#WeekendCoffeeShare (November 10, 2019)

As with Ten Things of Thankful, I haven’t joined in with #WeekendCoffeeShare in a long while. It’s late Sunday evening here, so my week-end is almost over. Then again, there’s still time to join in, so let me. I just had a drink of Crystal Clear, which is a type of non-carbonated soft drink. I hate carbonated soft drinks except for the very slightly carbonated drink called Dubbelfrisss. I haven’t had coffee since one o’clock in the afternoon, but if those who are in a different timezone (or even those in my timezone, cause who cares?) want a coffee, that’s fine by me.

If we were having coffee, I’d share that this past week has been filled with appointments. On Tuesday, I had a review at the care facility and on Thursday, I had the intake interview for mental health.

If we were having coffee, I’d share that the review went okay’ish. Honestly, I don’t remember that much about it, as the day activities staff seemed to be rattling off a list of changes they want to implement. That had me go “Whatever” only to melt down later in the afternoon when I saw what these changes were doing.

For one thing, the staff got shuffled around a bit so that my group has less staff available. That was a big change that caused me to go into panic.

Fortunately, the staff called for the behavior specialist to talk to me and they together were able to calm me down a bit. I still feel uncomfortable particularly with this specific staff. She’s leaving next week anyway, so oh well.

If we were having coffee, I’d share that my intake interview with the mental health team went pretty well. A staff from my living place went with me. This was comforting. At one point, a little came out, who reached for her hand. This felt good and the staff said that she was totally okay with it.

If we were having coffee, I’d share that tomorrow I have yet another appointment. I will be having an introductory appointment with the intellectual disability physician for my facility. I’m not sure what I expect out of it.

If we were having coffee, I’d share that I went home to my husband this week-end again. We had Chinese takeout this evening, which was good. Since my husband moved to Lobith six weeks ago, we haven’t had Chinese takeaway. It was much better, in my opinion, than the Chinese takeaway in Doesburg (near our old village). There, I’d pick it as a choice sometimes over other food vendors because you got loads of food, so it was essentially a huge binge I’d later pay for with bowel cramps.

If we were having coffee, I’d share that I had a nice walk with my mother-in-law and her dog Bloke this afternoon. We walked for nearly an hour, which was really good. After all, though I manage 30 minutes of activity most days, I’ve not had long walks in a while.

If we were having coffee, lastly I’d share that I’m now enjoying some of the liquorice my husband bought me at my request this afternoon. I’m being careful not to eat it all and trying to be mindful of my wish to actually enjoy the candy rather than stuff it all in at once.

What have you been up to lately?

Gratitude List (November 9, 2019) #TToT

Oh my, it’s been forever since I participated in Ten Things of Thankful. I think I participated once since moving to the care facility. The thing is, I have a ton of ideas for blog posts on my mind but only so much time to complete them. I mean, maybe a gratitude list should be one of the easier ones on my list, but oh well. I don’t know. I don’t want to make up excuses, so here’s my gratitude list.

1. Eating out with my husband and sisters-in-law. The sisters-in-law had offered it to us as a present for us having bought a house. We went to an all-you-can-eat restaurant. My husband thought he wouldn’t particularly like the food, but he did and I loved it. As those who know me well will admit, gluttony is my main deadly sin, LOL.

2. Great reading. I don’t nearly spend as much time reading as I’d like, but I do love the books I’m currently reading.

3. An increase in mental clarity and energy. I’ve been doing better in the brain fog department lately. In fact, I can usually manage to be quite active either physically or mentally most of the time during the day.

4. The sensory room at day activities, including its music player. It is connected to the waterbed, so that the music almost surrounds you when you’re lying on the waterbed.

5. A nice behavior specialist. On Tuesday, I had my review at the care facility. It went okay, but after it, I did experience some trust issues particularly with my day activities staff. She called out for the behavior specialist to talk to me some more and the issue got mostly resolved.

6. Sunshine. Of course, it’s fall here, so we don’t experience the great weather of summer, but we did get some relatively sunny days. It was nice being out in this weather.

7. My former psychiatric nurse practitioner calling me to check in. He also finally sent me the form he’d sent to the assertive community treatment team in my town, since I hadn’t read it yet. It was good to talk to him for a bit.

8. A good intake interview with the nurse practitioner and social worker from the new team. I was able to explain myselves quite well. My current diagnosis apparently is unspecified personality disorder with dissociation along with autism spectrum disorder, but I was able to go into some detail about the extent of the dissociation. It was good also to have a staff from the facility with me. This team is more concerned with one’s individual needs for support than with one’s diagnosis.

9. Walking. When I first came to this facility, I didn’t expect to get out and about much, but I usually do manage at least 30 minutes a day even now that fall has truly set in. I tried to reconnect my Fitbit when I found its charger earlier this week, but the app seems to have locked me out. I don’t really care though.

10. Sleeping with music on. On Thursday, I was so tired from the intake interview at mental health that I slept most of the evening away. I slept with a lovely playlist on Spotify playing on my phone. I am still considering getting myself a music pillow.

11. My husband. He’s so nice! It’s hard not seeing him as much as I used to, but he showers me with love each time we do see each other.

What have you been grateful for?

A Night-Time Crisis

So I really need to get something off my chest. Yesterday was a mostly good day, as you can see from my previous post. However, in the evening, we landed in a pretty bad crisis.

It started out with the evening staff wishing me goodnight at 9:45PM. I still had to brush my teeth, so she asked whether I would manage. Normally I do, so I said “Yes”. When I was done brushing my teeth, my gums hurt from the inflammation and I was considering asking for paracetamol. I mean, I could’ve waited till the pain got severe, as I did the previous night, but then I’d have to bother the night staff.

I also realized the evening staff had left the light on. I had asked her to switch it off (it is a truly stupid switch which I can’t work), but she had asked me how I’d manage without light if I wasn’t ready to go to bed yet. Well, like, how I manage virtually all the time without light. I have light perception, which can be useful but in this case was more bothersome, in that it meant having to go to bed with the lights on. I can write blog posts and do basically everything with the lights off, but I cannot sleep with the light on. So inbetween the argument of whether I would be comfortable in the dark, the staff actually forgot to turn off the light.

As it was only 9:50 and the staff are supposed to be here till 10:15PM, I went looking for the evening staff rather than push the call button. She was gone. Then I pushed the call button. No response. In the next 30 or so minutes, I got increasingly panicked. I heard the buzzer go off so assumed the evening staff either must be somewhere but not care, or she’d left the phone with the buzzer in the house rather than having given it to the night shift. So how would I reach anyone now?

I was very panicked, engaging in self-injurious behavior, screaming and shouting. I was so scared and angry at the same time. If the staff are supposed to be here till 10:15, why did she leave by 9:50?

At one point, I somehow opened the door to leave the unit. Our unit is at the top floor of the building. It is sort of locked, in that my fellow residents can’t work the key to open it. I thought neither could I but somehow I can.

I ran out the door, intending on I don’t know what, going outside or something. My first response in panic is either fight or flight, and in this case I utilized flight quite literally.

A staff from the downstairs unit found me crying at the top of the stairs. Another staff from our neighboring unit came to the rescue too.

It turns out the night shift doesn’t start till 10:30. This is one night staff who caters to the entire facility, so she isn’t physically present on my unit most of the time. Well, how am I going to reach a staff in an emergency if the evening shift leave at 9:50 (or 10:15 in an ideal situation) and the night shift doesn’t come on till 10:30. My staff eventually found the solution of giving their phone to the neighboring unit, where staff is available till 10:30.

Finally, the night staff, who had joined the other two staff in helping me, gave me my paracetamol, plus a lorazepam to calm my anxiety, and turned off my light. Nonetheless, I didn’t sleep till around the second time the clock hit 2:30AM (daylight saving time ending). The night staff, though she hardly knows me as she only works nights, was nice enough to sit by my bedside and comfort me for a little while.

Attachment Issues and Other Ramblings

Hi people, how are you? I hope you’re doing better than I am, as I’m basically feeling pretty crappy. I tell myself I need to enjoy the good moments, good days even, here in the care facility. I believe that if I don’t feel happy here, then the staff could just as easily kick me out and make room for another person. I know paradise doesn’t exist, so can’t I just be happy with what I have?

That’s not the problem though. I’m not looking to leave this place or thinking I can have a better life elsewhere. I can’t. But still, I’m unhappy at times. Then again, isn’t everyone? And yet I beat myself up over it, which leads to more unhappiness, which leads me to beat myself up even more.

At the root of all this seems to be a deep-seated belief that there’s no place I’ll ever fit in, and if I do believe I fit in, the staff won’t agree and will kick me out. I feel as though I have to prove that this place is perfect for me – which it isn’t, of course. But it’s as close to perfect as can be and that’s enough for me. But is it for the people around me?

Last night I barely slept for two hours. At 5:30AM, I accidentally sent out a video call to my husband while trying to distract myself. He called back almost immediately, as he was at work already. He assured me that he doesn’t want to get rid of me and my staff don’t want to get rid of me either. I was happy enough with that that I could sleep.

This morning, a relatively new to me staff woke me up. She asked whether I’d manage getting started on my personal care. Normally, I get some help on Wednesdays, but I was too tired or confused or scared to ask her for help, so I just went about doing my morning routine. I was feeling pretty out of it, but I couldn’t explain.

The rest of the day was okay. I went to the dentist this afternoon for a check-up and because I’ve been having some pain. I have inflamed gums, but other than that my oral health is good. I was told I brush my teeth well, something I attribute to the electric toothbrush my husband gifted me for my birthday. Now I will need to use toothpicks too. One filling that I’ve had for like fifteen years needed replacement, but that will happen at my next appt.

Fatigue (For Lack of a Better Word)

And yet again I did not blog for what feels like an eternity. To get myself back in the swing of things, I’m just opening the WordPress app and writing. I don’t know where this will lead.

I’ve been feeling off lately. Pretty fatigued. This is nothing new, even though when I talked to my staff about it, they originally wanted to chalk it up to my transition into the care facility.

The thing is, this fatigue thing or however to describe it, as well as what I can only describe as a slow decrease in cognitive energy, has been going on forever. I told my staff about it on Tuesday and told her I want to discuss it with the facility’s intellectual disability physician when I have an extensive introductory appointment with her in November. Not that I have an intellectual disability, but the physician wants to have an appt with me, so why not make use of it? That’s probably still going to happen, but the staff called the general practitioner anyway, because I have a history of vitamin and mineral deficiencies. The GP ordered bloodwork, of which I hope to get the results soon. I guess nothing’s up once again and that probably means that my vitamin B12 deficiency that I had in 2015 was indeed due to poor nutrition. Or something. I don’t know.

The annoying thing is, physically I appear fine. Intellectually probably too, simply because I have a lot of reserve. It’s easy to chalk this whole thing up to autistic burnout, but then again doesn’t one ever recover from that? And does it even get worse at the relatively early age of 33?

I still feel like a burden for raising this issue. I mean, yes, I’m more forgetful than I used to be, but I can probably still pass a mental state assessment. Besides, compared to my fellow residents, I’m like superhuman where it comes to independence. So yes, why even see the intellectual disability physician? But she wanted to see me, so yeah.

Last Tuesday, after I told the staff about my concerns, I felt very stressed. The staff was so very nice! She asked if I wanted to take a bath, but I initially declined, because I knew it was several other residents’ bath time. I know that I shouldn’t be filling in what other clients need, but well. Then she offered to take me to the sensory room at the day center. It was great. I still felt very unquiet mentally after it, but physically I could relax.

I’ve been using the sensory room more often these past few days. The staff in charge of the sensory group at day activities even bought me a blanket that’s mine alone to use when there. This kindness totally amazes me. Of course, I’m still waiting for the other shoe to drop, as I seem to have had so much experience of unhelpful support staff (to use an understatement) that I doubt there’s even ever a place where I can feel well cared for.

Moving to the Care Facility Soon!

As regular readers of this blog know, I’ve been planning on moving into long-term care for nearly a year. That is, that’s how long it’s taken me to decide I for sure want to apply for long-term care funding, to apply for it, to appeal the decision denying me the funding, to win the appeal and then to find a place. Honestly, this whole journey has been going on much longer. Twelve years ago this month, I told my support coordinator in Nijmegen that I wanted to get into one of their living facilities for people with mobility impairments. Due to my psychiatric hospitalization, this idea got trashed and we ended up looking for places for people with mental illness or “high-functioning” autism. That took many years and was unsuccessful in the end. I got kicked out of the mental hospital in May of 2017 for supposedly wanting to remain institutionalized forever. Well, the psychologist was right in that I feel I need 24-hour care for the rest of my life, but I most definitely didn’t intend on staying in the psychiatric hospital forever. I’d much rather go into a facility for people with developmental disabilities. Thankfully all this time of battling the system that says that an IQ above 85 means you should be pushed towards independence forever, ultimately paid off. I will be moving to the care facility in Raalte on September 23.

The house I will be placed in, has room for twelve residents, divided between two groups of six. There’s always at least two staff in the house during the time the residents are home and awake. During the time we’re supposed to be at the day center, there’s an on-call staff for the entire living facility, but of course there’s staff at the day center. During the night, there’s a sleeping staff at my house, but there’s also a staff who is awake and serves the entire facility.

I will get a room with its own bathroom. This room is a bit further down the hall than the other currently available room, but that room has a shared bathroom. At first, I said I didn’t mind, but the staff warned me that the other clients don’t clean up after themselves. I will get a call button to alert a staff member, so if I can’t get out of the rooom for whatever reason, I can still call the staff if they don’t hear me shouting.

On Thursday, the staff will be discussing what day center group I’ll be placed in. The day center manager did say, after I asked it, that my elliptical can be placed there. They have day activities Monday through Thursday and on alternating Fridays.

They will make sure they have an extra staf available on the 23rd when I move in. They asked my day center’s coordinator whether either she or my support coordinator can come the next day for proper handover.

After a month, we will have a review of how things are going. They made it clear that this is not for the staff to decide I need to be moved out again, but for us to discuss ways the staff could possibly better accommodate me.

I am very excited to go to Raalte! My husband may ask for time off work to move me, especially since this week is also the week we’ll meet with the solicitor for property handover on the house we’re buying. It all is a bit stressful still, but I”m so glad I’ll finally find a place that’s not for independence training or treatment or the like. Finally, I’ll be able to stop merely surviving and start living.

Candy Cake

I want to write more often about the ordinary things I experience in daily life, particularly those I’m grateful for. I considered doing a daily gratitude post or the like, but I guess that would get boring. Today though, I have some really joyous experiences I want to write about.

I may or may not have shared that, when my husband and I got married in 2011, we got a homemade liquorice cake from the staff and patients at the psychiatric unit I resided at. The bottom was made out of a Dutch candy called foam blocks. These are really made entirely of pressed-together powdered sugar and they’re yuck. The top, however, was layered with my favorite sweet liquorice. I loved it!

When my support coordinator and I were in the process of appealing the authority’s decision to deny me long-term care funding, we agreed to make another liquorice cake if we succeeded. And we did! Today, we made the cake.

Candy Cake

As you can probably see, we didn’t choose foam blocks for the bottom layer. Instead, my support coordinator bought waffles, which are not only more tasty but also softer. This meant that my fellow clients at day activities who have swallowing difficulties, could at least eat some of the cake. After all, they can’t eat liquorice.

We then made a layer of marshmallow diamonds. Then we layered the top with an assortment of winegums, sugared candy and liquorice. Finally, my support coordinator sprinkled sugared pop rice over it. In the middle, we stuck a candle in the shape of the number four into one of the marshmallows. This symbolizes the fact that I got my funding approved on June 4.

My support coordinator took the picture above, so that I can show it to my husband and on this blog. Seeing AI, my image recognition software, did recognize the picture as being of a cake.

We ate some of the cake at our mid-afternoon coffee break at day activities. Though the other clients don’t understand the reason I made this cake, they definitely enjoyed it. And so did I!

I Got Approved for Long-Term Care!

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

Thankful Thursday (May 30, 2019): My Mother-In-Law

It’s Thursday and I haven’t blogged in a few days. I’m feeling the pull of depression worsen and that’s not helped by the fact that I still am not done with the long-term care application process. My husband, in-laws and support staff try to remain positive, but I’m having a really hard time of it. I haven’t updated my list of alters on this blog in a while and several have recently emerged. Some seem like they’ve been around longer, but a recent disappointment in the care application process caused us to split again too. I don’t know whether that’s even possible or it’s a sign of us being a fake dissociator, but oh well.

Thursday means it’s time for Brian’s weekly Thankful Thursday blog hop. I only participated once before and that was when I’d just seemed to lose hope that my situation would ever improve. Because the long-term care laws would be changed in 2021 to allow the mentally ill access, I said that by then everything would fall into place. It looks more like that than ever now. Only thing is, I’m pretty sure I can’t hold on that long. But I digress. This post is supposed to be positive.

Today I am most thankful for my in-laws. When I got the latest disappointing news on Tuesday, my mother-in-law offered to pick me up from day activities. This was unrelated, but it couldn’t have been more coincidental. I spent the evening with her, my father-in-law and my mother-in-law’s niece, who temporarily lives with my in-laws. I spent yesterday evening there too, meaning I had to spend a manageable amount of time alone.

Today is a bank holiday and tomorrow, my day activities is closed too. Since my husband does have to work, I would’ve had to spend the day alone at home if not for my mother-in-law. She offered to come by in the morning for a cup of coffee and in the afternoon too for either tea or to take me to my in-laws’ house if my husband would be home from work late.

I am also thankful for my support coordinator and support worker. Next Monday, my day activities will be a bit short-staffed so I can’t go for the weekly Monday-morning walk, as there’s no-one to guide me. However, my support coordinator offered to come by in the afternoon to take me on a walk. She’s also been incredibly supportive of me during the latest developments. My husband said she deserves half a truck filled with Merci chocolates for all the work she does for me. And I agree. My mother-in-law deserves the other half of the truck.

Gratitude List (March 16, 2019) #TToT

I have been feeling a little off lately. This morning (or early afternoon to be exact), I awoke and immediately felt grumpy. I had a hard time snapping out of the moodiness. Then I read in a Dutch Facebook group about listing the positives of a day. I haven’t participated in #TToT for a while, so it’s about time.

1. Pizza on Sunday. We’d planned on having fries and snacks on Friday, but then my husband had to work late, so I ate at my in-laws. I don’t know whether the pizza night on Sunday was to make up for that, but I loved it.

2. More day activities! From next week on, I’ll be going to day activities a full day rather than just the morning on Monday. On Tuesday adn Friday, I already go full days and I’ll try Wednesday someday. Thursday will remain my day off.

3. Swimming on Tuesday. I was able to go in the deep pool again and swam almost the entire half hour.

4. Eating potato and carrot mash at my in-laws. There’s a word for this in Dutch, but I’m too lazy to look up whether there’s one in English too. My mother-in-law gave me the choice between that and sauerkraut. I didn’t expect to like the mash either, but I definitely hate sauerkraut. Surprisingly, I liked the food. Not enough to ask for second helpings, but enough to eat my first serving.

5. Phone check-ins with my support coordinator. As of last week, she’s been checking in with me at the end of nearly each day she works. I love it.

6. Being able to go for a short walk with my support coordinator on Wednesday. It rained almost the entire day, but when we went for a walk, it didn’t.

7. A rainbow. When walking with my support coordinator, she spotted it and took a photograph. She says this is our lucky rainbow.

Rainbow

8. Blueberries, bananas and honey liquorice. I went to the supermarket with my support worker on Thursday and got myself these. I particularly loved eating the blueberries in my yoghurt on Friday.

9. Outdoors horseback riding. Again, the weather treated us well on Friday afternoon. It rained the whole day, but when it was time for us to go horseback riding, it didn’t. I don’t like indoors horseback riding nearly as much as I do going outdoors, so this was wonderful.

10. Meditating. I’ve been doing a bit of it again this past week. It’s still hard to find the time and focus for it, but I love it. I finally figured out a way to play the learning to meditate course on Insight Timer. For whatever reason, VoiceOver renders the button to play it non-clickable, but somehow I got it playing. Now I may get Insight Timer premium once my disability payment is in.

What have you been grateful for lately?