#WeekendCoffeeShare (March 5, 2022)

Posted on by Astrid

Hi everyone on this beautiful Saturday afternoon. I’m joining #WeekendCoffeeShare again today. Sorry I missed out on it last week. I just finished my afternoon coffee and I’m pretty sure there’s still some left, so let’s have a cup of coffee (or tea) and let’s catch up.

If we were having coffee, firstly I’d share with the #WeekendCoffeeShare community that I caught COVID after all. Thankfully, I’m out of quarantine as of last Tuesday. I’m still horribly exhausted and easily out of breath. Things are slowly improving though. I mean, today I had an easier time of it walking around the day center than I did on Thursday.

If we were having coffee, I’d tell you that the weather here is truly beautiful. It’s cold. Okay, when will I stop saying that? Probably when it’s 25°C. Seriously though, in the morning, the temperature can easily get below zero. All that being said, it’s sunny and it doesn’t even feel as cold as it used to in the middle of winter when it was as cold as it is now.

If we were having coffee, I’d say that I’m looking forward to sitting on my balcony again. Unfortunately, the door won’t open. We discovered this yesterday when some men came to repair the blinds and they wanted to go see them from outside. The door to my balcony is locked, but the staff do have a key. It wouldn’t give way though. I’m hoping it can be repaired soon, because, while it is too cold to sit on my balcony right now, it won’t be for long.

If we were having coffee, I’d share that quarantine meant I haven’t been as crafty as I would’ve wanted to be, but I made up for it over this week. I haven’t finished most of the things I’ve created. However, I did finish one piece of polymer clay work and VoiceOver guessed correctly what it’s supposed to be: a sea shell.

Polymer Clay Shell

I used dolphin gray Fimo for the shell itself and colored it using chalk pastels in dark brown (if I remember correctly) for the hole and an orangey brown for the shell itself. I am so disappointed that my chalk pastel set doesn’t come with a list of what the colors are supposed to be called. I mean, I saw one on the site I purchased it from, but then I can’t pair the names with the actual colors.

If we were having coffee, lastly I’d tell you that I’ll be getting a new one-on-one support staff soon. He’s been orienting a few times already. Because he’s a man, I felt kind of distrustful of him at first. That’s in part my prejudice talking. I’m hopeful it’s going to work out though.

How have you been?

Gratitude List (January 22, 2022) #TToT

Posted on by Astrid

Hi everyone. It’s time for another gratitude post. I’m struggling a little, but, as I’ve said many times before, this makes them all the more important. As usual, I’m joining in wiht Ten Things of Thankful (#TToT). Here goes.

1. I am grateful to have seen my husband on Sunday. We went to the Subway drive-through to get a sandwich. I chose a turkey one, to which my husband asked whether I took it because of my diet or because I was in the mood for turkey. “Both,” I replied.

2. I am grateful my mother-in-law visited me on Wednesday. We went for a drive around the nearby countryside and for a short walk in a nearby village.

3. I am grateful for muesli for breakfast. I am also grateful the dietitian allows me muesli with some nuts or raisins in it and it doesn’t have to be plain grain.

4. I am grateful for blueberries. When in the nearby village with my mother-in-law, we decided to get some groceries for her. I decided to get blueberries too.

5. I am grateful my dental chek-up last Wednesday was uneventful and, other than the fact that I have inflamed gums, everything was fine.

6. I am grateful for a good laugh with one of my staff on Thursday. I originally was anxious about her being my one-on-one that day, because a few weeks prior she’d triggered me with what she thought was encouragement of my independence. I thankfully talked it over with her and we then laughed our butts off at some silly jokes we were cracking.

7. I am grateful I am inspired to write on my blog. I still struggle to find the motivation to go on walks or to craft, but at least I’m writing almost everyday, sometimes twice a day.

8. I am grateful my nurse practitioner keeps trying to help me and takes me seriously despite how complicated I might be. I have been experiencing increased flashbacks to the time I spent in the psych hospital lately, but I try to remind myself my staff and my treatment team at mental health are different.

9. I am grateful it looks like the essential oils I ordered on Thursday, are on their way. I ordered with a company that doesn’t use the bank’s payment processing system, so I had to make my payment manually, then panicked worrying that I’d made a typeo somehow. Apparently not. Let’s hope the company isn’t altogether lying and will actually have shipped my essential oils.

10. I am grateful I’ve found the courage to experiment with essential oil blends that are slightly different from the ones I find online. For example, earlier I used tangerine rather than orange in a blend that otherwise contained cardamom and cinnamon. It smelled delicious!

What are you grateful for?

2021: The Year in Review

Posted on by Astrid

Each year at the end of the year, I look back at the past year and do a review. Today, I’m doing one for 2021.

At the beginning of the year, we were all cautiously optimistic about the vaccine being the ticket out of the coronavirus pandemic. It wasn’t. I got my first shot in early February and my second shot a month later. In early December, I had my (first) booster shot. I’m pretty sure more are still to come.

At the end of 2020, I first had my one-on-one support approved. It took some time to figure out how the staff should best fill in the allocated hours. Initially, the manager wanted my husband to be clear on when he was going to have me home with him, so that my one-on-one hours could be canceled then. This wasn’t doable for my husband or me, so finally it was agreed that my hours would be filled in regardless.

For most of 2021, we had day activities at the home due to the pandemic. Thankfully, by September, the day center opened and the clients were mostly back to their pre-pandemic groups. I, however, was not. Thanks to my one-on-one, I was provided day activities in the home and this continues to be the case so far. There has been talk of me starting in a small group, but this isn’t doable for me right now or within the foreseeable future.

For the first half of the year, I struggled a lot with the battle inside my head between wanting to live more independently and wanting even more support. This led to a climax in mid-June, when the manager told me that more support is really not possible. I was in a crisis for about two weeks. Then I started my new medication, topiramate, which calmed some of the inner conflict. It, of course, helped that I was reassured that, regardless of my attempts to push staff away, I was going to keep my allocated one-on-one support hours at least until the end of December. And of course now they have been approved until December 2023.

Over the summer, when my topiramate started to kick in, I was able to be more creative than I’d been in a long while. I started polymer clay once again and have been able to enjoy this hobby ever since. Like I mentioned when I wrote down my hopes for 2021, I didn’t intend on doing it all independently and that’s still not one of my hopes.

Looking back at my hopes, I did pretty well on them for this year. See, I think it helps that I don’t call them resolutions or goals, ha.

Overall, this year was a pretty good one for me personally. Even in terms of COVID, it’s been as good as possible, in that I haven’t contracted the virus and neither has anyone else in my home. One of my staff tested positive recently and originally we were supposed to all get tested today. After conferring with the care agency’s pandemic team, this got canceled though. I may still get a lateral flow test later today just to be sure. Let’s hope I won’t end the year with COVID.

How has your 2021 been?

Share Your World (December 27, 2021)

Posted on by Astrid

Oh my, can you believe we’ve officially started the last week of 2021? Not even the last full week? I seriously can’t believe how quickly time flies at the end of the year.

Today, I’m joining Share Your World or #SYW. I just discovered that Melanie ditched her domain, which was the reason I hadn’t seen her posts in over a month. Shame on me for not having found out before! This means I’m probably having to redo all my other links to her posts. However, now’s not the time to do this. Anyway, let’s get started. I don’t do #SYW that often, so for those who don’t know, it’s a meme where you get to ask four or five of Melanie’s weekly questions, plus share your gratitude. Here goes.

At 12 a.m. on December 31st/Jan 1st, what will you be doing? (use your own time zone please)
Probably sleep. I will be at the care facility for New Year’s and all celebrations here take place during the day or evening, including the (light) fireworks. There will not be any extra staff till 12AM. Of course, we do have two waking night staff, but it’s not like they’re going to party with me.

Is there a tradition you have for New Year’s Eve?
Usually we’ll eat “oliebollen”, which I was told last year are much like donuts but then the opposites, ie. the holes.

Do you have any hope or reason you find that next year will be better?
Yes. Like I said a couple of times before already, my one-on-one support got approved for the coming two years, so I won’t have to worry about losing my support for the entirety of 2022.

What’s the biggest personal lesson you learned during 2021?
To trust that, with God’s help, things will be okay in the end, I guess. I know COVID and many other of the world’s problems are likely here to stay for a while. I don’t want to dismiss other people’s problems by saying that for me, 2021 was a much better year than 2020. I however do trust that, ultimately, God will work things out for the better.

GRATITUDE SECTION

Describe in 1-3 words how you feel going into 2022
Hopeful, joyous, grateful.

Dear 2021…

Posted on by Astrid

Twenty-twenty won
That’s how you begun
For good or for bad
All that we had
Back then, you would continue
And you did

For most, it was probably a sad thing. COVID wasn’t over with. In fact, it’s likely here to stay.

For me, it was a good thing though. At the end of 2020, I was approved for the right level of one-on-one support for a year. I just found out last week that it got approved for another two years to come. I am so relieved! For me, I am more than happy that twenty-twenty won. At least in this respect.

This piece was written for Friday Writings, for which the optional prompt this week is “Dear 2021…”.

Gratitude List (December 10, 2021) #TToT

Posted on by Astrid

Hi all on this cold but lovely Friday. Today, I’m doing a gratitude post, just because I can. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my mammogram came back all clear. I still suffer with slight discomfort, but I feel comforted knowing it’s nothing serious.

2. I am grateful I got my COVID booster shot yesterday and I didn’t even suffer a sore arm. Well, not that arm, at least. All my limbs were stiff this morning, except for the arm I’d been jabbed in.

3. I am grateful my one-on-one support got approved again. Not only that, but it got approved for two years this time! I am so intensely happy, but still can hardly believe it.

4. I am grateful for crafty inspiration. I am currently working on a mixed media Christmas project which includes polymer clay.

5. I am grateful my husband was able to sort out my health insurance for next year. Here in the Netherlands, basic insurance is mandatory but you get to pick your own private insurance company. The government decides what is covered under basic insurance but insurers get to fill in the fine print and decide which care providers (eg. doctors, hospitals, etc.) to contract with. In addition, they get to offer additional coverage packages. For several reasons, my current health insurance was no longer fitting for me, so I decided to change insurers, but needed my husband to help me make the actual switch. I am so glad it seems to be sorted now.

6. I am grateful we still have pepernoten. That’s a typical St. Nicholas (December 5th) treat and I love it!

7. I am grateful that I was able to have quite varied lunches over the week and most were relatively healthy too. I had Turkish pizza on Wednesday, which was my unhealthy lunch of the week. Yesterday, I had a boiled egg on bread and today, I had a toasted cheese sandwich. On Monday and Tuesday, I think I had my usual lunch of a peanut butter sandwich, which I don’t really like.

8. I am grateful I was able to clean my essential oil diffuser (the new one) yesterday and that it was hardly dirty at all.

9. I am grateful for my Christmas tree and its lights. Its lights were almost out this afternoon, so initially I thought its batteries were empty. That would’ve been highly annoying, since I had only put the batteries in last week. Thankfully, switching the position of the batteries did the trick of turning the lights on again.

10. I am grateful I have been sleeping really well over the past several nights. Last week, I had a few rough nights, but this week is much better.

It was harder than I expected to actually make it to ten things of thankful. I mean, I am overjoyed at my one-on-one having been approved, but that makes for only one item on the list. However, I am trying my best to remind myself that even the little things in life that I am grateful for, can and should make it onto this list.

#WeekendCoffeeShare (November 6, 2021)

Posted on by Astrid

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?

Reclaiming November

Posted on by Astrid

Tomorrow is November 1. November is the hardest month of the year, since it is the month in which I ended in crisis in 2007.

Thirteen years later, it was also the month in which I finally broke down and admitted I needed more support than just the care facility’s group home support. On November 8 of last year, I broke down when a staff (the same staff who is now my assigned home staff) asked me to either calm down or go to my room when I was acting irritated at the other clients’ noises. My reaction wasn’t pretty: I hit the staff, screamed I hated her and cried out that indeed, as I’d been saying all along, if I showed who I truly was, she’d abandon me. She didn’t.

During the days that followed, I experienced significant dysregulation, including some near-psychotic symptoms and a lot of sadness. One day, I was crying my eyes out in my room when another staff came in and said she was going to spend her entire two-hour shift with me. We talked and she asked me whether I’d ever heard of one-on-one support. I had, but asked her to elaborate anyway. She did and asked me whether I wanted that. “Yes,” I said. The next day, the staff I’d hit and my then assigned home staff made the paperwork in order, because I had to sign a letter to the manager formally asking for more support. By mid-November, the wheels were set in motion for me to get one-on-one support and my one-on-one was pretty soon effectively started.

Now, as we’re approaching another November, I’m reclaiming the month. I don’t want this to be the month I landed in crisis so many years ago for the rest of my life. Instead, I want it to be the month I chose to get the support I need. I am choosing to stand up for myself, not just because crisis states force me, but because I have a right to do so.

Joining My Vivid Blog’s prompt: “Tomorrow”.

Gratitude List (October 22, 2021) #TToT

Posted on by Astrid

Hi all on this mixed-bag Friday weather-wise. It’s cloudy with some rain, but the sun tries to peek through here and there too. I seem to have given up on the blogging challenges entirely, but I’m still attempting to write as often as I comfortably can. Today, I’m doing a gratitude list. I’m joining Ten Things of Thankful (#TToT) as usual. Here goes.

1. I am grateful my staff, the one who is on sick leave, was happy with her presents. Like I mentioned before, I gifted her a handmade soap, hand cream and bracelet. Another staff delivered it to her house as to allow me to save money on postage. The staff who is on sick leave, later texted the other staff an audio recorded message for me. It was so sweet!

2. I am grateful for my nurse practitioner and community psychiatric nurse. On Sunday, I landed in a bit of a crisis and E-mailed them, along with my assigned day activities staff and my support coordinator. My nurse practitioner responded on Monday. Though I felt like he was downplaying my crisis a little, my CPN later said that she at least felt that I was doing well because I asked for help.

3. I am grateful my GP takes me seriously. This really could’ve been a grateful for last week, but I forgot to mention it then. As regular readers of this blog might know, I’ve suffered with what doctors think is irritable bowel syndrome with constipation for years, but it’s gotten worse and somewhat different over the past nine months or so. I saw my GP about it a few weeks ago and he initially sent me home with orders for the staff to fill out a rating scale on my bowel movements. Boy, was it embarrassing having to ask the staff to look at my poop! Thankfully, it did show that I hadn’t been misguided about my symptoms. Last week, we went back with the rating scale and the doc examined me again. After discussing me with the gastroenterologist, he decided to refer me for an abdominal X-ray. It’s been scheduled for this coming Tuesday.

4. I am grateful for my husband’s ability to put things into perspective. I have been worried sick (no pun intended) about the possible outcome of said abdominal X-ray. My husband though said that, since I’ve been having symptoms for as long as he knows me, it’s not likely to be anything serious.

5. I am still grateful for topiramate. The increased dosage does seem to do something in the end. Last night, I had dreams about leaving the care facility, but they do not seem to affect me as much as they used to. I call that a win!

6. I am so grateful for one-on-one support. I cannot say this often enough. I am so very grateful my staff aren’t leaving me when I’m in crisis.

7. I am grateful the chili con carne I had for dinner yesterday was better than I expected. I hadn’t had meal delivery company chili in a while since it’s part of their fall/winter menu. However, I’d remembered it as dry rice with dry beans and a tiny bit of mince thrown in. To my surprise, they’d actually added some sauce and there was more mince in it than I expected.

8. I am grateful that the people who were installing blinds on my side of the building, are finally done doing so. Originally, only the other side of the building had blinds on the outside, but some of my fellow clients suffered badly from the sun shining through their windows during the day especially in summer. It took the company several weeks of installing the blinds and they had to be in each room to program them too. Thankfully, they programmed mine to manual, not automatic. Otherwise, if it’s sunny, the blinds will go down, then if a bit of wind blows they will go up, then down again, up again, etc. I’d rather keep them up and just draw the curtains when it’s sunny.

9. I am grateful that, when they were working on my blinds this afternoon, my one-on-one took me to the snoezelen® room at the day center. After all, the noise was quite unbearable. I loved lying on the waterbed while there was no-one in the adjacent room. So nice!

10. I am grateful I had the energy to go on the elliptical for over 30 minutes this afternoon. When I first stepped onto it, it felt as though I’d hardly manage 15 minutes, but I did pretty well.

What are you grateful for?

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Posted on by Astrid

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.