#WeekendCoffeeShare (February 21, 2021)

Happy Sunday everyone! I’m rather late joining in with this week’s #WeekendCoffeeShare, but better late than never I’d say. In addition to coffee, today we have two types of soft drinks in the fridge, both partly lemon-flavored and neither of which I like. If you’d prefer cold water, I totally get you. Unfortunately, the water hasn’t been in the fridge that long yet, so it’s not super cold. I hope you enjoy whichever drink you choose anyway. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d ask about your weather. Is yours as crazy as ours? Last week, remember, we had snow and temperatures below freezing. Now, the weather is really spring-like, with the temperature having risen to 17°C here in Raalte and to 19°C in some places in the south of the country. Tomorrow we might get even warmer weather.

If we were having coffee, I’d share I went to Lobith for the week-end. My husband and I got Domino’s pizza yesterday. The one I got, curry kebab, was good, but not as great as I’d expected.

On the way back to Raalte, my husband had a radio station on playing summer hits to celebrate the warm weather. I now have the Venga Boys’ Boom, Boom, Boom stuck in my head and I actually don’t mind. I don’t think anyone who isn’t a child of the nineties can truly appreciate the beauty of this music. 🤣

If we were having coffee, I’d share that I still don’t feel back to my normal self. My magnesium, which I started last week for constipation, has been upped. I’m struggling to decide whether this was a good thing or not. Guess I’ll give it a few more days to see how I do.

I’m also still pretty fatigued and easily overloaded. On Thursday, I landed in a minor crisis due to it. Unfortunately, my community psychiatric nurse didn’t work that day and the substitute couldn’t help me much at all. He offered to ask my CPN to call back on Friday, but I think she may not have received the memo. By then though, I was feeling somewhat more functional.

If we were having coffee, I would tell you that a fellow client and staff cooked spaghetti for us today. It was good.

If we were having coffee, lastly I’d share that I made a lip scrub with my one-on-one staff this evening. I used coconut oil, sugar and vanilla extract. Unfortunately, it didn’t turn out to be the consistency I liked. However, it did make my lips feel soft.

What’s been going on in your life?

#WeekendCoffeeShare (February 13, 2021)

Hi and welcome to another #WeekendCoffeeShare post. I just had my soft drink of Dubbelfrisss and some Pringles for today. However, I can make you a cup of Senseo coffee if you’d like. I can also make you tea. A staff brought me some green tea without additional flavoring earlier this week, which I’m so grateful for. I love this kind of tea! Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that it’s still pretty white outside here. The below picture was taken on Thursday, but not much of the snow has gone yet. That should change tomorrow, as temps are supposed to rise above zero.

A picture of me in the snow

If we were having coffee, I would tell you that I’m happy to report feeling much better than I was earlier in the week. Like I said yesterday, I had some worrying health symptoms on Monday and Tuesday that were probably attributable to constipation (and possibly some stress too). Like I mentioned, the doctor prescribed me magnesium tablets. I’m feeling much better now. Not yet completely normal, but almost so.

If we were having coffee, I’d tell you that I got a wonderful stuffed bear from my husband as an early Valentine’s Day present today. I gave him an airdry clay heart I’d made.

My husband paid me a quick visit at the care facility on his way back from buying a trailer for his car. The trailer is truly huge for one that’s behind a regular VW car!

If we were having coffee, I’d share that my support coordinator told me that I thankfully no longer need to tell the staff several days in advance when my husband is going to pick me up. The reason they so far required this, is my one-on-one support. However, my coordinator and the manager agreed that it’s possible for them to schedule the staffing regardless. This is a huge relief, as especially with COVID and all, it’s hard to plan ahead.

If we were having coffee, I would tell you that today, my one-on-one support staff took me to a farm with my care agency where we could see the horses, goats and rabbits. Unfortunately, they were eating, so they didn’t show me much attention. I didn’t take my phone with me, so no pictures. That will have to come next time.

If we were having coffee, lastly I would tell you I’ve done a lot of reading and book hoarding lately. I will have to do another reading wrap-up soon. Let me say for now that I’m totally inspired to read more SciFi. I totally love the escapism!

That being said, I’d also like to moan (probably for the third or fourth time) about the fact that Amazon doesn’t accept payment methods other than credit cards for their digital products. This is really annoying, as I don’t own a credit card. I really wish I could benefit from their Kindle deals, but apparently Amazon doesn’t want me buying anything there. Okay, I could still buy physical products, but what’s the point? We have Bol.com for that, and I want Kindle books! *Whines.* Okay, I can still get the free ones, but well.

What’s going on in your life?

Gratitude List (February 12, 2021) #TToT

Hi all! It’s freezing cold out here, with temperatures dropping to -18°C tonight or so the weather forecast said. I don’t like winter one bit. Even so, I have so much to be grateful for right now. Let me share. As usual, I’m linking up with Ten Things of Thankful (#TToT).

1. I am so very grateful to be alive. Last Monday night, I started to feel sick and, among other things, experienced chest pain which was unusually severe for me. I can get chest pains when having a panic attack, but this didn’t feel like it. I immediately worried about my heart, since even though I’m far too young especially for a wooman to experience a heart attack, I’m still obese. I felt too scared to press the call button though. Thankfully though, I was able to go to sleep and actually woke up the next morning!

2. I am grateful for my supportive staff, who helped me through my time of feeling out of sorts.

3. I am grateful for a very understanding GP. My staff scheduled a doctor’s appt on Tuesday afternoon because I still wasn’t feeling well. The GP was reassuring without being dismissive.

4. I am grateful for magnesium. The doctor thought, as had I when in my rational mind, that despite the Metamucil, I was still constipated. She switched me to magnesium tablets to be taken twice a day. They are chewable tablets, but thankfully my staff were able to grind them and give them to me in some custard. I’m not sure the magnesium is working yet, but it at least doesn’t make things worse.

5. I am grateful the roads and cycling routes are now snow-free. We had a lot of snow on Sunday and Monday, so there was no point in shoving it. Thankfully though, it stopped snowing by Monday evening.

6. I am grateful I was able to go for some walks today thanks to the snow-free cycling routes. The pavements were still largely covered in snow, but thankfully I live in a quiet neighborhood, so we could walk on the street too.

7. I am grateful for large stroopwafels. These are a kind of waffles filled with butterscotch cream or honey. We usually have the mini ones at the facility and I’m the only one who eats them, because they are a choking hazard to the other residents. Today, we had the large ones.

8. I am grateful for pajamas. A staff, the same one who often brings me stuff (I may’ve mentioned her before), brought me pajamas she no longer wore. I am so grateful, as with these deep freezing temperatures, I’d like to keep warm at night.

9. Speaking of the cold, I’m grateful for central heating that actually works. We had a power outage on Tuesday and this meant the heating was off for the rest of the day and most of Wednesday. I’m so glad it’s back on!

10. I am grateful my husband got through the hectic week at work. He’s a truck driver, so his job was very hard during the snowstorm. I’m so glad I was able to support him and am so grateful he made it home safe each evening.

Really, I could probably go on. I am grateful for cellular Internet (because our WiFi was out during the power outage too). I am grateful for sleep. I am grateful for food. I am grateful today in the European way of writing the date, it’s a palindrome (just had to say that). I am grateful for Day One, my journaling app. I am grateful for the YouVersion Bible app. I am grateful for Jesus. All these could make it onto my gratitude list. Really, I am truly blessed!

What are you grateful for?

Gratitude List (January 29, 2021) #TToT

Hi everyone on this rainy Friday. I didn’t write anything yesterday or on Wednesday, because on Wednesday I was feeling uninspired and yesterday I was in bed all day feeling like crap. Today, I want to write again and I’m joining Ten Things of Thankful (#TToT) for a gratitude list.

1. I am grateful for a beautiful sunset on Monday. I’m also grateful for still having the residual sight to actually enjoy it. By the time I got my camera to take a picture, the sun had already set a little more than it had when I first saw it. Therefore, the actual thing was even more beautiful than the picture.

Sunset

2. I am grateful my husband is feeling better. This week-end, I get to go to our house.

3. I am grateful for still no COVID among my family or close relatives. My mother-in-law had to get tested last week, but thankfully, she was negative.

4. I am grateful I’m feeling slightly better today than I was yesterday. I have been horribly constipated for about a week now and yesterday evening, was nauseated from it. That has thankfully gone.

I am hoping to get a new medication for the constipation later today. I currently take Macrogol, which gives me horrible gas and cramping. The staff called my GP this morning and she’s going to send in some different kind of medication. I forgot to ask what she’s prescribed exactly, but I’ll find out.

5. I am grateful for rest. I was able to sleep pretty well last night despite having been in bed all afternoon yesterday and having gone back to sleep at 8PM. Thankfully, I feel rested now.

6. I am grateful for my sensory cat soft toy. It can be heated in the microwave and then gives off heat and a lavender scent. I had it in bed with me last night.

7. I am grateful for my new AFO or foot brace or whatever it’s called. The original one came on Monday, but it was painful to wear in a way that the physical therapist thought wouldn’t go away with practice. Thankfully, I now have another one. It’s still painful to walk on uneven ground wearing it, but that’s supposed to go away when I get used to the thing.

8. I am grateful for delicious Turkish pizza. A staff brought me some today and I ate it with salad and mayonaise. It was awesome!

9. I am grateful for some DIY inspiration. Today, the staff (same one who brought the pizza) helped me create some air-dry clay figures which I will later hang onto something for decorating my room.

10. I am grateful for books and Netflix shows. I was able to read again on Wednesday and really enjoyed it. I also got a Netflix subscription again last week. Though I’m not sure for how long I’ll keep it, I did enjoy watching some shows.

What are you grateful for?

Gratitude List (October 17, 2020) #TToT

Hello everyone! I hope you’re doing well. I am feeling okay. I’m not sure I’ll continue with the #Blogtober20 prompts, but I will attempt to publish a post everyday anyway. That’s a way of participating in the challenge too. Today, I am writing a gratitude list. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful I am alive. Last week, I was in a major crisis. Though I most likely would’ve survived the attempt at harming myself I was intending on, I am so grateful I didn’t harm myself at all.

2. I am grateful for my staff. They’ve been so nice and helpful lately. They aren’t mental health professionals, but they do a great job of helping me understand why I’m feeling overloaded or anxious.

3. I am grateful that my husband supports me through it all. Like I said last week, I was afraid he’d be frustrated with me for landing in crisis. I am so glad that he didn’t react with irritation at all, even though I’d have understood.

4. I had some delicious treats over the week. On Tuesday, a staff gave us cheesecake for her birthday. There was still some left over on Wednesday too. We also got banana bread then. Then on Friday, we had delicious home-cooked chicken with curry and mayonaise. Today we had homemade chicken and sausage rolls.

5. My mother-in-law visited me on Thursday. We went for a walk and drank a cup of coffee in my room. She also brought me a new bra.

6. I am happy with my new Fitbit Inspire 2. I ordered it on Thursday and it arrived Friday early afternoon. I am loving seeing all my stats in the Fitbit app. For example, yesterday I got 56 minutes in active heartrate zones, all in the fat burning zone of course. I doubt I’ll be able to get into the cardio or peak zone at all.

The tracker itself takes some getting used to, since it has a touch screen, which I can’t see. I keep accidentally turning Do Not Disturb on.

7. I am grateful for relatively good food for dinner. As of last month, I am allowed to choose between a selection of meals for dinner. Before this, I had to turn off foods I didn’t like. This got pretty complicated. For example, I’d say I didn’t like beans because otherwise I’d get them with just potatoes and meat and no sauce. However, turning off beans would turn off chilli too. This led to me occasionally getting just rice, for example. Now I still occasionally get a meal I haven’t picked, but that’s okay too.

8. I am grateful for macrogol. And for apples and other fiber-rich foods. I had been constipated for a bit early in the week, which led to bad bowel cramps. Thankfully, I feel much better now.

9. I am grateful the partial lockdown we’re in right now doesn’t lead to a no-visitors policy in care facilities as of yet. I am grateful I am still allowed to go home to my husband.

10. I am grateful for the ability to be grateful. I started a daily gratitude journal in the app Day One on Wednesday. I did so because I downloaded a free book on gratitude off Amazon and the first exercise is to jot down three things you’re grateful for each evening for a week. It truly helps me so far, as without my gratitude journal to look back on, I may not have been able to get to ten things of thankful.

What have you been grateful for lately?

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

CP Day

Yesterday, I heard about an event on November 3 that I was immediately interested in. It’s the Dutch national CP day organized by BOSK, the country’s charity for people with physical disabilities.

For those not aware, CP is an abbreviation of cerebral palsy. Cerebral palsy is a movement disorder caused by brain damage sustained in utero, during birth or in a child’s first year of life. In my own case, I had a brain bleed shortly after birth.

The thing is though, I was never told that I have CP. My parents just told me I’m clumsy. I did get adaptations early in life, such as a large tricycle. I also had lots of physical therapy. When I was around nine though, my parent discontinued my specialist appointments. Even when I developed scoliosis in adolescence, they didn’t tell me. Scoliosis is a common consequence of hemiplegic (affecting one side of the body only) CP.

Last year, I asked my GP about it and was told I have acquired brain injury. Usually though, when someone acquires their brain injury in the first year of life, it doesn’t “count” as ABI. Instead, diagnoses are then made based on symptoms, such as CP in the case of movement difficulties.

CP is classified in five levels of severity. Obviously, since I don’t even know whether I was diagnosed with CP as a child, I’m not sure of my level either. I would have to guess I’m probably level 1 or 2, which are the mildest levels.

CP is not progressive and yet in some ways, it is. The brain damage that causes it doesn’t get worse, but adults can experience worsening pain, muscle stiffness and symptoms related to overuse and overcompensation.

On the CP event, there’ll be various workshops for adults with CP and parents of CP children. The morning workshop that most appealed to me, is about overload. I’d love to explore this from an a CP perspective rather than an autism perspective.

In the afternoon, the workshop I’m wanting to attend is on nutrition. A dietitian will speak about nutritional guidelines for people with CP. While CP affects movement in the limbs mostly, it can also impact on one’s gastrointestinal tract, because after all these are muscles too. I suffer with both constipation and reflux, which will be discussed.

Obviously, I still feel a little self-conscious about going due to my uncertainty about my diagnosis. Because I am sure I had a brain bleed in infancy, my main concern in thsi respect is that I’m not “bad enough”. My parents at one point tried to get me into a school for the physically impaired and were told (or so ‘ve heard) that I wasn’t disabled enough. Now of course I don’t mind not being that disabled, but then of course I shouldn’t be going to an event like this.