Gratitude List (August 7, 2020) #TToT

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

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

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

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

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?

#WeekendCoffeeShare (June 14, 2020)

Happy Sunday afternoon everyone! I’m joining in with #WeekendCoffeeShare. I think I just ate all of the cheesecake that one of my staff brought for her birthday yesterday and I think the other residents ate all the cream cake she’d brought too. I guess we still have lots of cookies though. Have a cup of coffee and a cookie and let’s catch up.

If we were having coffee, I would rave once more about the smoothie maker a staff brought me on Monday! I have been making smoothies almost everyday since. Yesterday, I made one with frozen blueberries in it for my husband. Its color was a bit grey or so my husband said, but it tasted good. Unfortunately, the staff left the blueberries in the fridge rather than the freezer, so we had to use them all up today.

If we were having coffee, I would tell you how much fun I’ve had with this staff member. She’s returning from long-time sick leave, so is slowly building up her hours again. This means sometimes she just comes as an extra staff to do fun things with us. Like, on Friday, she helped another resident and me make cards for a staff who just earned her carer diploma. We also played a game using a mallet and nails, in which you have to slam wooden blocks into a piece of cork. Normally the wooden figures are really relatively thin, so I don’t have the coordination to do it properly, but these were actually thick blocks.

If we were having coffee, I would tell you that I had a nice phone conversation with my former support coordinator. She was really nice. Like I said on Friday, I’d half assumed she no longer knew who I was, but she definitely still remembered.

Like I said on Friday, she told me my staff have been thinking of applying for more care for me. This did make me feel a little scared, as last year the application for long-term care was really hard.

Yesterday, I reread the application and indeed, some things are more severe now than my staff thought they were back then. This has me feeling all sorts of things. Isn’t care supposed to help me be more independent? Well, the goal for me is stabilization, not development, but yeah. My inner critic is shouting at me, but I try to shut her up.

If we were having coffee, I would tell you that I’ve been experimenting with my new phone’s camera. I’ve been taking random pictures of my room. I haven’t had a staff check them yet, so not sure they’ll ever go on my blog, but oh well.

If we were having coffee, lastly I’d tell you that I got a Netflix subscription again yesterday. I’ll just try it for a bit and then may unsubscribe again, but I wanted to see the Netflix original Diagnosis. This, like the book by that title I’m currently reading, is based on Lisa Sanders’s New York Times Magazine column on hard-to-diagnose medical conditions. It’s very interesting.

What have you been up to lately?

Gratitude List (June 12, 2020) #TToT

It’s Friday again. I’m still feeling pretty off. I have a lot on my mind, but rather than dwelling on it, I’m going to write a gratitude list. I’m joining in with Ten Things of Thankful (#TToT) again.

1. Bookshare. This is a service that provides accessible eBooks to people with print disabilities. It costs $50 per year and my husband just renewed my subscription. I love it! Not all books are available internationally, but enough are that I enjoy the service.

2. Smoothies. A staff gave me a smoothie maker on Monday. I already had a blender, but this one is a bit smaller and comes with its own screw-on drinking bottles. I have been loving making my own smoothies! Particularly, I loved one with apple, cinnamon, almond milk and oatmeal.

3. Tacos. Or Tortillas or whatever these particular ones are called. We made those at day activities yesterday. We filled them with lettuce, chicken and pesto. My husband commented that pesto isn’t supposed to go on a wrap, but whatever.

4. Crafting a bit. The same staff who brought the smoothie maker, came again today and did some crafting with me and another client. We made some type of cards for a staff who earned her carer diploma recently.

5. Lots of steps again. I reached 10K steps each day this week except for today.

6. My former support coordinator. I texted her yesterday, half assuming she had deleted my contact info and wasn’t sure who I was anymore. Not so though. She offered to call me and we spoke for a bit.

7. My current staff. They are absolutely taking my care needs seriously. One thing I found out through my former support coordinator is that they’re considering applying for a higher care profile for me. This has me feel all sorts of things that I can’t describe on my blog in case someone from the funding authorities reads it. Particularly, I was scared this would mean a whole new long-term care assessmment, which would mean a risk of losing my care. My support staff did reassure me though.

8. My community psychiatric nurse. I tried to call her through the mental health agency’s secretary this afternoon, but the secretary had their automated lunch-break message on long past 1PM. I E-mailed my CPN and thankfully she got from my message that I wanted a call despite my not actually having asked her for one. She helped me process some of my feelings.

This is it for now. What are you grateful for?

Mother As Place of Attachment

It’s already been eighteen months since I last wrote about what I read in The Emotionally Absent Mother. Still, the book hasn’t just sat there. I struggled to move on from Mother As Source. The next section is titled Mother As Place of Attachment. Somehow, this is a really hard section. I don’t really know why. I mean, yes, part of the reason I struggle to move on in writing about this book, is that I do it publicly and what if my parents read this? Then again, I don’t really care. I’m in groups on Facebook for childhood emotional neglect and emotional abuse survivors too. Though the member list of private groups isn’t available to non-members, I’m pretty sure they know somehow. Honestly, regarding this, I care more about my husband’s opinion than my parents’.

But there’s something specifically about this section that is hard. I’m not even sure what. Maybe it’s just that I don’t have a lot of early memories of my mother. I attribute this to my father being the homemaker and primary caretaker in our household. But fathers can “mother” too.

The first question asked in the section on your mother as place of attachment, is to rate your sense of connectedness to your mother on a scale of 1 to 10. The next question is how your sense of connectedness evolved over the years.

Well, with my mother, I am generally at a 5. I don’t feel she “gets” me, but we do get along okay. Like I said when discussing mother as source, I don’t feel that I’m made of her, but she isn’t from another planet either. Or maybe she’s from Venus. I mean, we’re not constantly disconnected.

Over the years, my sense of connectedness to my mother has stayed the same. I never quite felt like we had a strong bond, but I didn’t feel totally alienated either.

My father is a different story. We had a strong connection, maybe around 8, when I was a child. Now we’re at a 3 at best. Like I said in my mother as source post, as a child, I saw my father as the embodiment of intelligence, success and well what other positive characteristics are there really? When I got to question his having sole ownership of the truth at around age 15, things started to change. Or did things change earlier on? I’m not sure.

Another question is about bodily contact. This is where I get to question whether the schism occurred earlier than age 15. When I was a young child, my father definitely did give both my sister and me lots of opportunities for bodily contact. I remember when my sister and I were little, my father would wrap us in a towel and drag us to our bedroom. He called this “swordfish” and my sister always asked for “sordsish”.

My mother says that, around age 7 or 8, I stopped wanting to sit in my parents’ lap. From then on, bodily contact like hugging or good-night kisses was very ritualistic. I remember around age 11, being forced to read a certain number of pages in Braille if I wanted a good-night kiss. This at the time felt very distressing. I haven’t studied emotional development except in the context of intellectual disability, so I have really no idea whether it’s normal to still want good-night kisses at that age. I guess not.

As a side note, I did initiate physical contact such as hand-holding with practically every adult until I was at least 12. In my psych eval report from age 11, the ed psych notes that I claim not to need a cane but grab her hand immediately anyway. That first bit was no doubt related to my difficult accepting my blindness, but I don’t think the second bit is fully. Even as an adult, I truly crave physical contact and am a bit indiscriminate in who can give it to me. I mean, I am pretty clear that no male staff can provide me with physical comfort (or help me with personal care). With regards to female staff though (and the entire current staff of my home is female), I do accept physical comfort. I honestly don’t know how my husband feels about this.

PoCoLo
Keep Calm and Carry On Linking Sunday

#WeekendCoffeeShare (April 12, 2020)

Happy Easter Sunday to everyone. I am once again joining in with #WeekendCoffeeShare. I just had some decaf and right after that had the only fizzy drink I like, called “Dubbelfrisss”. It is only slightly fizzy though. Have a drink with me and let’s catch up.

If we were having coffee, I would ask all my fellow #AtoZChallenge participants how you’re doing on the challenge. I am so far doing pretty well. The J and K are always hard letters for me, but as you can tell, I found a word for the letter J. I am almost decided on my letter K post too.

If we were having coffee, I would tell you about all the fun the littles (inner children) have had reading jokes and free stories. We are a member of an E-mail list called Laughing_Place, but rarely even read the E-mails sent out until this past week. We laughed out loud at some of the jokes. As Milou said, the littles also had lots of fun going on a seesaw. We went on it again on Friday.

If we were having coffee, I would tell you that I got a lovely Easter card from a woman who lives at another home in our care facility. We can’t see each other much now that the day center is closed, but I talked to her from across her fence.

If we were having coffee, I would tell you about the blog upgrade I purchased. I have the Premium plan now. As you may be able to tell, I now have my own domain and all WordPress.com ads should be gone. I also got Google Analytics, which I’m having a love/hate relationship with. I’m pretty unsure about all the technical design stuff I can do now, as I’m not tech savvy at all. I’m still not entirely sure this was a wise purchase, but so far I’m not regretting it. I might once the 30-day refund period is over though.

I am thinking about starting my blog’s Facebook page back up. This upgrade also comes with cool social sharing options, so I’d bettter make use of them. I want to get a cover photo for my FB page then though and would love a logo for my blog. Any ideas are greatly appreciated.

If we were having coffee, I would share that I reached my daily step goal certainly on both Thursday and Friday and probably on Wednesday too. However, then my Fitbit wouldn’t cooperate, so it says I got 33 steps only. I in fact got nearly 13K steps on Thursday and nearly 12K on Friday.

If we were having coffee, I would tell you that I made a soap for a staff who’s leaving in a week or so. She is a substitute for someone who’s on maternity leave and that other staffer will return on the 21st. The soap is a butterfly that’s been scented with lavender fragrance oil.

If we were having coffee, lastly I would tell you that there’s a new client at my home. I’m struggling a bit with it, but she seems nice.

What have you been up to lately?

A New Client Came to Our Home

Trigger warning: mentions eating disorder behaviors
So a new client came to our care home yesterday. It was completely unexpected also to the staff. They didn’t hear she was coming till Friday evening. She has some form of brain injury, dementia and she broke her hip, which is why she had to come here. She lived independently until this. She seems okay, but due to her dementia she needs a lot of support. This did upset some of us, particularly Rachelle. It completely wrecked with her sense of structure and also the trust she had in the staff.

Today we had an Easter dinner. We had had the choice between pizza or fries. We chose pizza, but weren’t sure about it after all, as everyone else got fries. This further upset us, particularly Agnes. Agnes was feeling off, so she wanted to binge, but the staff prevented her, saying she was full already. This led her to a teenage tantrum.

Then once we talked to her about the importance of sticking to a somewhat healthy diet, she wanted to purge. Thankfully we were able to talk her out of it. Then however Rachelle took over again, with me (Eleanor) being present too. We were able to articulate our feelings to some extent.

Part of the problem is Agnes wants to be independent and make her own choices, including unhealthy ones, but Rachelle really needs more support than we’re currently getting. Thisdispute between them was also triggered by the new client getting pracctically one-on-one support all day, while we were in our room by ourself a lot. There is an extra staffer for the new woman, but we still feel like a burden.

We talked to our assigned staff about maybe making some form of communication cards that don’t require speech, so that Rachelle (and others) can ask for help when we can’t quite talk. We also talked about us getting a more structured daily routine particularly on week-ends.

We’re not sure this will help, but we’ll see.

Eleanor with some others chiming in here and there