Dancing Through Darkness #WotW

Okay, I’m supposed to be in bed already, but I can’t sleep. What better thing there is to do than write a blog post, right? I’m joining in with Anne’s Word of the Week for the first time in forever. The idea is to sum up your week in a word or phrase.

This week wasn’t the best mental health-wise. Yesterday, I landed in a full-on crisis. I didn’t express my dark thoughts right then, but I did to my staff this evening. It isn’t the first time I’ve experienced acute suicidality, but the intrusive thoughts and images I get then shock me everytime. Thankfully, I was able to calm down after taking a PRN lorazepam. I will be calling my nurse practitioner at mental health tomorrow, since my community psychiatric nurse is on vacation. I know I’m not clinically depressed (yet), but I do want my treatment team to know about my crisis.

The rest of the week I pretty much saw it coming. On Monday and Tuesday, I was still pretty much in my normal mood. Not euphoric, but not depressed either. In fact, I signed up for the Bout of Books readathon on Tuesday fully intending to spend the better part of the week reading or talking about books. I didn’t. The first day, I got through 23% of Five Feet Apart by Rachael Lippincott. I abandoned the book for the rest of the week though.

Particularly Friday, Saturday and today were hard. I did try to remain active. Like I mentioned several times already this past week, I tried to dance. Today I actually sort of succeeded. I also managed slightly more steps and active minutes as recorded by my Fitbit this week than the week before.

I have been trying to be more mindful of myself this week too. By this I mean I’ve started up meditating again. I use Insight Timer, which has like thousands of free meditations. If meditating becomes a regular habit, and I sure hope it does, I may pay for the premium plan. Honestly, though I was still close to crisis today, the affirmation in one of the meditations I’ve been listening to, helped me.

I also started exploring some ways of getting my eating and ultimately my weight under control. This is where dancing comes in handy again.

To sum it all up, I’m choosing “Dancing Through Darkness” as my phrase for the week. I feel depressed, but I’m also trying to actively do something about it.

How was your week?

Word of the Week linky

Gratitude List (May 16, 2020) #TToT

Goodnight everyone. It’s past 11PM here and I can’t sleep. I’m feeling rather hopeless. To cheer myself up, I’m joining in with Ten Things of Thankful. It feels like forever since I last did a gratitude list, even though I did one two weeks ago. Anyway, here goes.

1. Spotify playlists. I already mentioned the Cardio playlist on Thursday. Today, I discovered the Harp Music for Sleep playlist. It wasn’t created by Spotify staff, but whoever created it is awesome! I just tried falling asleep to it. That didn’t work yet, but it definitely helped me relax.

2. Lorazepam. As we speak, I’m recovering from a rather bad crisis. After an hour-long crying fit, I finally asked the staff to give me a PRN lorazepam and it helps at least a little.

3. Dancing. I mentioned this already on Thursday. Today I was in a rather low place and felt like lying in bed all day. I did manage to fit some dancing in though.

4. Pretty good food this past week. I had boiled potatoes only once and the pasta with tuna sauce I had today was truly delicious.

5. Whipped cream custard. To top it off, we had whipped cream custard for dessert today.

6. Insight Timer. Like I said earlier today, I plan on making meditation part of my daily routine. I listened to a body love meditation this evening. The instructor’s voice was a little off to me, but it was a great meditation.

7. A lovely card. Last Thursday, I got another card from the friend who lives in another home in our care facility. She had previously given me an Easter card. Now the card had written in it that she hopes to see me soon. (For context: due to COVID-19, we are currently only allowed to interact with clients and staff for our own homes.) The card was handmade and truly lovely. I will send her one (though not handmade) probably tomorrow.

8. Possibly seeing my husband soon. Currently, we are not allowed visitors at all due to COVID-19. Management though has said they’ll work out a plan on visiting next week. This may mean we need to see our visitors in an assigned room and may need to keep our distance, but anything is better than no visits at all.

This is all I can come up with right now, but it already helps. What have you been thankful for lately?

Dentist’s Appointment

I shared last week that I was going to have a dentist’s appointment soon and was really nervous. I reluctantly agreed with the care facility physician that 1mg lorazepam the night before and 1mg about an hour before my 8:30AM appt should help me enough. It for sure must’ve helped some, but I was a little disappointed in how much of the edge it took off.

I had my appointment today. Went to bed at 8:30PM yesterday evening to hopefully get a good night’s sleep. I didn’t. I half-awoke at least eight times before finally waking up at 4:15AM and not getting back to sleep.

Still, I was calm’ish on the way to the dentist’s office. My dentist’s practice is at the main institution for my care agency in Wilp, which is a 45-minute drive from Raalte. I had fully expected to fall asleep in the car, but I didn’t.

I still didn’t really know what to expect, even though I’ve had a lot of cavities filled before. This was an old filling that needed replacing, so that should be easier. It wasn’t. I did get a topical anesthetic. That reminded me of why I hadn’t had it when I had seven cavities filled at age eighteen. The anesthetic is really, well, weird. I really expected the injection to hurt, but it didn’t. Instead, the feel of numbness and thickness was more annoying.

I was really anxious all throughout the procedure, but had no idea how to make it clear. I mean, my day activities staff was with me and she held my hand, but she apparently didn’t feel me pinching it. Then again, what could we have done anyway?

I had one filling replaced and a new cavity filled. It also turned out I have a pretty bad mouth ulcer near the tooth that needed the filling replaced. That will need to go away on its own. I will need to return in April to get some fillings on the other side replaced.

Now we’re twelve hours on and I do have some slight pain still, but it’s manageable.

I’m just trying to relax this evening. Had a pretty good day overall today. Having lunch with the anesthetic still wearing off, was kind of hard, so we chose to move the Tuesday morning cooking activity at day activities to the afternoon. The tortilla wraps were delicious!

#WeekendCoffeeShare (February 2, 2020)

It’s February, yay. I’m joining in with #WeekendCoffeeShare again, even though I’m not 100% sure I feel like writing. I had a lot of green tea and only one cup of coffee today. It’s interesting that, at my husband’s and in-laws’, I mostly drink green tea, whereas in the care facility I almost always drink coffee. Anyway, let’s catch up.

If we were having coffee, I’d share that this week was a hard one. I don’t even remember what I did on Monday. On Tuesday, I was in a near-constant panic at day activities. I eventually asked to go to the behavior specialist’s office to see if I could schedule an appointment with her to talk. However, the behavior specialist on my case wasn’t in the office. Another one was, but I couldn’t quite make it clear what I needed and so I went back downstairs.

That evening, I had another huge crying fit. I took a PRN lorazepam, but still didn’t sleep all night. In the morning, I kept crying. My assigned support worker informed me that the behavior specialist responsible for my care was on sick leave, but she called the one who’d been in the office on Tuesday.

She visited me at day activities at around 11AM and I talked for about an hour. I talked about all that I was overwhelmed by. Particularly, I felt that I need more support at day activities. This still needs some sorting out, but mostly I do now get an assigned staff member each day.

If we were having coffee, I’d share that from then on, I felt okay and haven’t had panic attacks or meltdowns. I do struggle with some level of overwhelm and anxiety, but it’s manageable.

If we were having coffee, I’d share that on Thursday, the family of a potential new client came for a visit. This stressed me out a little, because I thought another client coming to my home means less care for me. This isn’t the case, the staff said.

If we were having coffee, I’d say that I traveled by train to Arnhem yesterday. A transregional ParaTransit taxi drove me to Deventer station. There, a travel assistant was waiting to help me onto the train. She apparently needed to help someone in Arnhem next, so she actually traveled all the way to Arnhem with me rather than just helping me get on the train. My husband picked me up from the station at Arnhem again. It was a relatively comfortable way of getting eased into traveling by train again.

If we were having coffee, I’d share that my husband and I had pizza at our in-laws’ yesterday. Then today my mother-in-law would be driving me back to the facility, so she picked me up at my husband’s at 4PM. We first went to my in-laws’ house again, where we walked the dog and ate fried potatoes, broccoli and chicken. I had a Magnum almond ice cream for dessert.

If we were having coffee, lastly I’d share that I finally brought some of my soaping supplies to the facility with me today. One of our home staff was leaving this week, so I had originally intended to make her a soap earlier. Thankfully, she will be working at another home with this facility, so when I do make the soap, I can bring it to her.

How has your week been?

Gratitude List (January 17, 2020) #TToT

It’s been forever since I last wrote a gratitude list. This past week has been truly mixed, but I still feel there’s enough I can be thankful for. I’m joining in with #TToT again.

1. Domino’s Pizza. Last week, I went home to my husband for the week-end. When we were in the car, my husband asked me what I wanted to eat for dinner. I said “Pizza” and my husband in turn asked me whether there’s a Domino’s in Zevenaar, the city closest to our home in Lobith. I said there is. However, we’d been taking an alternate route to Lobith, so my husband said we wouldn’t drive through Zevenaar, so did I mind getting pizza elsewhere? Then he started teasing me, saying stuff like “You’re still a bit sick right?” and wouldn’t it be better if we had macaroni with lots of veggies. Eventually though, he did drive to Zevenaar and we had Domino’s pizza. I loved my chicken kebab pizza!

2. The flu being gone. I feel pretty much as well as possible now.

3. Meeting the neighbors. On Sunday, our next door neighbors organized a New Year’s gathering for the people in our street and the surrounding neighborhood. My husband and I are new, so as a kind gesture to me, they had each person in attendance introduce themselves and also describe the appearance of the person next to them. I liked it. The neighbors seem nice. I at first wasn’t too sure how much to disclose about my situation, but eventually did manage to explain some without launching into some type of self-centered and depressing monologue.

4. The soap making plans. I told you about it already on Monday. I’m hoping my husband will be able to bring my supplies tomorrow. He did ask me to think of another activity we can do together in Lobith, since I asked him to bring all my supplies. I after all didn’t feel it’d be a good idea to let him sort through my stuff. Now that I think of it, several ideas come to mind.

5. Ylang Ylang essential oil. I had this in my diffuser on Monday night when I was too hyper to sleep. It’s a lovely scent.

6. Over 8,000 steps on Tuesday. I walked three times. The other days have also been relatively good in the activity department.

7. The peanut butter-chocolate smoothie bowl we made on Wednesday.

8. Chatting to some fellow clients. Like I’ve said before, most people in my home are non-speaking and severely intellectually disabled, but there are some clients in other homes and at day activities who can speak and with whom I can have a normal by non-disabled standards conversation. I had some nice interactions this past week.

9. Lorazepam. Like I said yesterday, I was in a bit of a crisis. Thankfully, the PRN lorazepam I took worked.

10. Getting my Braille display fixed. Some dots had been stuck up for a few weeks. I thought the thing just needed cleaning, so I was hesitant to call the company to get a tech guy to come over. Turned out two cells were broken. I’m so happy the thing is fixed now. I did okay reading with these few dots stuck up, but still, it was a bit annoying.

What have you been thankful for lately?

Another Crisis

As those who’ve been following along with my writing will know, I was in a bit of a crisis on Monday. Tuesday and yesterday were better, but today was bad again.

It started out with a horrible nightmare last night. I still can’t shake the thought that I’ll be kicked out of the care facility sooner or later and that was what the nightmare was about. I woke up all sweaty and fearful. I called the night staff to calm me down.

Then by mid-morning, I felt rather insecure. My day activities group is divided into two subgroups. There are three full-day staff for these two subgroups combined, plus one staff who has the short 10AM-2PM shift. Today, one of the three staff who would otherwise stay the entire day, had the short shift too. I didn’t mind as much, as still each subgroup would have one staff for the full day. Then one of the regular staff, who would stay the full day, had to attend to a client one-on-one. The would-be third full shift was a sub, so she needed help doing lunch. So at the end, my full-day staff ended up helping her in the other room and the short-shift staff was attending to my subgroup on her own. She had to help people get around, to the bathroom, etc., too, so I was feeling rather left out. Everything went a little chaotic and that led me to enter the orange phase of crisis prevention.

There are three or four phases: green for adequate coping, yellow for mild distress (this one is sometimes left out), orange for serious distress and red for crisis. I was eventually able to go back to yellow as lunch was served and I ate.

Then I wanted to go into the snoezelen® room to further calm down. However, the music, though it was my favorite calming record, was way too loud. After some time, I ended up having a severe meltdown. I wasn’t able to calm down once back at my group.

In the end, I decided to take a PRN lorazepam and go back to the home to lie on my bed. I slept for two hours straight. Now I’m back to green again.

I’m joining in with #FOWC, for which the prompt today is “Crisis”. The prompt couldn’t have come at a more appropriate time.

Working On Us Prompt: Psychiatric Medication

I’ve been thinking of doing some posts on the medications I’ve been prescribed so far, but didn’t get down to it till now. Today, Beckie’s topic for Working On Us is psychiatric medication. Beckie asks a few interesting questions I didn’t think of.

First, she asks whether, when you were first diagnosed with a mental illness/disorder, it took you a while to get used to the medication prescribed. Well, my first diagnosis from a psychiatrist was autism, for which there are no specific medications. It took four months after that diagnosis before I first got put on a daily psychiatric medication. That was Risperdal (risperidone). I didn’t like it at all, even though it took only a few days to kick in.

I remained on Risperdal for 2 1/2 months, and then took myself off. I felt that the medication was merely used to keep me just contained enough that I didn’t qualify for more care. Well, it is my firm belief that medication is not a substitute for proper care.

Going off Risperdal was a mixed bag. I felt okay the first few weeks, but three weeks after having stopped taking the medication altogether, I spiraled into crisis.

After taking myself off of the Risperdal, I was without daily medication for nearly 2 1/2 years. I was in a psych hospital, so I can tell you right away that the crisis service nurse was wrong to say hospitalization would mean being put straight back on meds. Apparently my psychiatrist agreed medication is no substitute for proper care. That was until, despite mostly adequate care, my irritability got so bad I just needed something. I was put on Abilify (aripiprazole) and remain on that ever since.

Beckie also asks about withdrawal. I have been on the same antipsychotic and antidepressant ever since 2010 and never lowered my dosage yet. However, I did for a while take Ativan (lorazepam) at a relatively high daily dosage. Then when I wanted to quit, my psychiatrist said he’d prescribe it as a PRN med. Well, I didn’t need it for the first few days, so I didn’t take it. That was until I started experiencing tremors a few days into withdrawal. I am lucky I got only those and didn’t get seizures or the like. Thankfully, I got put back on lorazepam and tapered safely.

Beckie’s last question is whether you work closely with your doctor in managing your meds. Well, I just had a meeting with the intellectual disability physician for my facility last Monday. She is making sure I get my medications and will also order yearly bloodwork to check for metabolic issues etc. I haven’t seen a psychiatrist with my new mental health team yet, but will soon enough. I want to eventually try to lower my Abilify dose. The intellectual disability physician advised me to wait at least six months to get used to living here though.

Gratitude List (September 7, 2019) #TToT

Hi everyone! I’ve been wanting to write a lot today, but somehow, I once again couldn’t find the words to write a proper blog post. This week was a good one in some major ways, but it was also a very stressful one. To focus my mind on the positives, I’m joining in with Ten Things of Thankful (#TToT).

1. The sensory room at day activities. I have been relaxing in it a lot lately. There’s a guy who uses it often, but he was off this past week, so I took full advantage of the available room.

2. Tranquilizers. On Tuesday, I was very irritable. I am so glad that the staff offered to give me my lorazepam and it worked.

3. Great news from the care facility, of course. I got to speak to the behavior specialist and support coordinator, which was good. It was great to hear that I will most likely be moving by September 23.

4. Hearing more about the house we’re buying. We got a go on the mortgage and are now waiting to get the keys.

5. My husband having been able to change the days he’ll be off work. He would originally have the week of September 16 off, but since I’ll be moving to Raalte on the 23rd and we’ll get the keys to our house most likely on the 25th, that wasn’t ideal. My husband will now have the week of the 23rd and the week of the 30th off.

6. Nice food. To celebbrate the great news about my moving to the care facility, my husband got us pizza and a tompouce (a Dutch pastry) on Tuesday. On Thursday, I was stressed, so I bought myself a lot of snack food. Still, I enjoyed it.

7. Horseback riding again. Yesterday marked my first riding lesson after the summer break. I rode Morritz again. I didn’t ask about Angie, the horse I previously often rode, who was injured some six months ago. As the weather was relatively good, we rode our horses outside.

8. My stuffed bear. I had a lot of nightmares and vivid dreams this past week, so I am all the more grateful for the stuffed bear my mother-in-law won for me at an animal shelter event last year. I have a ton of other soft toys, but this one is the biggest.

I am also grateful for the extra duvet my husband laid over me some nights back when he realized before me that I’d otherwise feel cold.

9. Painkillers. I’ve been having a toothache lately and had a headache yesterday. They may or may not be related. And yes, my father-in-law is a dentist, but this makes me more wary of going to the dentist (him) with this. Thankfully, paracetamol has been working.

10. My amazing fellow clients at day activities. A new girl started yesterday. She’s nice. So are the others. Most don’t understand that I’ll be moving, so I haven’t told them yet. I’ll be missing them.

What have you been grateful for lately?