#WeekendCoffeeShare (August 30, 2020)

Hello all. I’m not feeling like writing much right now, but maybe by just starting I’ll get somewhere. I just had a cup of coffee and a soft drink. I think the flavor soft drink I had is gone now, but we might still have coffee. As usual, I’m joining in with #WeekendCoffeeShare. Let’s have some drink – there are probably other soft drinks out in the fridge – and let’s catch up.

If we were having coffee, I would ask you how your weather’s been. Ours is okay. Not too hot, not too cold, not too rainy and not too dry. I’ve been out taking regular walks most days. I don’t think I shared this in this type of post before, but come September, I’ll be starting a sponsored physical activity challenge called Steptember. It’s for the cerebral palsy charity. The idea is to get in 10K steps everyday – or as many days as you can get. I find it quite a challenge – both the sponsoring part and the step goal. However, I’m trying.

As regular readers might know, my Fitbit activity tracker broke down some months ago. I’m now using my iPhone’s built-in movement detector to count my steps. That works okay. I did reach the 10K steps on both Thursday and Friday.

If we were having coffee, I would tell you that I spent most of the week escaping into books. I’m okay, but I do need some escapism right now.

If we were having coffee, I would tell you about the appt with my community psychiatric nurse on Tuesday. It went pretty well. We did go in some depth considering her role as just a nurse. She also told me my nurse practitioner was going to refer me to the specialist center on developmental disorders (autism and ADHD). If the information on the website is correct – which I’m not sure of, as the date of the last update was August 27, 2019 and I’m not sure that’s a typeo -, the wait is several months for an intake interview and then another six months for treatment. I’m not sure that’s just for the inpatient units though, as I know that the workhome is part of the center too. That one has a wait of several years due to it being a living facility.

In any case, before I knew there’s likely a long waiting list, I had all kinds of worries and thoughts about it. I mean, I’m hoping to eventually get trauma treatment and lowering my antipsychotic is still on the agenda too. However, I’m very scared either of these could destabilize me. Then again, I just don’t feel my life right now is all it can be.

If we were having coffee, lastly I would share that I spent the week-end in Lobith. It was good. My husband made us hamburgers with cauliflower and baked potatoes, all out of the freezer. I really didn’t taste that about the cauliflower and the burgers and potatoes were delicious too.

As usual, we spent some time together on the couch and some time apart in the two bedrooms. I have a desk in the master bedroom and my husband has his desk in the other bedroom. That one is also used as our cat’s place though.

Then this afternoon, my mother-in-law came to pick me up and drive me back to Raalte. There, I arrived just about in time for my dinner to still be shoved in the oven.

How have you all been?

Bookish (And Not So Bookish) Thoughts (August 13, 2020)

Hello everyone! How are you doing? It’s still very hot out here. We got some thunder far away in the distance here, but no rain. I hope that will change tonight. Though I’m scared of thunderstorms, I really need it to cool down a bit.

early in the week, I got a lot of reading done. I finished Five Feet Apart by Rachael Lippincott on Tuesday. I haven’t written a review yet and it’s too late now to write one today. Maybe tomorrow. Then nothing quite captured my interest. I tried to get started on The Falling in Love Montage by Ciara Smyth, but it’s incredibly slow-moving right now and I’m not sure that’s the book or the weather or me.

I’m still interested in books. I keep looking at ones to download off Bookshare or even to buy, but I downloaded only two books this past week and didn’t buy any. I finally downloaded Bloom by Kenneth Oppel. It’s the first book in a sciFi series. I usually don’t read sciFi, but this one sounded great. Then again, it’s a little long that I can read it in a few days.

I’m trying to motivate myself for doing anything other than lying in bed or eating, but it’s hard. I hope once we get slightly cooler temperatures, I’ll feel more energized.

Yesterday I was in a bit of a mental crisis. I engaged in some eating disorder behaviors and was rather irritable. Actually, I’ve been irritable all week. Thankfully, I could write down my feelings and now I’m feeling slightly better.

I also spoke to my nurse practitioner this afternoon. Next Tuesday, he will be meeting with someone from the autism team to discuss my treatment. So far, this feels good.

How have you been? What have you been reading?

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.

#WeekendCoffeeShare (July 5, 2020)

Hello all and a happy Sunday evening! Today I’m joining in with #WeekendCoffeeShare. I honestly crave a cup of strong coffee right now, as I’ve only had one cup so far today and it’s past 6PM. Unfortunately, I think all I can get now is decaf. Anyway, how have you been? Grab a cup of decaf, tea or your favorite type of soda and let’s catch up.

If we were having coffee, I would rant about the meeting I had with my nurse practitioner and community psychiatric nurse last Friday. I was very worried about this meeting beforehand. It didn’t go as I expected at all, but that wasn’t a good thing.

The reason we had the meeting was to decide whether I can get trauma treatment, such as EMDR. I voiced my fear that, if I tried EMDR or the like, my parts would come forward and sabotage the therapy. Instead of reassuring me or even asking further questions, my nurse practitioner said he doesn’t believe I have alters because he’s to his knowledge always seen Astrid. He added that everyone has different sides to themself.

For whatever reason, the whole EMDR/trauma therapy thing went out the window too. He wants me to do acceptance and commitment therapy (ACT). He recently trained in this and it seems this is more of a reason for him to want a guinea pig than that he genuinely thinks it’d suit my symptoms. My husband joked that it’s almost like, if I go to the hospital with a broken leg and the orthopedic surgeon isn’t on call, they’d send an oncologist to give me chemo.

If we were having coffee, I would tell you that after the meeting, my staff and I went to get fries at a snackbar. We also drove by a store to get me a large bag of sweets. I had originally intended to get cold tea too. Oh, I forgot to offer you all some of that. It’s basically herbal tea that you put into cold water and then let sit for ten minutes. It’s good.

If we were having coffee, I would also tell you that I spent a night at my husband’s yesterday. It was good. We had roti delivered for dinner.

If we were having coffee, I would tell you that despite the not-so-great weather, I did go for a walk today once I got back to the care facility. There’s a new staff who’s being trained to work on my unit and she took me for a walk. Unfortunately, it seems as though my Fitbit battery won’t charge. Maybe it’s time for a new one.

How have you been?

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?

Tuesday Ramblings

Today I don’t know what I want to write about. I’m struggling a bit. Had a hard session with my community psychiatric nurse this afternoon. During the last bit of it and after it for a while, my leg kept trembling. It generally does when I’m very emotional.

I think a switch of personality happened during the session too. I’m not sure it was a full switch or just passive influence. I feel like a fraud for thinking this really happened.

In other news, I ordered a new iPhone last Saturday and it arrived yesterday. Today, I installed it. I got most things working pretty well. I got the iPhone SE 2020, which is much like the iPhone 8 but with better battery capacity, higher processor speed and a slightly better camera. It does take a little getting used to, particularly because it’s larger and heavier than the old SE I used to have. I can’t imagine that this is really the smallest iPhone currently on the market. It is though. It also feels weird that the home button isn’t actually a button anymore. Thankfully this model still does have a home button though and doesn’t require face ID.

I walked three times today. Unfortunately, I didn’t meet my step goal and, as I’m supposed to go to bed in half an hour or so, I don’t think I will.

I asked my husband to bring my yoga mat and weights when he visits me again. I looked at some fitness blogs yesterday. Though I don’t think I’ll ever be a fitness blogger even as much as I’m a book blogger, these bloggers did inspire me to get active. I googled a basic beginner’s fitness plan. I haven’t started with it yet, but hopefully will soon. I also really hope to be starting yoga again soon.

How are you all doing?

A Twelfth Grade Memory

Last Monday, I already shared some memories from the year 2003. Today, one of the prompts over at Mama’s Losin’ It’s Writer’s Workshop is to share a twelfth grade memory.

My senior year of high school was the year I was supposedly planning on going to university after graduation. I knew this was going to be hard, but my aversion to going to college straight out of high school, didn’t really form. Besides, I had no idea what else I was going to do. I remember one day, August 31, 2004, one of the first few days of the school year. I had already come out as dissociative (multiple personality) on my blog in March, but had only been aware of three alters at the time. That day, Carol, who was up to that moment my assertive helper part, gave up and a new one, who called herself Clarissa, emerged.

I wasn’t aware at the time that what I was experiencing was an actual mental health diagnosis, mind you. A friend of mine had told me about dissociative identity disorder after I first came out in March of 2004, but I was still in denial. Part of the reason is that one criterion of DID is amnesia, which we rarely experience.

In March of 2005, my high school tutor had arranged for me to see a blindness rehabilitation center psychologist. The high school tutor, I must say, read my blog, so he knew about the parts, including Clarissa. He had told the psychologist, who obviously immediately thought of DID. She started to ask me all sorts of questions, all of which I either circumvened or answered negatively to. I knew, after all, that, if I’d gotten the psychologist to think I had DID, I wouldn’t be accepted into the rehabilitation program.

In hindsight, of course, I wish I would’ve been more honest. I knew I didn’t have amnesia or time loss, but I did have most other symptoms of DID, some of which I hadn’t become aware of being abnormal. It took over five more years before I was diagnosed with DID.

In the end, I was accepted into the rehabilitation program. I started on August 22, 2005.

Full disclosure: after being diagnosed with DID in 2010, I lost my diagnosis again in 2013. I am pretty sure I don’t have full-blown DID, but probably do have some dissociative disorder.

Mama’s Losin’ It

Dancing Through Darkness #WotW

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

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

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

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

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

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

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

How was your week?

Word of the Week linky

ZZZ: The Role of Sleep in Self-Care #AtoZChallenge

Welcome to the last post in the #AtoZChallenge. For my letter Z post, I have, each year that I got to it, used ZZZ at least among other things. And yes, it’s totally fitting with the self-care theme too. Sleep is so important! Today I’m going to explain a bit about how you can take better care of your sleep hygiene and how sleeping issues can signal other problems.

Most people have some sleeping issues at times. I have had quite a few nights in which I fell asleep late recently.

When I was a child or teen, anxiety would often keep me awake. Since I didn’t get any help for my anxiety then, the issue grew until I had to use sleeping pills for a while at age 20. When I moved into independent living, my insomnia grew worse and it was one contributing factor to my suicidal crisis three months in. The first medication I got, was again a sleeping pill.

Now let me be very clear: sleeping pills are not to be used long-term. When I got my first script in 2006, my GP said to take it no more than two to three times a week. I was taking sleeping pills for a few months early in my psychiatric hospital stay, but I eventually decided less sleep without pills was better than less sleep with pills. I did take sleeping pills on an as-needed basis for a while after that. However, except in extreme cases of severe mental illness keeping you awake a lot, you ultimately need to find other solutions. So learn to practise proper sleep hygiene. I honestly don’t do too well on this now that I write about it.

For example, one tip is to use your bed for sleeping only. Though I do that, I tend to nap a lot too. I am learning to get up after at most an hour, so that I won’t disrupt my night-time sleep.

Also, it is recommended to turn off electronics at least an hour before bedtime. I’ve heard this is because the blue light of your smartphone or computer screen can stimulate the brain to stay awake. As I always keep my screen curtain on, this isn’t an issue for me and it may not be with dark mode either. However, I do experience that keeping very busy shortly before bedtime keeps my brain awake.

Some people find that hearing some white noise or soft music can help them sleep. I usually turn on calming music when I’m struggling to fall asleep, but eventually turn it back off as it seems to lead to a more restless sleep.

Having a soft toy in bed does help me too. Occasionally, I diffuse some lavender essential oil. There’s no scientific proof that it works, but it may help.

In addition to insomnia, sleeping too much is also an issue. I find that I sleep way too much when I’m depressed. This, of course, in turn worsens my depression.

Lastly, waking up unrefreshed can happen even when you get the right amount of sleep for you. This can be caused by a number of factors, including medications you may be taking or sleep disorders such as sleep apnea. If this happens a lot, it may be time to see your doctor. Then again, doctors can be incredibly dismissive where it comes to fatigue.