Negative

Posted on by Astrid

This is probably going to be a quick post. Like I said on Sunday, I was interrupted while blogging by a staff to tell me I and all other clients with cold symptoms were from then on in room-based isolation. We would be tested for COVID-19 as soon as possible. Thankfully, yesterday morning, the facility’s nurse came to test us. It wasn’t pleasant, but it was okay. I am however pleased to inform you that I, as well as all other clients, tested negative for coronavirus!!!

It was no fun being in room-based isolation. The hardest part, for me, was the fact that staff had to go to each client’s room for individual support rather than combining care activities, so there was effectively less time for each of us. The staff who had come to inform me of the isolation, said I could press the call button as often as needed. Well, press the call button I could, but that didn’t guarantee a staff would have time to come.

Yesterday, I landed in a rather bad crisis. Initially, I had been really upset and crying and screaming. Then one staff came to inform me that she wasn’t wearing protective clothes and the staff who was, would come “in a while”. That’s a rather unclear comment to make to an autistic person. I freaked out and became destructive.

For those asking why that staff wasn’t wearing protective clothes, staff need to change into different protective clothing when visiting each person suspected of coronavirus separately. They also need to leave the protective clothing at the client’s doorstep. After all, suppose my snot gets onto the staff’s protective clothing and they then go help someone who isn’t showing symptoms. Then that person runs extra risk of contracting COVID-19. You see, over half of the clients did not show symptoms.

Thankfully, the staff in protective clothing came about ten minutes later. She was able to comfort me a little.

Today at around 2:15PM, I heard the day activities staff tell another symptomatic client that he was free to leave his room. I thought I heard her say that “all is well again” or something like that, but I didn’t dare hope I was negative too. Well, I was! The first thing the staff asked when telling me everyone had tested negative, was whether I wanted to go for a walk. Of course I did.

We also had French fries at the facility’s cost to celebrate the good outcome. I was almost writing “positive”. It’s a positive outcome indeed that everyone was negative!

#WeekendCoffeeShare (September 20, 2020)

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It’s Sunday and I want to tell you more about my life right now. For this reason, I’m joining in with #WeekendCoffeeShare. The image above is taken on a bridge over the local channel. I’m not there right now and in fact did not go out for a walk today at all. I did drink coffee. And pure green tea – not the matcha powder type. If you want any, you can grab some. There’s also cold water in the fridge. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that it was my and my husband’s ninth wedding anniversary yesterday. I wasn’t able to visit him though, because I have a cold. At first I wasn’t sure whether just a cold means I need to stay home, but my husband sent me the COVID-19 FAQ from the health authorities that said I had to. Strangely, a staff who has a cold slightly milder than mine, was working this morning anyway.

If we were having coffee, I’d tell you that I did send my husband a card with a photo of me in it. He appreciated it.

If we were having coffee, I’d tell you that I just got interrupted while writing this post by a staff to tell me several other clients show cold symptoms. I already knew this, but it means we’re from now on being cared for in our rooms. We’ll get tested for COVID-19 as soon as possible, maybe today but I don’t think so.

If we were having coffee, I’d share that I am loving learning more about essential oils and soap making. I downloaded three books on the topic of essential oils from Bookshare yesterday. Of course, since I don’t have a microwave or stove in my room, I won’t be able to make soap while we’re still being isolated. However, I do have my essential oil diffuser and oils here, so I can make my own diffuser blends.

If we were having coffee, I would tell you that I requested my staff bring me some coffee cups so that I can make Senseo coffee in my room. I mean, staff do come here to deliver our meals and help us whenever we need it, but they do need to wear protective clothing when entering our rooms. I think that’d be a bit annoying for them if they had to bring me coffee.

What else is new? A lot really, but all seems futile now that we’re in room quarantine. For those who pray or send positive vibes, do get those prayers/healing vibes/etc. coming our way.

What have you been up to lately?

Gratitude List (September 18, 2020) #TToT

Posted on by Astrid

It’s Friday, yay! It’s the Friday there are no day activities, so I spent most of my morning and part of the afternoon in bed. I’m feeling a bit tired and down in the dumps, so I thought I’d do a gratitude list. As always, I’m linking up with Ten Things of Thankful (#TToT).

1. The weather. Early in the week, the temperatures reached over 30 degrees Celsius. I loved being able to wear a skirt for what might be one of the last days this year.

2. Going for walks. I reached my step goal of 10K steps a day three times this week.

3. The scenery. I cannot fully enjoy it, of course, as I’m blind, but I do appreciate it.

Scenery

4. Taking pictures with my phone. I, of course, needed some help taking them and still needed to delete several because my finger was showing. However, I loved the ability to do it. I’m still not planning on following the rule of a picture with every post, as that just won’t work for me.

5. The sensory garden. I spent some time in it on Tuesday afternoon. I loved smelling the rosemary. Sadly, the lavender had already stopped flowering. I also loved listening to the little stream of water.

Sensory Garden

6. Wraps. We made those for lunch on Thursday and I loved them. I had three of them. We had them filled with chicken, lettuce, cucumber and red pesto.

7. Soap making, of course. I loved being inspired to make some soaps again and am planning on making more. One of the staff is retiring next week, so I’ll make one for her.

8. My essential oil diffuser. Okay, its buttons are almost stuck, but not completely, so I can still use it. Last night, when I couldn’t sleep, I diffused a store-bought essential oil blend called Sweet Dreams into it. I am already on the lookout for a new diffuser in case this one stops working altogether. I also have been looking at recipes to make my own blends.

9. Special interests. And people who listen to me perseverating about them. My current special interest is, of course, soap making and aromatherapy. I have been loving telling a new staff, who will be replacing the retiring staff, all about how to make soap, lip balm, essential oil blends and such.

10. My husband, of course. It’s our ninth wedding anniversary tomorrow, so how can I not mention him? I saw him over the week-end and will be seeing him again tomorrow.

What are you grateful for?

#WeekendCoffeeShare (September 6, 2020)

Posted on by Astrid

Welcome to another Sunday and another edition of my #WeekendCoffeeShare. It’s past 8PM here, so I’ve had all my coffee for today. Still, if you’d like a virtual cuppa, that’s fine with me. We also have two flavors of Crystal Clear soft drink, neither of which I like, in the fridge, as well as my favorite Dubbelfrisss: apple and peach. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that I’m still a bit tired. Like I said on Friday, I was sick on Thursday with diarrhea, nausea and a low-grade fever. Thankfully, the fever was gone by Thursday evening and so far hasn’t returned (yes, I did get it checked). However, I’m still very tired. I wasn’t yesterday. It could be a delayed case of sleep deprivation, as Friday night I got only a few hours of sleep.

If we were having coffee, I would share that yesterday, we had another online meeting of the cerebral palsy charity’s chapter in my province. It wasn’t as eye-opening as the one we had in July, but it definitely was interesting. We discussed whether COVID-19 has a more severe impact on CP folk than on the general population – the consensus was that, unless you have co-occurring breathing issues, it doesn’t. Then we discussed fear of suffocating and the reasons for our CP. Some of the participants were oxygen-deprived at birth. Some were not (like me) and some had no idea. From there, we discussed whether it’s useful to have access to your birth-related medical information, since CP occurs before, during or shortly after birth. Overall, I loved connecting to other people. In October, the CP charity will organize some online activities in place of the CP day that would’ve taken place on October 31 if not for the coronavirus crisis.

If we were having coffee, I would tell you that I miss my husband. Like I said on Friday, he couldn’t take the risk of coming by. I really hope we’ll be able to see each other next week.

If we were having coffee, I would tell you that there were quite a few new staff, student staff and people orienting at becoming staff at my home this past week. It was a little chaotic sometimes, because the staff need to explain a lot to these new people.

If we were having coffee, I would share that I had ice cream for dessert yesterday and today. There was hardly any custard and no flavored yoghurt, so I used that as an excuse. I could’ve eaten plain yoghurt of course, but didn’t. I loved the ice cream!

What’s been going on in your life?

Gratitude List (September 4, 2020) #TToT

Posted on by Astrid

Hi all on this fine Friday. How are you doing? I’m a bit tired, but want to write anyway. Today, I’m joining Ten Things of Thankful (#TToT) for a gratitude list. It’s been a while. Here goes.

1. Hamburgers! On Saturday, my husband took me to our house and we had hamburgers for dinner. I loved them, even though they’d come from the freezer.

2. Reading. At the beginning of the week, I did a lot of reading and had a lot of fun with it. I slowed down a bit (or a lot) as the week progressed, but am hoping to get some reading done over the week-end.

3. Steptember. I started the charity physical activity event for cerebral palsy on Tuesday. On both Tuesday and Wednesday, I got my 10K steps in. I also collected more than twice the money I’d hoped for already.

4. Going to the marketplace. On Wednesday, my staff took me to the marketplace. We bought chicken and fish for lunch and I bought a lot of candy. I particularly loved the chicken!

5. Paracetamol and rest. The next day, I was ill with a low-grade fever, nausea and diarrhea. It’s probably because I ate too much stuff on Wednesday. Thankfully, paracetamol helped some and so did resting.

6. Soothing music and blankets. I’ve been loving relaxing in my bed with a calming music playlist on on Spotify. I’ve also been loving being able to have blankets on my bed again without it being too hot.

7. Talking to my husband. He most likely won’t come by this week-end because of my fever, but I loved talking to him nonetheless.

8. Feeling better both physically and mentally. I’m slightly depressed and tired still, but the sickness has gone and I don’t have a fever anymore. That’s good, because otherwise I may’ve needed to be tested for COVID-19.

9. My staff. A staff I can’t really get along with well, is leaving at the end of the month. She’s going for early retirement, so really I should be happy. I wasn’t at first, because I’d gotten it in my head that she was leaving because of me. Thankfully that’s not the reason. I had a meltdown on Wednesday because of it and this staff tried to comfort me.

10. Okay weather. Yesterday, it was raining all day, but I was ill anyway. The rest of the week has been okay: not too cold or windy and mostly dry.

What have you been grateful for lately?

Gratitude List (August 7, 2020) #TToT

Posted on by Astrid

Happy Friday everyone! I still have a lot I want to write about, but it’s soaring hot here and my brain is melting. For this reason, I’m going with a relatively simple post and do a gratitude list. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. Barbecues. My husband bought a mini barbecue last week and we had sausages on it on Saturday. To get some healthy food in us too, my husband served us both a full plate of cherry tomatoes. That was funny.

2. Ice cream. Lots of ice cream! Like I think I said last week, the freezer was still full of ice cream from my birthday and the previous time it was hot. Well, my staff bought even more and so we had ice cream for dessert or as an afternoon treat several days this past week.

3. New shoes. I ordered new walking boots on Monday and they arrived on Wednesday. They are a size bigger than the ones I had before, as those didn’t fit well anymore with my feet swelling. These are pretty cool.

4. Getting motivated to walk again. I signed up for Steptember, a sponsored walking/movement event in support of the cerebral palsy community. At first I wasn’t sure whether to sign up, as I can’t make it to 10K steps every single day of the event. However, my husband encouraged me. I can’t wait to start walking a lot again. Not now though, as it’s incredibly hot, like I said. By the way, I’m not sure there’s an English-language site where you can donate.

5. Liquorice. I bought a bag yesterday and had some tonight. Yes, I still had it unopened by then. Okay, full disclosure, I did also buy a bar of white chocolate and did eat that one, but oh well. Oh, how I loved the black liquorice!

6. Reading time. I actually finished a book this week that I’d started a long time ago. I loved sitting up late at night reading, as it was too hot to sleep.

7. My staff. I was feeling very much on edge for the first few days of the week. On Wednesday, I even had to take a lorazepam again to calm me down. However, all through it, my staff were so very supportive.

8. All the lovely comments I get on here. You all are so special. I’m also so happy to be motivated for writing a lot again this time around.

That’s it for now I guess. What are you grateful for?

A Productive Tuesday

Posted on by Astrid

Hi all, how are you doing? I didn’t write at all yesterday. That is, I wrote a lot in my new private journal. I finally got a subscription to the premium plan of Day One. Day One is an iPhone (and Mac) app for journaling. I discovered how to work it last April. Okay, I’ve had this app for years, but I didn’t know how to insert links, headings, etc. until then. However, even as I found out, I didn’t write a lot. I now do plan on writing in there everyday and have set a reminder to do so. I have three journals: one general one, one for chronicling my journey living as a multiple, and one for prompt-based journaling. I may copy some of those here, but the one I did today, isn’t really suited for this blog.

I also started reading fostering memoirs again. I bought Who Will Love Me Now? by Maggie Hartley. I’m loving it so far, although it’s a sad story.

I also got the littles a little picture book about emotions. I got that one off Bookshare. It’s called ABC of Feelings. I also still have a lot of free bedtime stories in my Apple Books and Kindle libraries.

This morning, I made yet another keychain. It’s for the friend at the other home that’s part of my facility I’ve mentioned before. She regularly gives me cards and, since she has a birthday in August, I thought I’d make her something.

This evening, I talked to a staff who doesn’t work here often. She told me she likes crocheting and I asked her to teach me. We did a little crocheting, but that didn’t really work for me. I then remembered I had a knitting loom too and we tried some loom knitting. I didn’t get far, but I got the first couple rounds done. She may bring a metal loom knitting needle tomorrow, as the one that came with the loom is made of plastic.

We also had a cooking activity this morning, but I didn’t participate in that. A staff made us noodles with chicken and veg. I loved it!

Oh, and I did go for three walks today. They weren’t very long walks, but it was good being outside.

Overall, the day has been relatively productive. I didn’t feel this way at first, because I didn’t feel inspired to blog. However, now that I got to write down all that I did, it’s quite a lot.

Thankful Thursday (July 23, 2020): My Care Team

Posted on by Astrid

Hi everyone! How are you all doing on this warm Thursday evening? I’m doing a lot better than I was earlier this week. I could actually do an early gratitude list, as there’s more than one thing I’m grateful for. A simple list wouldn’t do justice to how huge these gratefuls are though. Let me share. I’m joining in with Thankful Thursday.

First, I still need to update you all on my appt with my nurse practitioner and CPN on Tuesday. It went better than I expected. The outcome is that my nurse practitioner is going to talk to the psychiatrist and see if he can find us a psychologist to do trauma therapy and work on our emotion regulation issues. I don’t remember all the details of the meeting, but at one point, I/someone in me blurted out that we’re in Facebook groups for dissociative disorders. I quickly added that really that’s none of my nurse practitioner’s business, but still we feel a lot of shame surrounding this.

Then on Tuesday evening, a discussion erupted on Twitter about the ISST-D’s guidelines for diagnosing and treating people with dissociative disorders. There’s this article from 2001 that’s still being used to weed out alleged fakers. It uses such things as being open about your DID or trauma to people other than a few close confidants, showing no obvious shame when talking about your trauma, being in support groups for DID, etc., as apparent proof that you’re fake. Now I must say I’m still conflicted about going the actual trauma/DID assessment route, but this did trigger us. However, my support staff are on my side.

We were still recovering from the shame about all this when we heard the main good news I was planning to share here. I got a higher care profile allocated to me by the long-term care funding authority. I still can’t quite believe it, but I’m so happy. The application hadn’t gone out till last week, but this afternoon, my staff got a call that it’d been approved. I’m still waiting on the letter in my government inbox confirming it, but this is really good news. I now have the highest care profile for blind people in the long-term care system.

I was feeling a bit disconnected when I heard the news. Like I said, I still can’t quite believe it, but it’s such amazing news. I’m so glad my staff were so perseverant that they actually applied for this.

Looking forward to hearing what you all are grateful for today.

Yet Another Night-Time Crisis

Posted on by Astrid

Honestly, I don’t know why I want to share this. It’s late Monday evening here and I’m feeling okay’ish. Tomorrow, I’ll have another meeting with my CPN and nurse practitioner to discuss my treatment. This got us worrying a lot last night, so much so that we ended up in crisis.

As I probably said a few weeks ago, my nurse practitioner wants me to try acceptance and commitment therapy. This wasn’t what we’d expected at all and honestly I still don’t understand how he thinks it’s a good fit for my issues. I mean, it’s evidence-based for depression, anxiety and OCD, none of which we deal with to a significant degree.

He was also pretty dismissive of my trauma-related symptoms. Obviously he doesn’t believe we’re plural. Fine by me, though not by some of the others. But somehhow he seemed not to believe I suffer with any type of trauma-related condition at all. At least, he didn’t feel that trauma treatment could or should help us.

This got us worrying last night, as we really have no idea how to advocate for ourself without coming across like a malingerer. It got so bad that we ended up impulsively leaving our room.

After our last case of elopement, the staff decided to lock the door to our home, so I couldn’t go outside. The night staff though hadn’t come to my room to check on me yet. It was 11:10PM. The night shift normally starts at 10:30. Eventually, a substitute night staff came by, saying he had to do one-on-one with another client, that the real night staff was delayed and he was really busy so could I please go back to my room? That upset us greatly, so even though we went back to our room as requested, some of us started self-harming.

About twenty minutes later, the real night staff came to check on us. We were upset, so told her to leave. She left and we cried and self-harmed some more because we were still very upset. Our signaling plan says staff are to stay with us if we’re upset even if we tell them to leave, but I don’t know whether the night staff have access to this plan.

Finally, we left our room again and waited, still panicked, for the night staff to be alerted and to come check on us. She was distraught at seeing us so upset. It makes me feel shame and guilt for making her feel this way. She got us a PRN lorazepam, which calmed us slightly. Still, we didn’t sleep till 2AM.

Now I’m feeling okay again, but I’m still not sure what to do with tomorrow’s appt. I mean, after each crisis, my mental health team say I somehow managed to get out of it. They probably mean it as a compliment, but it doesn’t feel that way. Today, I didn’t even care to call the mental health team. I’m still shifting between wanting to give up mental health treatment altogether and demanding trauma therapy. After all, the reason the appt upset me so much is that it triggered my feelings of being unseen, unheard, unsupported. Then again, maybe we’re not worth being seen, heard or supported.

Gratitude List (June 20, 2020) #TToT

Posted on by Astrid

Hi everyone! How are you all doing? I’m a bit tired, but not ready to go to bed yet. Instead, I’m going to write a gratitude list again. As always, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. Sunshine. The weather was really good over the past week. We had some light rain some days, but most days were sunny and warm.

2. An anti-allergy medication. I have bad eczema that itched like hell for some weeks. I finally went to the doctor on Wednesday and got an antihistamine called desloratadine. It didn’t help at all the first few days, or maybe without the medication the itch would’ve been even worse. In any case, now it does seem to help.

3. An antibiotic ointment. One spot, which the doctor initially thought was the result of an insect sting, got inflamed. Thankfully, with some Fucidin applied topically, the inflammation is a lot less now.

4. The night staff. A few nights ago, the itch was so bad and the inflamed spot so painful that I got really scared. I called for the night staff to apply some oily cream to the eczema. She did this, but I remained very scared. Somehow, I had gotten it in my head that I’d get sepsis from this. I pressed the call button again at around 2:30AM. The night staff was so kind and reassuring.

5. Alternatives to bread. I don’t really care for bread for lunch, at least not when topped with the ordinary kind of things you normally put on bread, such as cheese, peanut butter, etc. Thankfully, we had some lettuce left over from making burritos last week, so I had a salad for lunch one day. Another day, I had noodles.

6. Pancakes. Today, two staff came to our home on a voluntary basis just to bake us pancakes. They were so delicious!

7. Reaching my step goal. I reached over 12K steps (my goal being 10K) on three days this week. Today, I didn’t do so well, so I will still need to get some 5K steps tomorrow to break my weekly record of just under 65K steps.

8. The visiting rules at my care facility likely being relaxed as of next week Friday. The announcement will go onto the facility’s COVID-19 page on Monday.

9. My parents offering to visit me. I called my Mom last Sunday and, as we were discussing the visiting rules, my father asked if they could come too. I initially was a bit hesitant and I’m very nervous, but also excited. They will be visiting me next Friday.

Oh, and now I can’t think of a number 10, but whatever. I’m grateful for being able to express my gratitude. Consider that my tenth thankful. Besides, the number is just a suggestion.

What are you grateful for?