Gratitude List (November 21, 2020) #TToT

It’s been forever since I last did a gratitude list. I just checked and it’s been five weeks. These weeks have been incredibly hard. I am really struggling to stay positive. I am going to try to come up with some gratefuls anyway. As usual, I’m joining in with #TToT. I’m typing this post on my iPhone, which I hardly ever do nowadays, so sorry for any typing glitches.

1. My husband! Even with our not living together and only talking on the phone most days, he tells me many times a day that he loves me. I am struggling to feel such a powerful emotion due to my current state of depression, but I’m trying to love him back.

2. My faith. My husband, who I always thought was a strong atheist since leaving theology school, has taken a renewed interest in Christianity and this has encouraged me. Today, he recommended a book called You Are Beloved. I am a very progressive believer, but I’ll definitely give this book a try.

3. My staff. They have been so kind to me despite my challenging behavior.

4. My community psychiatric nurse. She has been very helpful.

5. Pizza. Okay, on to the superficial stuff. My husband and I ordered a delicious pizza today. No, not from Domino’s and I must say this one is better!

6. Cheesecake. Two of my fellow clients had their birthdays this past week and another client got to help the staff make cheesecake.

7. Homemade noodles. That same client made those for us on Monday. He used minced meat instead of chicken, but still it was so delicious.

8. Lots of walking. So far this week, I nearly surpassed my step record from last week. I didn’t get in as many minutes in active heartrate zones, but that’s okay.

9. The ability to write and blog. I am not writing as much as I’d like, but at least I’m still writing.

10. A good night’s sleep last night. And yay for no nightmares that I can remember!

What have you been grateful for?

#WeekendCoffeeShare (November 15, 2020)

Hi everyone! How are you doing? Today I’m joining in with #WeekendCoffeeShare. I just had my afternoon coffee, but there’s still plenty left for you all. We also have various flavors of tea and there’s cold water in the fridge I think. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was a rather rough one. I am already feeling slightly better now though. I’m still struggling to keep busy when I’m alone, but it’s okay.

If we were having coffee, I would tell you that the weather is pretty mild for november. It’s raining some of the time, but it’s also sunny some of the time and it’s pretty warm for this time of the year, roughly 15°C.

If we were having coffee, I would be proud to tell you that I got in over 65K steps this week so far. That’s a record! I’m probably still going for another walk this evening, so I may break my active heartrate zone minutes record of last week according to my Fitbit too.

If we were having coffee, I would tell you that I’m so immensely grateful for the extra supports my staff put in place for me. Like I mentioned earlier in the week, I was extremely depressed earlier and was seeing no way I could manage at this care home or in this world as a whole for that matter. Thankfully, I got some one-on-one support in the evenings, which are the hardest for me.

I did feel some pressure when a staff said she hoped that in a few weeks, I would not need as much support. This caused me some considerable anxiety, as I worried I’d be kicked out of this home if I didn’t improve in a few weeks. The staff didn’t mean it that way though.

If we were having coffee, lastly I would tell you that my husband came by yesterday. We drove for a bit and then went for a short nature walk. My husband had also brought me some apple pie his father had baked for his birthday. I did struggle to eat it properly whilst in the car, which I felt intense shame about. My husband was okay with it though.

Early November 2020 Health and Wellness Update

Like I said a couple of weeks ago, I had a physical health check-up at the mental health agency. That wasn’t good. That is, my blood pressure was high and so was my weight. Even though the nurse said I might not have gained any weight compared to the last time I stepped onto the scales, as each scale is different, I was pretty alarmed. So was my husband. He asked whether I could be put on a diet. Well, no-one can force me, but I did agree on a food plan with the staff.

Now we’re a little over two weeks on. I didn’t get my blood pressure taken today, as my GP recommended we wait three months and then check it everyday for a week. I did get weighed in though. And guess what? I lost 1kg compared to the last time I stepped onto this scale in early September and 3kg compared to the health check. Only two more kilograms to go and I’m no longer obese.

Overall, I’m doing okay sticking to the food plan. I eat bread rather than crunchy muesli for breakfast, make sure I eat enough veggies and fruit and drink at least 1.5 liters of water a day. That plus coffee, which contrary to common belief does hydrate the body to an extent, and occasionally green tea. I do usually eat a cookie with each coffee break, while my food plan says I can only have a cookie with my evening coffee. However, each day that I skip a cookie, I’m proud of myself for making a healthy food choice. Same each morning with breakfast, which is a real struggle, as I’m not a bread person.

I also make sure I get in enough physical activity. Last week, I felt really lazy, but, according to my Fitbit, still got more than the recommended 150 weekly minutes in active heartrate zones. This week, so far, I got 341. I broke my personal step count record yesterday by getting in over 16K steps. I don’t go on the elliptical as often as I’d like, but that’s because after walking two to three times a day, my legs are often tired.

In other health-related news, I talked to my CPN from mental health about sleep on Tuesday. I usually get enough sleep, but I have very vivid nightmares most nights. They aren’t your standard monster-chasing-me nightmares. In fact, most revolve around my sense of safety here at the care facility. My CPN may talk to my nurse practitioner about it. She said I might benefit from medication to help with this. Thankfully though, having discussed the issue has already calmed things down a bit.

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

Thankful Thursday (May 14, 2020): Dancing!

I’ve been feeling kind of depressed lately. Or rather, less non-depressed than I was over the past month. I’m not sure how “normal” feels, being that I’ve struggled with depression off and on (and mostly on) since childhood. I was finally thinking I could be inspired and motivated for a while, but that while has stopped now I think. I hope my creativity and motivation return soon.

When I shared about my mood on an E-mail support list yesterday, some people responded by saying I could focus my attention on what I can do rather than what I can’t. Like, even a day without blogging mojo was frustrating me, even though in other areas, I’m pretty much my normal self. I’m still honestly pretty active. I’m not sleeping 15 hours a day. Okay, I slept nearly 12 hours last night, but I barely got eight the nights before. So as sort of a pick-me-up, I’m joining in with Thankful Thursday and the reason I’m thankful today is my level of physical activity.

You see, I reached my goal of 10K steps today! If this doesn’t prove that I’m fine, I don’t know what does. I went for two longer walks during the day and a short walk in the evening. I’ve also been “dancing” some. By this I mean walking in place and swinging my arms while music is playing. I have absolutely no sense of rhythm, but so what? I put the Cardio playlist on Spotify on and just moved. I honestly really loved it.

Besides getting me active, this helped me discover new music. You know, I normally only listen to classic country and some other oldie stuff. I can’t stand most of the workout playlists on Spotify, but Cardio was an exception. I loved it! Here’s one of the songs I listened to several times.

Do you like to dance?

#WeekendCoffeeShare (September 29, 2019)

Hi everyone, how are you doing? I have had a for me incredible amount of coffee for a Sunday today, so am feeling pretty energized despite it being nearly 9PM here. This evening though, I chose two cups of green tea and two apple and peach flavored soft drinks. Anyway, I’m joining in with #WeekendCoffeeShare again.

If we were having coffee (or green tea or a soft drink), I’d share that my transition into the care facility went relatively smoothly. I moved in on Monday. I do miss my husband, obviously, but am mostly enjoying my time being here. I feel, overall, a lot more relaxed than I did when still living semi-independently.

If we were having coffee, I’d share that the house-buying process was finalized last Wednesday. As I said in my previous post, the paperwork was somewhat stressful as I couldn’t read or sign the agreements due to being blind. That got sorted though thanks to a very accommodating solicitor.

If we were having coffee, I’d share that my husband has been very busy doing odd jobs in the new house. I muted the house-related WhatsApp group because, not being there, I couldn’t conceptualize what all was being done. However, I guess in a few weeks, I’ll like it in the new house. I saw it for the first time on Wednesday before we saw the solicitor and it’s larger than I expected.

If we were having coffee, I’d share that I’m excited for my husband to come over here on Thursday. He originally said he’d come by either MOnday or Friday, so since I hadn’t heard a thing yet, I assumed he was coming on Friday. Today he said though that, after the final inspection and handing in the keys to our old house, he’d travel my way. He said we could have lunch at an Australian restaurant that’s in a nearby town.

If we were having coffee, I’d share that I am totally in love with all the sensory equipment at both the day center and the care home. At the day center, there’s a snoezelen® room. I spent some time on Thursday lying next to the bubble unit and on Friday lying on the waterbed. At the home, there’s a room with a rocking lounger. The staff also retrieved a kind of teeter board from another client’s room. That client has a swinging chair that’s hers but I was allowed to sit in it in her room for a bit.

If we were having coffee, I’d share that the care facility food is pretty good. I got mashed potatoes twice this week, which is one of only a few things I truly can’t stand, but they were able to swap my meal with someone else who didn’t mind mashed potatoes. My husband would say I’m a pretty picky eater, as I also had instant noodles one day when we actually got spaghetti carbonara. I think I can make myself eat that though and I won’t put it on my dislike list unless it’s very easy to do so.

If we were having coffee, lastly I’d share that I did have a relatively good amount of physical activity this past week. I don’t have my elliptical yet, as my husband will be delivering it on Thursday, but I did go for some walks. I don’t use my Fitbit right now, as I can’t find its charger and I don’t want to be discouraged by it, but I do feel pretty good about my activity level. I am eating pretty well. Now I guess I do still get too many calories for the amount of exercise I get, but I will hopefully soon find ways around that. At least I haven’t really craved binge food much. Finally, I also made time to do mindfulness meditations most days.

How was your week?

CP Conference Last Saturday

So I attended the Netherlands’ national conference day on cerebral palsy on Saturday. Before I went, i was incredibly scared. Would I be able to connect to other people or would I be left on the sidelines all day? Would there be people willing to help me navigate the school building in which the conference was being organized? Would I arrive on time? But my main worry was related to my own diagnosis of cerebral palsy, or rather the lack thereof. You see, I was never told that I have CP by my parents and was too young to understand medical jargon by the time they stopped taking me to specialists. Maybe my parents didn’t even know, as doctors do not always clearly communicate and my parents were mostly looking for reassurance.

My GP also was a bit vague when I asked him last year, citing a probably relatively recent letter saying that I had acquired brain injury. Now I do happen to know that doctors disagree on whether brain injury acquired shortly after birth counts as ABI or a diagnosis of CP or the like should be made instead. So I’m a member of Facebook groups for both CP and ABI. However, ABI is a diagnosis regardless of symptoms and CP requires mobility impairments. I wonder therefore, are my mobility impairments severe enough to count?

I arrived at the school forty minutes before the doors were officially open, but someone took me to a chair anyway and gave me a cup of coffee. Soon, a man I’d been talking to via Facebook messenger arrived too and we sat and chatted some.

Gradually, other people arrived and it was soon time for the official opening speech. This was partly about Steptember, a movement challenge to collect money for research on CP.

Then, a neuropsychology professor spoke about the effects of movement and mental or physical effort on cognition in people with and without CP. It turns out that effort, whether that be mental or physical, strengthens brain connections to the frontal and parietal cortex, which are responsible for higher-order cognitive functions such as planning, organizing and impulse control. He also briefly touched on the effects of music, which can also help strengthen these connections. In short, moving and exerting ourselves as much as we can within the limits of our CP helps our cognitive functions. Of course, past age 30, these brain areas no longer grow and actually decline, but still exerting yourself enables you to learn more effectively regardless of your age.

After this, you could choose to follow a workshop session. The one I followed was on overload. This was a bit of a chaotic workshop, as the presenter allowed for questions while presenting. I am quite familiar with overload, as a person with autism, but I loved to explore it from a CP perspective. I mean, physically I do have some more limitations than those without CP. As a result, walking may give me energy, but it also costs me energy more so than it does non-disabled people. This was rather interesting, because I often tend to sometimes give everything and more of myself physically and other times I tend not to bother. Something the presenter said that really struck a chord was that mental overload can be counteracted by physical activity and vice versa.

In the afternoon, we could also pick a workshop to follow. The one I chose was on nutrition. A registered dietitian had developed nutritional guidelines for children and adults with CP. Topics that were discussed included underweight and overweight. The presenter said that, as a general rule, people with CP need fewer calories than those without CP. The reason is that, even though our movement costs more energy and hence burns more calories, we tend not to move as much.

Another topic that was discussed was swallowing difficulties. Did you know that up to 99% of people with CP, even those with mild CP, have swallowing issues? I didn’t. This was so validating, because I happen to have some rather significant swallowing issues.

Other topics of discussion included reflux, constipation and bone development. There is little research into these, as particularly constipation and osteoporosis are common within the general population anyway.

Overall, I loved this day. It was also very validating. Not only did no-one say I don’t look like someone with CP, but I actually met several people who are at least as mildly affecte as I am.

Confessions of a New Mummy