An Unexpectedly Productive Monday

Today, I’m feeling better than I was expecting when I woke up this morning. I mean, I didn’t sleep well last night. I was ruminating a lot into the wee hours of the night and then kept being woken by a fellow client’s screams. This client can’t speak or use any form of alternative augmentative communication. The staff think he was in pain, but they couldn’t figure out what was bothering him. Thankfully, he seems calmer now. I hope he actually is.

I had a pretty productive day today. In the morning, I went to my GP. I had to discuss how I’m doing with respect to my abdominal discomfort now that I’m on one magnesium tablet a day. Together, we decided to leave it at this for now. I’m not totally well, but I’m as well as possible.

I also asked him to do a breast exam, because I’ve been feeling some discomfort. I felt okay with a male examining my breasts, after all he’s a doctor. Thankfully, he found no abnormalities, but he referred me for a mammogram just in case anyway. It’s been scheduled for this coming Thursday, which I consider really early given the state of healthcare and the pandemic and all.

In the afternoon, I decided to sort through my polymer clay stash to throw out the clay I can no longer work with. I mean, I know all clay can be made workable if conditioned enough, but I just feel that it’s too much work for me given how totally crumbly some of them are and how some of them literally get shredded by my pasta machine.

In the evening, I went for a walk, made another polymer clay unicorn and decorated my room for Christmas. Yes, I’m early for someone from the Netherlands, as most people don’t start decorating until after St. Nicholas, but I won’t be celebrating that anyway.

How was your day?

Desperate Yet Determined #WotW

Hi everyone. What a week it’s been. I’ve been swinging between despair and determination, sometimes experiencing both at the same time. Let me share.

Last week, I was in a very depressive, dysregulated, suicidal state. I finally managed to tell my assigned home staff about the nature of the “monster” in me, ie. my suicidal thoughts. She decided to E-mail the current behavior specialist assigned to my care home asking her for help in finding me someone to talk to about this. I mean, I have my nurse practitioner at mental health, but I cannot seem to get it through to him how I’m truly feeling.

I also E-mailed my nurse practitioner, only to get a response saying we’ll talk about it on the 23rd. Well, that was the final straw for me and I’ve pretty much decided I’ve had it with treatment with him. I mean, I know I should have called the team, but it’s not like this is the first time he doesn’t pick up on my signals, be it in E-mails, on the phone or even face-to-face. Our talks have pretty much been meaningless forever. Honestly, the only thing he’s helped me with is getting the right medication, the topiramate, for my nightmares.

This week, I’ve been swung back and forth between the thought that truly there is no hope for me and the thought that, maybe, if I stand my ground firmly enough, I will be able to access the right help somewhere.

I’ve also been ruminating over those two years I’ve been in treatment with my current mental health team. My nurse practitioner told me a year ago that “we could search half the country for a suitable therapist but that wouldn’t make sense”, adding that we’re stuck with each other (as if it was something he hadn’t just decided on himself). Half a year earlier, he wanted to refer me to the specialist autism center, but that got shoved off the table for a reason I was never told. I have been saying for all of the two years that I’ve been in treatment with this team that there are two things I want to work on: my trauma-related symptoms and seeing if I can lower my antipsychotic. Neither has even remotely been started yet. After two years, I’m done.

I am not so naive to think my nurse practitioner is actually going to give in and actually help me find someone else this time around. I have a tiny bit of hope focused on the behavior specialist for my care home, but not much. Even so, I’m pretty sure I can get by with no help from any mental health professionals at all. It won’t be easy on me or my staff, and that’s one reason my staff might pressure me to stick with mental health. Thankfully, so far they don’t.

On the physical health front, I’ve also been swung back and forth between despair and determination. After thinking kind of wishfully that my abdominal discomfort was almost gone last week, it returned on Saturday and has been pretty bad all of this week. Nonetheless, my GP wants me to stick to my current regimen of one magnesium tablet (laxative) per day for two more weeks and have the staff call back to evaluate then. I was pretty upset yesterday when I heard this. Now I’m more resigned to the idea that there’s no hope for improvement of my symptoms.

Overall, right now, despair is taking over, but thankfully I’m not actively suicidal right now. There must be some tiny flame of determination in me somewhere.

How was your week?

Word of the Week linky

Gratitude List (November 12, 2021) #TToT

Hi everyone. I’ve really been struggling lately, which is one reason I haven’t written much. To get myself out of my rut, I thought I’d share a gratitude list. As usual, I’m joining Ten Things of Thankful or #TToT for short. Here goes.

1. I am grateful for salami pizza. We ordered delivery from the local Italian restaurant on Sunday and I had this.

2. I am grateful for the night staff who helped me calm even the slightest bit on Sunday night when I was experiencing severe mood dysregulation.

3. I am grateful for a new book to immerse myself into. I’m reading a collection of short, autobiographical stories from a Dutch GP.

4. I am grateful for relatively good weather again over the past week. We’ve hardly had any rain and, though the temperature was quite low for my liking, at least it wasn’t freezing.

5. I am grateful my abdominal discomfort seems almost gone. I think I’ve finally reached the right dosage of magnesium. We aren’t to evaluate it with my GP until sometime next week though. Fingers crossed.

6. I am grateful my assigned home staff has returned to work part-time again. Like I mentioned before, she had been on sick leave since late September, but she seems to be recovering. She worked part of my day activities shift on Tuesday and my evening one-on-one today.

7. I am grateful for white chocolate. I bought myself a chocolate bar yesterday. I have it in my locked kitchen cupboard so that I can’t consume it all at once, but that way I do enjoy it more.

8. I am grateful for new essential oils. I ordered cypress, mandarin and lavender. Lavender, I’d had before but had used up. The others, I’d never used before. I did have to throw out a few others that I either didn’t like or that had expired, but that’s okay.

9. I am grateful I finished my polymer clay owl. Some people think it looks more like a turkey, but oh well. I’ll write a separate post on how I made it with more pictures later.

10. I am grateful for my staff. I have been extremely depressed lately and have been convinced that they should and will abandon me. While I heard from the manager yesterday that three staff are indeed leaving my care home, this apparently has nothing to do with me and the staff I have the best relationship with, aren’t leaving (yet).

What are you grateful for?

#WeekendCoffeeShare (October 24, 2021)

Hi everyone. It’s really sunny out this Sunday afternoon! How about you join me for #WeekendCoffeeShare. I had quite a lot of coffee so far today, as I went out to McDonald’s (well, through the drive-through) with my husband for lunch and had coffee there. It was better than the coffee I had at Subway last week. Then when I came back to the care facility, I had a cup of coffee again. If you’d like a cup of it too, I’m pretty sure there’s still some left, as my staff said her colleague had just made a fresh pot. Let’s have a cup of coffee and let’s catch up.

If we were having coffee, I’d almost invite you to the balcony. It’s sunny, after all, but quite cold. Besides, the balcony is covered in fallen leaves. So I guess we’ll sit indoors after all.

If we were having coffee, I’d share that I managed to get in 12.5K steps yesterday. That’s a huge win, as I had thought my physical condition was declining slightly. Apparently not.

I also went on the elliptical for half an hour on Friday and am planning to go onto it for another 30 minutes later this evening.

If we were having coffee, I would tell you that all this is slightly comforting in light of my probable IBS symptoms and the upcoming abdominal X-ray. I mean, if it’s something very serious, I guess I’d have other symptoms, such as unexpected weight loss or declining physical fitness. Please all still pray for me that the X-rays will show something easily treatable.

If we were having coffee, I would share that my husband bought a new car. Well, he’s going to exchange it for our current Volkswagen Golf on Wednesday. It’s a Daihatsu Cuore, a very small car. His VW is still in relatively good shape, but both of us wanted a cheaper car with respect to gas usage, insurance and tax. With the deal he got, my husband says he’ll have saved enough on these to cover the cost of buying the Cuore within the year. I must say I feel a lot better about this car than I felt back when my husband bought the VW.

If we were having coffee, lastly I would share that I woke up after a nightmare early this morning. It wasn’t yet time for my one-on-one to arrive, so the morning staff helped me put on my music pillow and settle back to bed. I thankfully slept well for about an hour and a half after that. I am really hoping this means that the topiramate is working. I mean, my nightmares aren’t your standard scary dreams and as far as I’m aware, topiramate doesn’t suppress REM sleep altogether, but it does seem to make it easier to let go of anxiety-inducing dreams.

How have you been?

Gratitude List (October 22, 2021) #TToT

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?

Five Trendy Foods I Hate #5Things

Okay, I’m a day late with my contribution to this week’s Five Things. This week’s theme is food fads you hate. Like I said a few weeks ago, I got “only” eleven points on the picky eater test my husband had found online. Still, I’m quite a picky eater. I also don’t really know food trends, so some of these might not actually be food fads.

1. Mash. Okay, firstly, this isn’t really a trend. Mashed potato has been a popular food for probably as long as potatoes have been affordable here in the Netherlands and that’s as long as I and my parents and probably my grandparents too could remember. Mash isn’t even a holiday food; I bet that the average Dutch family eats some variety of it several times a week. Here at the care facility, I get mashed potatoes about four times a week if I don’t put mash on my “dislikes” list.

Speaking of the dislikes list though, I honestly can’t stand most things passing for meals here. I mean, seriously, cooked but otherwise not-seasoned beans as a vegetable?! And if you put those on your dislikes list, you also won’t get chili con carne. Thankfully, now I and several other clients get to pick our meals from a menu.

2. Celery. Okay, I will eat a little bit of it in a salad or in my mother-in-law’s lasagne. Other than that, I flat out refuse to eat it. My care facility’s meal service considers boiled celery a valid vegetable on its own too.

3. Ginger. Not sure this is a food trend anymore, but I’m pretty sure it was claimed to be some type of superfood some years ago. I’ve tried it, but honestly it just isn’t for me.

4. Raw cocoa. I can’t even stand dark chocolate, so I honestly can’t imagine liking this.

5. Sugar-free candy. This isn’t necessarily because I don’t like its taste, but because sorbitol and manitol both set off my IBS pretty bad.

Okay, this was harder than I thought it would be. After all, I do like most acclaimed superfoods, such as chia seeds, almond milk and acai. That being said, if I had to list five foods in general that I dislike, this’d be a list of food groups.

What about you? What food fads do you dislike?

Mint Essential Oils #AtoZChallenge

Hello and welcome to my letter M post in the #AtoZChallenge. My theme for the challenge is aromatherapy and today, I’ll be talking about minty essential oils. The most well-known oils in this category are peppermint and spearmint. I don’t own spearmint, though I want to someday. I do own peppermint essential oil and also field mint (also known as corn mint), which is very similar.

Peppermint essential oil is far stronger than most other essential oils. Though it is generally safe to use peppermint essential oil in massage and skincare products, you should very much dilute it into a carrier oil. I, for one, prefer to use at most 0.2% peppermint essential oil. This means two drops of essential oil in a 100ml bottle of carrier oil. Don’t use peppermint essential oil in a bath or in whole-body massages. Field mint is somewhat safer to use.

Besides concentrated peppermint essential oil, there also are peppermint extracts, which are less concentrated. You can also buy enteric-coated capsules, which contain a tiny amount of peppermint oil in a special coating.

Peppermint can be used to lessen the symptoms of irritable bowel syndrome (IBS). The menthol in peppermint supposedly helps block calcium from moving across the intestinal membrane, thereby lessening symptoms of intestinal spasming, which are the main cause of IBS-related discomfort and pain.

Peppermint essential oil, when inhaled, may also be able to reduce indigestion and nausea. However, it may actually contribute to reflux, so do consult your doctor when you experience persistent heartburn or acid reflux.

Minty essential oils, along with eucalyptus essential oil, are well-known for their refreshing properties and can be used to relieve cold symptoms.

Spearmint essential oil, unlike peppermint, is safe to use on children. It is also more skin-safe than peppermint. It doesn’t have as strong an aroma, but still is refreshing. It can be used to stimulate the senses and clear the mind.

Spearmint essential oil blends well with many different oils, including citrus oils such as bergamot and orange, lavender, ylang ylang, etc. It has a unique combination of uplifting and stress-reducing properties.

Peppermint oil blends well with oils like lemon and eucalyptus. It is more stimulating and energizing than spearmint.

Do you like the smell of peppermint? If you’ve tried spearmint, do you like it?

A Mixed Monday

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten too much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

#WeekendCoffeeShare (December 29, 2018)

Oh my, it’s Saturday again! This means it’s been nearly a week since I last wrote a blog post. I really wanted to write more, but I’ve been feeling badly uninspired. Today, a few ideas are floating through my mind, including several blog challenges. However, I’m finding that I struggle to put much effort into a blog post. For this reason, I’m settling on a #WeekendCoffeeShare post.

If we were having coffee, I’d ask you how your holidays have been. Mine have been good but exhausting. I went to my parents for Christmas Eve and stayed there overnight. It was okay. We managed to avoid discussing my life, which is a good thing, since my parents are very disappointed in how I live my life. Like, my mother can feign a bit of interest in my activities at the day center for severely intellectually disabled people I attend. My father can’t even pretend to be interested. I’m fine with it, sort of. At least by avoiding talking about me, we don’t risk ending up in a fight. It was a much more relaxed visit than the ones at which I’ve tried to talk about my life.

If we were having coffee, I’d share about the gourmet dinner we had on boxing day at my in-laws. It was fun and tasty, but I did end up with a lot of IBS symptoms for a few days following it.

I’d also share about my plans for buying a Macbook. I did share this with my parents and sister on Christmas Eve. I’d not even told my husband before, because Macbooks are rather expensive and I was afraid he wouldn’t approve. Not that he has to. Buying a Macbook would mean I could use its built-in screen reader and no longer depend on JAWS, the main screen reader for Windows, which costs like 1000 euros and hasn’t been improved much sinnce it was first released. In theory, I could get JAWS paid for by health insurance as a needed adaptation, but I’ve been waiting for my insurer’s approval for nearly a year. My husband was in fact pretty supportive. We found an older Macbook Air model for a reasonable price. I can’t wait to go to the store to take a look at it.

I don’t have any plans for the week-end. Besides resting, that is. I’ll probably just chill out with some TV shows or books. My husband’s oldest sister is going to visit us for new year’s eve. That should be fun.

#WeekendCoffeeShare (August 11, 2018)

I did the #WeekendCoffeeShare for a while on my other blog, but stopped eventually. Now that I’m getting this blog up and running, I think I’ll participate again. I’m currently having a cup of organic green tea with my mother-in-law, but if you’d like coffee, that’s fine with me too.

If we were having coffee, I’d ask you how you’re doing. I hope you’re all doing as well as possible. I hope the weather is good where you are. It is here. For me, that means not soaring hot anymore but not chilly either.

If we were having coffee, I’d share that I started new day activities last Monday. My first week as a whole was as good as my first day. I have been doing a variety of different activities, both indoors and outdoors.

If we were having coffee, I’d share that I’m still enjoying this blogging adventure. It is a challenge to blog everyday, but so far I’m meeting that challenge head on.

If we were having coffee, I’d share that I am considering exploring a low-FODMAP diet for irritalbe bowel syndrome. I discussed this with my mother-in-law, who is trying this too. It is pretty compliicated, particularly the elimination phase, but it may be worth trying. I was provisionally diagnosed with IBS in 2013 after a colonoscopy, bloodwork and a stool sample all came back normal, even though I’m not a classic case. I’m already pretty sure artificial sweeteners trigger my IBS. I consume those in relatively large quantities, as I tend to believe they’re an excuse to consume sweetness without gaining weight. Thankfully, with low-FODMAP, you don’t need to stop eating products that may be triggering altogether. IBS, after all, is painful and annoying, but it is not dangerous.

If we were having coffee, I’d share that I’m enjoying the day at my in-laws. My husband is visiting his grandma, who had a stroke a few weeks back. Unfortunately, due to her cognitive decline, she probably won’t recognize me, so I am not going with him. I’m so happy that I can stay at his parents’, because I don’t like being alone all evening. My father-in-law made a delicious pizza for dinner.

So what have you all been up to lately?