No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.

#WeekendCoffeeShare (February 22, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare once again. It’s almost 10:30PM here, so no coffee for me. Since this is a virtual get-together, you’re free to grab your own beverage of choice. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place with freezing night-time temps and daytime highs hardly above freezing early in the week, then a daytime high of 16°C yesterday. Today the daytime high was 12°C, which is still quite warm for late February. Unfortunately, it was raining most of the day today.

If we were having coffee, then I’d share that this week was a mixed bag mental health-wise. I’ve mostly been quite tired, but the bloodwork I had done on Monday came back all clear. I wish there was something simple that could explain my daytime tiredness, but I’m pretty sure that if I pressure the doctor to do more testing, they’ll just say I shouldn’t give in to fatigue, as I was told the last few times (many years ago) that I complained of being too tired.

Yesterday was a good day, but today I felt a bit irritable and overloaded.

If we were having coffee, then I’d share that I spent a lot of time early in the week switching web browsers. Somehow, with the latest update, Edge for iOS is pretty much impossible to use for me. Whether this is an actual bug in its accessibility with VoiceOver or it’s just that things have been switched around like crazy and I’m not tech savvy enough for it anymore, I don’t know. I tried getting the freakin’ Copilot (Microsoft’s AI) that was constantly in my way to disappear, but it wouldn’t.

So I decided to leave Edge behind altogether and switch browsers, because I don’t like using one browser on my iPhone and another on PC. I finally settled on Chrome and, though I’m still figuring things out, mostly it works okay.

If we were having coffee, I’d then tell you that a (now former) staff came to say goodbye on Monday. I gave her the “bull in a china shop”, ie. the polymer clay elephant in a mug I’d created last week. She loves unicorns and elephants, but she already had a unicorn.

This time around, I didn’t get a proper description from the Be My Eyes app, because it judged the mug to be its body and the letter J (for the staff’s first name) to be its tail.

If we were having coffee, I’d then tell you all I had a good day yesterday. I walked a lot, but also visited the next town’s market. I had originally been uncertain as to whether I wanted fried fish (or shrimp really) because of it being quite a high-calorie, high-fat food. I eventually said “screw it!” and considered yesterday a total cheat day. I, after all, also had fried chicken for dinner. Granted, other than that I only had a salad.

If we were having coffee, then I’d share I do really need to lose weight though. I’m about 2kg overweight, which doesn’t seem like a lot given that I used to be 20kg heavier than I am now. However, the “screw it!” thoughts are pretty commonplace especially given the current state of the world. For example, my unhealthy voice is telling me it’s not a problem if I risk getting a heart attack ten years from now because, for all we know, the world may’ve gone up in smoke by then anyway. I, thankfully, do still have more tangible reasons to lose weight or at least not gain any. Like, I still want to be able to wear my favorite pants.

If we were having coffee, lastly I’d share that I am still going strong meeting my movement goal on my Apple Watch each day this month. I’m really hoping for the perfect month award. That being said, I’m not overcompensating for my having indulged in too many “cheat” foods. Not that I believe in cheat foods anyway, since there are no bad foods, just less healthy habits. And overexercising can be a less healthy habit too, as my dietitian reminded me on Wednesday. Not that I’ve ever truly done that, honestly. The bottom line though is that I’m not engaging in compulsive eating habits or exercise. I feel things might need to be a little more controlled, but I’m not sure how to do this.

Health Anxiety

Posted on by Astrid

Hi everyone. Today in her Sunday Poser, Sadje asks us whether we deal with health anxiety. Health anxiety is excessive worry about one’s physical health. People who suffer from it, interpret normal bodily sensations or minor ailments as a sign of serious illness, such as cancer. There are people with health anxiety who are constantly running to the doctor, but also those who bury their heads in the sand and worry in silence.

As for whether I myself suffer from health anxiety, I used to suffer pretty badly. I could be a mix of the head in the sand type and the running to the doctor type. When I was nineteen, I remember having pretty bad anxiety one night and concluding I had some serious thing going on. My sister was in my room trying to comfort me, but not being able to figure out why I was having the symptoms I was having (most likely, a panic attack), drove me crazy. I don’t know why I didn’t peruse Dr. Google, but I didn’t. The next day, I called my GP, who wasn’t fully comforted either, particularly when she learned I have hydrocephalus. Long story short, three weeks later I got the all-clear on my shunt from a neurologist, but I never figured out what those weird symptoms were.

I also had bad health anxiety when living on my own in 2007. I, being the type for objectivity, at one point purchased a talking thermometer, so that at least I could take my body temp. After all, my parents used to have a rule about staying home from school: if you don’t run a fever, you aren’t sick.

Thankfully, most of my health anxiety went away once I was admitted to the psych hospital. I still worried about my health sometimes, but it wasn’t significantly distressing. My health anxiety didn’t return once I was kicked out of the hospital to live semi-independently with my spouse.

One thing I struggle with, is knowing when a symptom is significant enough to go to the doctor for or even when it’s abnormal. I for this reason can go months with a symptom before I actually ask my staff to call the doctor.

Since owning an Apple Watch, I don’t freak out when its values are abnormal. Like, back when I first used it in 2022, my oxygen levels often were way below the minimum normal value of 95%. Now they are usually high enough and I have had them checked with an actual oximeter several times. I might’ve had sleep apnea back then, but then again my night-time breathing rate according to my Apple Watch is usually higher than average, not lower. In any case, I am not one to consult my doctor just because my smartwatch says I might be ill. Maybe that’s burying my head in the sand, but I do feel fine generally.

Opportunities for Peer Support

Posted on by Astrid

Hi everyone. Recently I was talking to my spouse about ways to enrich my life and my spouse mentioned trying to connect to more people through peer support. I have some negative experiences with peer support, for example being kicked out of the Dutch DID peer support group for allegedly being a faker. However, once I’ve found the right tribe, peer support could certainly enrich my life.

Last Tuesday, I attended an online meeting for my regional branch of CP Netherlands, the Dutch cerebral palsy alliance. Even though I’m not 100% sure I have CP, I was welcomed with open arms. Originally, the organizers were thinking we may need to end the meeting early, as there were only five of us in attendance including them. However, we ultimately chatted the entire 90 minutes of the meeting. I even showed the other participants the polymer clay dinosaur my spouse and I had created.

One of the other participants is also visually impaired in addition to having CP. He told me there’s a “young people’s” (ages 25-45) meeting of the Eye Association (for blind and visually impaired people) in Zwolle. Zwolle is about 50km from where I live, so not too far away but not quite in my local area. This means I can travel there at a heavily discounted price using my national ParaTransit taxi card.

I also found out, when looking at the Eye Association website, that there are general meetings in Apeldoorn, Deventer and Zutphen, the three cities nearest to where I live. These meetings, since not catering to “young people” specifically, will most likely be mostly attended by people over age 50, but I don’t mind. I don’t yet have a local ParaTransit taxi card though, so can’t go there yet. My male assigned staff is going to apply for one for me though.

On Saturday, I attended the annual nationwide conference of CP Netherlands. It was less informative than the last few times I attended, since I knew most things the workshop leaders talked about already. However, it was much better with respect to peer support, in that I got to meet several people I’d either spoken with at the online meeting the previous Tuesday or met at nationwide conferences before. I also felt validated once again. And, yet again, I came away with the idea to finally ask my GP for a referral for rehabilitation medicine. Given that most likely my childhood medical records are all gone somehow, I’m pessimistic about getting any answers as to whether I actually do have CP or not. I’m trying to reason that this might be beside the point, but honestly my gut instinct is that it’s not.

I’m linking up with #WWWhimsy again.

Early Experiences With Medical and Dental Care

Posted on by Astrid

Today’s topic for Throwback Thursday is doctors’ or dental visits. I have many early memories of medical care, probably because I, being multiply-disabled, often had to visit the doctor. Until I was about nine, that is, when my parents, my sister and I moved across the country and my parents stopped taking me to doctors altogether except when I had everyday ailments.

An interesting question Lauren asks in her original post, is whether your parents were scared of doctors or dentists. Well, truthfully, yes, mine are. My mother had her own fair share of traumatic experiences involving doctors, among which a situation that would’ve been considered medical malpractice had it been in the U.S. surrounding my premature birth. My father, I don’t know. He probably feels he’s smarter than most doctors and hence considers spending time with them a waste of his own time.

All that being said, up till the age of about nine, I was taken for medical care when I needed it. I don’t think I was really taken for health checks except those part of preemie follow-up. I don’t remember most of these visits, except the ones to the eye doctor. My eye doctor was always, and I mean literally always running at least two hours behind schedule. Waiting in the waiting room for her was the worst. Well, no, the second worst: the absolute worst was waiting for her to come back after she’d put dilation drops into my eyes.

I don’t think I was very afraid of needles as a child. In fact, when I needed to be put under general anesthesia for my various surgeries, as soon as my parents allowed me to make the decision myself between the anesthetic mask and the injection, I always chose the injection. I remember being horribly afraid that I would get the mask when I had to have cataract surgery in 2013, even though I’m not even sure they do this on adults.

One thing I did always remember was that the hospital staff would stick me in my toes rather than my fingers for finger pricks, because the nerves in my fingers should not be damaged because of the fact that I read Braille. I had to have a finger prick last year and told the medical assistant that she was supposed to stick the needle in my toe. She explained that she couldn’t, so I reluctantly agreed to have her stick the needle into the side of a finger I hardly use for reading.

As for dental care, I think I did have proper dental check-ups when I was young. I didn’t have problems with my teeth until I was about eleven and fell and a bit of one of my front teeth broke off. That was the first time I started worrying about my teeth. I did need braces, which was quite an ordeal as the orthodontist never explained properly what I could and couldn’t eat, so there were always parts of my braces getting loose.

I am not very scared of doctors. Dentists though, well, it’s complicated. I am scared of dentists, but also scared of losing my teeth. This has led to some rather odd situations in which I sought out dental care that I might not have needed and didn’t seek out dental care that I did need. Thankfully, now that I live in long-term care, I do get regular dental check-ups and the staff and dentist do try their best to make me feel as comfortable as possible.

Illness or Injury

Posted on by Astrid

Today’s topic for Throwback Thursday is, as Lauren describes it, “Ouchies, owies and boo boos”. In other words, we’re asked to share our experiences of illness or injury when we were growing up. Now is an interesting time for this, as I’ve just recovered from the worst symptoms of COVID. Even though I had a mild case of it, I am tempted to take back my assertion that it’s “just a bad cold” even in my case. I’m still exhausted by 9PM, or at least was yesterday, and today just a walk around the day center had me horribly out of breath. Forget the elliptical, which I told my husband yesterday that I’d try to go onto today. Anyway, that’s as far as my current state of illness is concerned. Now, let me share about my childhood illnesses and injuries.

As a young child, until I had my tonsils and adenoids out as a Kindergartner, I was prone to colds and the flu. I can’t remember whether my parents let me stay home for most of these illnesses. Later though, we clearly had the rule that, if I ran a fever, I was sick and had to stay home. Otherwise, I wasn’t sick and had to go to school. Not that I remember ever “playing sick”.

I don’t think I was ever given medicine, such as painkillers, unless it was obvious from outward signs that I was sick either. I mean, I do remember having to take paracetamol as a child, but not for a headache or toothache. We did have a licorice-flavored cough syrup, but I only took it when my parents directed me to. In fact, it wasn’t until I was in my mid-twenties that I first learned to ask for medication myself. For the brief time that I lived independently and could take over-the-counter medications when I felt like it, I didn’t either unless a support worker directed me to. In fact, I remember buying a talking thermometer back then because I was feeling weak often and, relying on my parents’ rule that you had to have a fever to be sick, I wanted to know my body temp.

Similarly, I wasn’t taken to the doctor for minor illnesses or injuries usually, unless my parents decided they were enough of an outward abnormality to be taken seriously. I remember my father took me to the doctor one day when I was about fourteen because I had bad eczema on my neck. I didn’t see the need, but apparently it was so ugly that my father wanted me to get treated.

When I was about seventeen, I made my first appointment to see my GP by myself. I had a horrible earache, which turned out nothing to be the doctor could do much about, by the way. However, my parents said I also had to ask about getting treatment for my toenail fungus, which I didn’t consider particularly bothersome at the time. To be fair, I do now see they were right to be worried about my toenail fungus, even though it took me fifteen more years to finally get it treated properly. However, overall, I’d had it with their message that my outward appearance alone dictates when I should get help (medical or otherwise) and this was probably my first small act of rebellion. I never quite learned to gauge when I can trust my body’s signals (or my mind’s interpretation of them) and when I can’t. I’m finding that, for this reason, even up till this day, I rely mostly on other people’s judgment.

Five Books About Life as a Doctor #Connect5Books

Posted on by Astrid

I love reading books in which people share about their real life, including memoirs and diaries. I am also very interested in medicine. Today, I am joining in with Connect Five Books and sharing five books about life as a doctor.

1. For the Love of Babies by Sue Hall. This collection of stories from an American neonatologist is truly wonderful. I read it when it first came out in 2014 and it was one of my quickest reads at the time. As regular readers of my blog know, I was born prematurely and spent three months in the neonatal unit myself. However, in this book, Hall also shares about babies born with genetic syndromes or those born addicted to drugs their mothers used.

2. Cook County ICU by Cory Franklin. This book covers nearly fifty years of medical practice, from the author and his father, in an intensive care unit in Chicago. Franklin shares his experience becoming a doctor in the ICU very candidly, including how a supervisor tried to ruin his career because Franklin dared talk back to him. You’ll also read about some fascinating patients, such as some of the early cases of AIDS, before it was known to be AIDS.

3. Doctor’s Notes by Rosemary Leonard. This is a collection of stories by a south east London GP. I took a lot longer to read it than I did the above two books, but once I got into it, it was truly enjoyable.

4. Do No Harm by Henry Marsh. This is a book by a neurosurgeon. I have read a few chapters, but can’t seem to move along in it.

5. Tales From the Couch by Bob Wendorf. Okay, I’m cheating here, as Wendorf isn’t a medical doctor. He’s a clinical psychologist. However, psychologists in the United States are often referred to as doctors too. Each chapter in this book focuses on a particular psychiatric condition. I haven’t read much of this book either yet, but would like to.

Do you enjoy reading about people’s real life or about medicine?

Fatigue (For Lack of a Better Word)

Posted on by Astrid

And yet again I did not blog for what feels like an eternity. To get myself back in the swing of things, I’m just opening the WordPress app and writing. I don’t know where this will lead.

I’ve been feeling off lately. Pretty fatigued. This is nothing new, even though when I talked to my staff about it, they originally wanted to chalk it up to my transition into the care facility.

The thing is, this fatigue thing or however to describe it, as well as what I can only describe as a slow decrease in cognitive energy, has been going on forever. I told my staff about it on Tuesday and told her I want to discuss it with the facility’s intellectual disability physician when I have an extensive introductory appointment with her in November. Not that I have an intellectual disability, but the physician wants to have an appt with me, so why not make use of it? That’s probably still going to happen, but the staff called the general practitioner anyway, because I have a history of vitamin and mineral deficiencies. The GP ordered bloodwork, of which I hope to get the results soon. I guess nothing’s up once again and that probably means that my vitamin B12 deficiency that I had in 2015 was indeed due to poor nutrition. Or something. I don’t know.

The annoying thing is, physically I appear fine. Intellectually probably too, simply because I have a lot of reserve. It’s easy to chalk this whole thing up to autistic burnout, but then again doesn’t one ever recover from that? And does it even get worse at the relatively early age of 33?

I still feel like a burden for raising this issue. I mean, yes, I’m more forgetful than I used to be, but I can probably still pass a mental state assessment. Besides, compared to my fellow residents, I’m like superhuman where it comes to independence. So yes, why even see the intellectual disability physician? But she wanted to see me, so yeah.

Last Tuesday, after I told the staff about my concerns, I felt very stressed. The staff was so very nice! She asked if I wanted to take a bath, but I initially declined, because I knew it was several other residents’ bath time. I know that I shouldn’t be filling in what other clients need, but well. Then she offered to take me to the sensory room at the day center. It was great. I still felt very unquiet mentally after it, but physically I could relax.

I’ve been using the sensory room more often these past few days. The staff in charge of the sensory group at day activities even bought me a blanket that’s mine alone to use when there. This kindness totally amazes me. Of course, I’m still waiting for the other shoe to drop, as I seem to have had so much experience of unhelpful support staff (to use an understatement) that I doubt there’s even ever a place where I can feel well cared for.