House Inspection

One of Mama Kat’s writing prompts for this week is to tell us about a time someone showed up at your front door. Since I no longer live in regular housing since moving into the care facility, no-one ever shows up at my front door unexpectedly and, if they do, the staff will open it for me. When I still lived with my husband though, several times, people would show up at my front door unexpectedly. Not salespeople, thankfully. However, my experiences with the housing corporation were so bad that my husband actually asked me not to open the door. I always reflexively did anyway.

One time, the housing corporation, or I’m assuming some technical company sent by them, showed up when I did expect them. They were supposed to be repairing our gutter, but asked a ton of questions about where the problem was located and what kind of gutter we had. I had no idea and the people said they couldn’t just climb onto the roof and have a look. I called my husband to inquire, but he didn’t answer the phone, so they left without having done anything. This encounter led me to get into a mental crisis.

The first time the housing corporation showed up unannounced was in early August of 2017, just two weeks after the gutter repair guys had showed up. They came to ask us to weed the path behind our backyard. I had no idea there even grew plants there, but, under pressure, agreed to ask my husband to do it within a couple of weeks. Apparently, the back neighbors had been complaining, since I don’t expect the housing corporation to come out from the town to check on our tiny village house for no reason.

The other time was in September of 2019. My husband had scheduled the final inspection of our home for the 26th, when I’d be at the care facility and he’d be home alone. However, they showed up a week early when I was home alone. I was sleeping when I heard the doorbell and felt I had no time to dress into my day clothes, so quickly ran downstairs to open the door.

I told them they were a week early, but they insisted they take a look around “now that we’re here anyway”. After their inspection, they asked me to sign a document. I initially refused, but they insisted I am a renter too (I was). Then they asked: “Can you read?” I explained that I can, but not print, since I am blind. “There’s nothing to worry about in this document,” they told me. In my overwhelm, I signed and sent them on their way. My husband did complain about the way they’d treated me this time and it was my final reminder of why I want to never live in regular housing again.

Mama’s Losin’ It

Desperate Yet Determined #WotW

Hi everyone. What a week it’s been. I’ve been swinging between despair and determination, sometimes experiencing both at the same time. Let me share.

Last week, I was in a very depressive, dysregulated, suicidal state. I finally managed to tell my assigned home staff about the nature of the “monster” in me, ie. my suicidal thoughts. She decided to E-mail the current behavior specialist assigned to my care home asking her for help in finding me someone to talk to about this. I mean, I have my nurse practitioner at mental health, but I cannot seem to get it through to him how I’m truly feeling.

I also E-mailed my nurse practitioner, only to get a response saying we’ll talk about it on the 23rd. Well, that was the final straw for me and I’ve pretty much decided I’ve had it with treatment with him. I mean, I know I should have called the team, but it’s not like this is the first time he doesn’t pick up on my signals, be it in E-mails, on the phone or even face-to-face. Our talks have pretty much been meaningless forever. Honestly, the only thing he’s helped me with is getting the right medication, the topiramate, for my nightmares.

This week, I’ve been swung back and forth between the thought that truly there is no hope for me and the thought that, maybe, if I stand my ground firmly enough, I will be able to access the right help somewhere.

I’ve also been ruminating over those two years I’ve been in treatment with my current mental health team. My nurse practitioner told me a year ago that “we could search half the country for a suitable therapist but that wouldn’t make sense”, adding that we’re stuck with each other (as if it was something he hadn’t just decided on himself). Half a year earlier, he wanted to refer me to the specialist autism center, but that got shoved off the table for a reason I was never told. I have been saying for all of the two years that I’ve been in treatment with this team that there are two things I want to work on: my trauma-related symptoms and seeing if I can lower my antipsychotic. Neither has even remotely been started yet. After two years, I’m done.

I am not so naive to think my nurse practitioner is actually going to give in and actually help me find someone else this time around. I have a tiny bit of hope focused on the behavior specialist for my care home, but not much. Even so, I’m pretty sure I can get by with no help from any mental health professionals at all. It won’t be easy on me or my staff, and that’s one reason my staff might pressure me to stick with mental health. Thankfully, so far they don’t.

On the physical health front, I’ve also been swung back and forth between despair and determination. After thinking kind of wishfully that my abdominal discomfort was almost gone last week, it returned on Saturday and has been pretty bad all of this week. Nonetheless, my GP wants me to stick to my current regimen of one magnesium tablet (laxative) per day for two more weeks and have the staff call back to evaluate then. I was pretty upset yesterday when I heard this. Now I’m more resigned to the idea that there’s no hope for improvement of my symptoms.

Overall, right now, despair is taking over, but thankfully I’m not actively suicidal right now. There must be some tiny flame of determination in me somewhere.

How was your week?

Word of the Week linky

Not the End

My mind is exploding with chaos. So many thoughts, feelings, wishes, voices, dreams and visions float through it. It is so overloaded I am tempted to give up. Through the chaos, I can hear the monster speak. “Give in,” it lures, “go to the clouds.” I can almost picture the heavenly realm, the place the monster is trying to get me to go to, in my mind’s eye. I cry out: “No!” I am bombarded yet I stand. I won’t give up. This is not the end.


This piece was written for yesterday’s Prosery. The idea of this challenge is to use a given line of poetry in a piece of prose. The line we were asked to use is: “I am bombarded yet I stand.”

In the above piece, I try to capture what it is like to be overloaded with depressive and suicidal thoughts. Yet, I also aim to make it clear that I am fighting back. After all, this is not the end.

#WeekendCoffeeShare (October 17, 2021)

Hi everyone. I’m rather late joining #WeekendCoffeeShare this week and I’m afraid there’s no coffee left. You can help yourself to a soft drink or a glass of water though. I also have chips in my cupboard. After yesterday’s crying fit over there only being the wrong flavor left, I decided to buy some myself. I did ask the staff to put them into a cupboard which they only have the keys to, but I’m pretty sure they’ll love to open it for you. Let’s have a drink and a handful of chips and let’s catch up.

If we were having coffee (or a soft drink and chips), I’d share that this week is still quite meh. Early in the week, I was feeling a little more optimistic at the prospect of starting my increased dosage of topiramate soon. I started it on Friday and so far, unfortunately, no change. I am grateful though for no side effects either.

Over the weekend, I’ve really been struggling. I landed in a bit of a crisis earlier this evening, but thankfully pulled myself out of it. I did E-mail my nurse practitioner and CPN at mental health to let them know I’m worried about deteriorating. My husband said I’m not, but the fact that I keep increasing my meds, tells me otherwise

If we were having coffee, I’d moan about my orthopedic footwear after all. The shoes squeak and, though I’m still not in terrible pain, I cannot walk for more than twenty minutes on them without them feeling horribly uncomfortable. Mostly my left foot, the foot on which I wear the AFO, starts to drag. I haven’t heard back from the physical therapist, but am pretty sure she’ll just say I need to push through.

If we were having coffee, I would show you all the soap I made for my assigned staff, the one who’s on sick leave. I heard last Thursday that she’ll remain off work until the middle of November or so due to among other things her needing to use up all her days off for the year or they’ll disappear.

Like I said yesterday, the soap contains vetiver, lavandin and clary sage essential oils. I decided to use a white soap base and no colorants, because I felt the scents would speak for themselves.

If we were having coffee, lastly I would share that my husband came by today. We drove to Subway for lunch. I dutifully wanted to get out my CoronaCheck app, but my husband told me to wait. As he expected, they didn’t ask us for it. The taco beef wrap I chose, was rather boring and I’m pretty sure the mince they put in it was vegetarian rather than beef. Oh well, now at least I know what not to choose next time.

How have you been?

Ways of Finding Inner Peace #31Days2021 #Blogtober21

Yay, another post today in honor of #31Days2021 and #Blogtober21! The optional day 3 prompt in the 31-day writing challenge is “Peace”. I have been very much on edge over the past couple of days, so I really could be using a sense of inner peace right now. I am not too inspired to write, especially about finding peace. To get some ideas, I reread my list of activities that give me inner peace, which I wrote about three years ago.

The activities could be divided into several categories. Some are spiritual in nature, such as meditation. I wasn’t a Christian at the time, so I’d put prayer and Bible reading in this place now.

Others are physical, such as walking or exercise. I honestly didn’t think of exercise as an activity to give me inner peace right now.

Then there are the sensory activities. I have a lot more of those available to me right now than I had back in 2018. For example, now that I have a music pillow, I can not just listen to soothing music with headphones on or through speakers in my room, but through speakers integrated into my pillow. In addition, I obviously have my essential oil diffuser and my weighted blanket now, as well as still having my sensory cat soft toy and several other stuffed animals. I can almost create a sensory room in my own bedroom.

Writing is an activity that still helps me. So does talking to my staff. When I struggle with worries, writing them out just for myself, will not usually be enough, but sending an E-mail to my staff is.

Lastly, there are of course mental strategies for dealing with distress, such as radical acceptance, opposite-acting or “worry time”. Unfortunately, I haven’t found many cognitive approaches to finding inner peace helpful at all.

What strategies or activities help you find inner peace?

Mid-Year Reflections

Hi all. How can it be the middle of July already? It’s amazing how time flies. This week, one of Mama Kat’s Writer’s Workshop writing prompts is to look back at your new year’s resolutions for 2021. As I do each year, this year I called them hopes rather than resolutions as a way of lessening the pressure. As I look back though, I seem to be doing pretty well.

My first hope was to eat a somewhat healthier diet. Indeed, I am making sure to eat enough fruit and veg each day, unlike apparently during the last few months of 2020. I however still struggle to make healthier breakfast and lunch choices.

In the exercise department, I’ve not been as inventive as I’d hoped. I blame COVID, as, even though gyms reopened to the public a while back, I haven’t felt comfortable to go.

With respect to getting stable mentally, this is a work in progress. I’ve only actually noticed some seemingly significant improvement over the past month or so, after first falling deep into crisis in mid-June. I cannot say for sure the one-on-one support is helping me get mentally stable, but I do know for sure that I certainly don’t want to go back to the situation before the extra care hours were approved.

Faith-wise, I am still on my journey with God. I pray everyday, read the Bible everyday and am learning to put Jesus first. I am however still struggling. I really want to get baptized, but have no idea where to start, as I don’t currently even go to a physical church. More importantly though, I am still regularly tempted to think that, since God is in charge, I shouldn’t even bother with wanting to be saved.

On the leisurely side of things, I’m doing pretty amazing if I can say so myself. I have kept up a pretty good blogging routine and actually love jewelry-making and bath and body product making again. I am glad I didn’t resolve to be able to do these activities independently, as that’d be an unrealistic goal.

The only area I’m not that satisfied with myself about, is my reading. I did a separate post on bookish resolutions for 2021. I guess I should have called those hopes too, as to be honest, I haven’t really met a single of my goals as of yet.

How did you do on your new year’s resolutions so far?

Mama’s Losin’ It

Nurse Practitioner’s Appt This Afternoon

I had a brief meeting with my nurse practitioner this afternoon. Even though it was only half an hour, we discussed a lot of things. First we made concrete plans for me to start the topiramate. Like I said before, I would need to be on the injectible birth control for two weeks before I could start it. That would be next Thursday, but I proposed I won’t start with the topiramate until the Sunday after that, July 4. That way, I won’t be just starting out when I go to Lobith on July 3. This was okay with my nurse practitioner and he’d make sure the pharmacy would get it ready on time.

Next, we discussed my bloodwork results. In the part that measures metabolic health, nothing worrisome was found. I asked about my kidney function and first my nurse practitioner said that unless your estimated GFR is below 60, it’s no reason to worry yet. Mine was 81. He checked my previous lab results. My estimated GFR was 71 in 2019 and 82 in 2020, so there’s not a clear decrease either.

He also complimented me on my cholesterol level, which was completely normal. Of course, there is only so much you can do about high cholesterol, but apparently I’m doing what I need to. It probably helps that I don’t drink and try to eat a relatively healthy diet.

Then the other page showed my blood level for my antipsychotic aripiprazole and its active metabolite. These were quite high. This means that side effects may outweigh the effectivness of the medication. While I don’t experience any major side effects, we will try to lower my aripiprazole dose in the not-too-distant future. That’s been a long-time wish for me anyway.

Then we got to discuss my crisis last week and my conversations with my husband. My husband had suggested I might have dependent personality disorder and I eventually thought he was right. Of course, in my mind, this led to all kinds of additional conclusions that my husband hadn’t mentioned, like my not having trauma-related issues and my not even being autistic and my being one giant manipulator.

My nurse practitioner said that DPD rarely if ever goes alone and that he wonders whether it even is a valid diagnosis. It is according to DSM-5, of course. He added that this is one of the most negative diagnoses to give someone. My nurse practitioner obviously didn’t mean my husband, as he didn’t really try to diagnose me at all, just wanted to give me food for thought. We will further discuss my issues with dependency in the future.

Overall, it was a good appt. As my nurse practitioner hadn’t read the E-mails we (meaning my inner people) had sent him over the weekend, we didn’t go into those specifically. Those E-mails had included a lot of self-loathing and self-doubt, including about our possible DID. I did explain about the dependency issue, like I said above. He also made sure I’m no longer in actual crisis. I confirmed this. This means I no longer need more frequent contact with the mental health team than I normally have.

My Top Ten Favorite Inspirational Memoirs

Hi everyone! Today I’m joining in with Top Ten Tuesday (#TTT), a weekly book-related meme. Since I don’t read nearly as much as I would want to or as book bloggers do, I don’t participate in this meme that often. I love it though! Today its topic is a freebie, so I get to pick one. And you know, I’ve always wanted to share about my top favorite inspirational memoirs. Here goes, not in any particular order.

1. The Hospital by Barbara O’Hare. This is a truly gripping memoir by a woman who survived secret experimentation and sexual abuse in a children’s psychiatric hospital. I read it back in 2018 and still love love love it.

2. Who Will Love Me Now? by Maggie Hartley. This is my favorite foster care memoir by this author. I reviewed it last year.

3. Where Has Mummy Gone? by Cathy Glass. This is another foster care memoir. It is my absolute favorite Cathy Glass memoir, but I love many others. See my review.

4. Today I’m Alice by Alice Jamieson. This is a memoir of a woman with dissociative identity disorder. Since I have this condition too, I wanted to share at least one memoir by someone wiht DID and this is the most recently-published one I’ve read. It was still published back in 2010, but I think it’s still available.

5. Let Me Go by Casey Watson. Yet another foster care memoir. Can you tell I love this genre? I was almost going to make this list all about those. Let Me Go came out last year and I reviewed it back in October.

6. No Way Out by Kate Elysia. This is a truly gripping story. It deals with sex trafficking of young women in the UK. I was going to review this one last year too, but didn’t get down to it.

7. Finding Stevie by Cathy Glass. Yes, another Glass book. This one deals with a genderfluid teen who is being exploited online. I really liked it. See my review.

8. A Road Back from Schizophrenia by Arnhild Lauveng. I had to google its English title, as I read it in Dutch. I am not sure it’s still even available, but it was definitely a great read.

9. Born on a Blue Day by Daniel Tammet. This is another older book which I read in its Dutch translation before I had access to Bookshare or eBooks. This is a memoir by an autistic person.

10. A Real Person by Gunilla Gerland. Okay, I’m getting annoying with my older books that I didn’t even read in English. Sorry. This was one of the first memoirs by an autistic person I read after being diagnosed myself.

Do you like memoirs? Any recommendations?

Powerful

My Braille display, which I use to access my computer and smartphone as I am blind, is giving me problems again. In fact, it’s been acting up ever since only a few days after it got fixed three weeks ago, but I hadn’t wanted to disclose this on my blog. After all, the Braille display costs several thousands of euros and the company had originally claimed that home contents insurance (which I don’t have at this point) should pay for the repair, so I had been wanting to keep this private while investigating my options. Now though, the thing has been acting up so badly that it caused me to spiral into a parasuicidal crisis. This may seem odd, technology being so powerful as to get me to lose my sanity. Thankfully, my husband calmed me down!


This post was written for Six Sentence Story Thursday, for which the prompt today was “Powerful”. It was also inspired by Abbie’s contribution to the blog hop.

An Unbelievably Good Psychiatrist’s Appt Yesterday

Yesterday, I didn’t blog, because I was overwhelmed and frustrated all evening. The frustration is a topic for another time. My overwhelm was mostly positive in a way, in that I’d had a psychiatrist’s appointment in the morning and was overcome with disbelief at how understanding she was. That in turn triggered feelings of disbelief at my current life situation in general, which triggered memories of trauma.

I’d seen this psychiatrist once before, last December. Then, she had switched my PRN medication from lorazepam to quetiapine. Now was the time to discuss whether this was the right medication for me. I wasn’t sure to begin with. I explained truthfully that, while the medication helps somewhat with my oversensitivity to stimuli like noise, it doesn’t help with the anxiety and PTSD symptoms. I didn’t mention PTSD as such, but I did mention that my basic level of arousal is already pretty high. She asked me to describe how I moved from my baseline, which I explained was already a five on a 1-10 scale, to a level ten. I explained that I move very quickly and, once I’m at a ten, I’m too overwhelmed and unable to process stuff to take a quetiapine. Then, when I recover slightly to, say, a level eight, I can take the medication and it helps me get back to my baseline level of five.

I can’t remember how we got talking about it, but I assume my nurse practitioner already told her some things about my anxiety. I mean, we got talking about my fear of going to sleep, which I up to that point had hardly realized was maybe an actual fear of going to sleep because of nightmares. Until this point, I’d always assumed it was some form of fear of abandonment, as the night staff isn’t in my home all the time.

The psychiatrist pretty quickly got to her suggestion, which is adding a low dose of topiramate (Topamax) to my daily medications. I had heard of this medication before and a person I know online, had gotten it at his own request to help with PTSD-related nightmares. This person got it only for a few nights when he had to endure a triggering situation though. Besides, I don’t have nightmares every night. So before I agreed to it, I asked the psychiatrist to explain what it would do. She said it’s normally prescribed for epilepsy or migraine, but low doses are also found to be effective for trauma-related symptoms. She explained that some people love this medication and some hate it due to its side effects. At first, I’ll get one 25mg tablet to be taken at night. I’ll notice any side effects I’m going to get within the first several days and can then stop right away if they’re too unpleasant. If I tolerate this medication, the dose can be upped, in which case I’ll need to take the medication twice daily. The highest dose she usually goes to for PTSD is 150mg a day. She said that it should help with nightmares, but also could be helpful in preventing me getting triggered and having flashbacks often during the day.

I loved how understanding she was of my symptoms. I can’t even remember having said that I experience flashbacks, but I quite often do indeed. She said that, though I can continue to take my PRN quetiapine, that one dulls me a bit, while the topiramate should actually make me less susceptible to flashbacks. It reminds me of an explanation of the different effects of antipsychotics vs. anticonvulsants in helping with sensory overreactivity that I once read. It said something like, imagine overload is hearing a hated radio channel at top volume in your head. Both antipsychotics and anticonvulsants change the channel, but while antipsychotics give you headphones, anticonvulsants actually lower the volume of the radio. Of course, I will continue to take my daily antipsychotic (aripiprazole) and antidepressant (citalopram).

A possibly not-so-undesirable side effect of topiramate is decreased appetite. Other than that, side effects include drowsiness, sleepiness, double vision and tingling in the hands or feet. That last one, particularly if it’s going to effect my fingers, sounds annoying, but I’ll get to experience that if it happens.

Since my nurse practitioner will have to talk to my care facility’s physician before the medication can actually be started, I don’t expect this to happen till sometime next week. It’s also been decided I will start this when a trusted staff is on shift.

Now this did get me into an excited yet overloaded state yesterday evening. I mean, seriously, how can it be that someone truly understands? It baffles me but I’m so relieved.