I even introduced my topic. Then it hit me, I’d have to choose another word: Celexa. I bet this isn’t as common a choice as “celebrate”, which I’ve seen with at least one other blogger.

Celexa is the antidepressant I’ve taken for over eight years and counting. Its generic name is citalopram. It is a selective serotonin reuptake inhibitor (SSRI), the most commonly used type of antidepressant. It is known to help with both depression and some with obsessive and compulsive behaviors. Not that I have those a lot, but I do suffer with depression quite a bit.

That being said, I hadn’t even been diagnosed with depression when I was first put on this medication. It was used as an adjuvant to my antipsychotic, Abilify, when two increases in the dose didn’t calm my anxiety-induced irritability.

Years later, I was diagnosed with depression. This gave me the courage to finally ask for a dose increas of my Celexa. I had already had five dose increases in my Abilify and was at the highest dose, but no-one bothered to look beyond my irritability anymore. In fact, I am not sure the psychiatrist who initially put me on Celexa did.

In May of 2018, I got put on my current dose of 40mg. This is so far working quite well. I mean, even with the bad news I received this past week – and trust me, it was very bad, distressing news -, I am not falling into the pit of depression. I’m pretty sure that without my high dose of Celexa, I’d have spiraled out of control. And I don’t need that happening if I want the situation, which the bad news was about, to work out.

Developing My Fighting Spirit

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

Gratitude List (October 26, 2018) #TToT

Man, I really am falling into a writing rut. I don’t even know why. I’m still not feeling too well, but I wouldn’t say I’m seriously depressed either. For a bit in early October, I did feel extremely low, bu I picked up the pieces again reasonalby soon.

Today, to get myself motivated for writing again, I’m participating once again in #TToT. It’s not a weekly gratitude list anymore and I may be sharing some things I’ve been grateful for over the past few weeks.

1. A skirt-wearing day in October! This was already a few weeks ago, but I’m still so thankful for it. About two weeks ago, the temperature rose to 26 degrees Celsius and I loved it!

Generally speaking, the weather has been extremely mild here with hardly any rain. We got some rain only over the last few days and that wasn’t a lot. Today is one of the first days it’s really rather cold.

2. Sleep. Like I said above, fall weather came late this year but it well and truly came. I am very sensitive to cold, so I’ve been complaining for a few days that it’s cold already. This means that nothng’s cozier than crawling under the covers against my husband or with my sensory cat. The sensory cat is a soft toy that can be put in the microwave and then gives off heat and a lavender scent.

3. Swimming. At day activities, we go swimming every other Tuesday. Two weeks ago, I was a bit sick, so didn’t go. This week I did though. It was lovely. My Fitbit activity tracker says I swam 1200m total, which I can’t believe but oh well.

4. A full day at day activities. Three weeks ago, I got permission to come to day activities one full day a week in addition to the three other mornings. I now go on Tuesdays for a full day and Mondays, Wednesdays and Fridays in the morning. I am still settling in a bit but so far I love it.

5. Making smoothies. I really, really need to get into a healthier eating habit again. I haven’t been on the scale in months and I’ve probably gained lots of weight. To get myself motivated, I bought a lot of frozen fruit and a can of soy milk last Monday. Bananas were sold out, so my husband bought those on Tuesday. Yesterday, we made a banana-strawberry-soy milk smoothe and it was delicious!

6. Horseback riding again. Some of my fellow clients at day activities go horseback riding at my riding school on Friday afternoons. I go on Friday afternoons too, but usally the class after theirs. Today, one of these other clients was on vacation, so my staff offered to ask whether I could come in her place and I could. My assigned support worker from day activities walked beside my horse. It was a lot of fun!

7. My very accommodating staff. My support coordinator and home support worker are going out of their way to help me. So are my day activities staff. Particularly, they offered me to come to day activities two full days on December 27 and 28, since the other days of that week, the center is closed for Christmas. They’ll have room for me even on that Thursday, which is normally my day off. I’m so grateful for this!

8. Accessible games on the iPhone. I never took much of an interest in accessible computer games, because I believed most would be very boring. Now this week I decided to take a look at the AppleVis directory of iOS apps in the Games category. Of course, most games that are really popular with sighted people, are totally inaccessible. However, some accessible games are pretty cool after all. I so far downloaded Dice World, which is a collection of six dice games, and Alter Ego.

Alter Ego was originally created as a fully text-based game in 1986 but was adapted for use on the smartphone. It is a game in which the scenario is that you’re born and will eventually die. The life you lead in between will depend on your answers to a lot of multiple-choice questions. On my first round playing, I chose to be a very angry, rebellious baby and ended up with burns from an iron in infancy and killed by a kidnapper in childhood.

9. Twister fries! I have no idea whether twister fries exist in other parts of the world and, if so, whether they’re really called twister fries. They are my favorite type of fries, but they had apparently been taken off the menu at my local cafeteria. Last week at his once-a-week round to the cafeteria, my husband informed me that he had a nice surprise for me and it turned out they were back. I enjoyed them both last week and this week. I also love love love the African-style burger they have on the menu.

10. My mood being slightly better. Like I said, I had a really low few days earlier this month. Over the past two weeks or so, my mood seems to have been slowly but steadily improving. I cannot say I feel good, but I don’t feel that bad either.

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.

Seven Things I Wish My Unsupportive Parents Understood About Me

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.

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