2025 first quarter (our winter): a set back in energy, slowly getting back, taking preventions to keep this from happening again
Posted by jpluimers on 2025/07/03
A list of events caused a big set-back in my energy during last quarter from which I am now – with careful planning what I do and when/how I rest – steadily recovering.
I started writing this early may, and finished early june because too much happened and it took me a while to get it from my confused mind onto paper.
One of the things I thought for and hopefully will start after a much needed holiday (the first longer one since 2018) is mental help.
Neuropathy part 1
First of all, the last quarter around here was the winter period which normally is already a depressing period for me (besides the way too short days in any winter, I lost my way to young dad in January 2004 while supporting my mom in law who who was slowly eaten away by metastases and died a few months later). Contrary to last year which had quite a sunny winter, this one was grey, wet and cold. This caused the ever present neuropathy in my hands and feet to act up a lot. Even with 20 degrees Celsius at home, the numbness and simmering pain would not really fade during the day.
A side effect of the neuropathy is that it made the ever present joint pain in fingers in toes more prominent. Normally I can mentally ignore those, but – like back during cancer treatment in 2020 – this was much harder to do.
Paracetamol, or acetaminophen as it is called in some countries, helped somewhat with the pain, but the neuropathy by itself I had to postpone most of the things I wanted to finish in the house as I could not rely on my hands. Back in the winter I was at higher doses and now I am still at 500mg in the morning and 500mg in the evening.
To try to cope with the neuropathy, I did the same thing as during cancer treatment: stay in bed as much as possible. In retrospect that was not the right way to cope:
Fitness went south
Staying in bed resting did kind of work, but caused an adverse side effect: my physical fitness deteriorated which at first I didn’t notice. Only when being really way more tired after activities, slowly the bell started to ring.
My normal routine to keep physically fit is to walk/cycle outside about every other day. Since weather became better in April, I am doing that again, but the restoration to the previous level is going very slowly. Today for instance I can’t: it’s too cold outside and my hands and feet hate me.
The current situation is that after a day of much physical activity (like the photography things I did on Saturday May 3rd) I need almost 2 days of rest.
It means that people around me see me do things, but hardly realise the sacrifices I need to make doing them.
Funeral season
Last quarter funeral season also broke loose: 10 deaths among friends and family (plus at least 6 more a bit further away), of which we could attend 7 funerals: in January it started with two in a week; June had 4 deaths in 3 weeks time of which 3 in just one week. We could only attend 2 funerals.
The second funerals in January was really mentally challenging:
I thought that on my mother’s side she and one of her sisters were the ones putting a really hard time on their families, but apparently it went further: the sons of another family member were mentally and almost physically fighting at that funeral. This caused much emotional distress to the audience, especially with my mentally retarded brother and me. It took me more than a few weeks to recover from and even longer from my brother: he even didn’t want to attend another funeral on the same family exactly 6 weeks later.
Over the last 2 months, I had various deep conversations with some family members I deeply trust in that part of the family tree and found out mental issues there are way above average. I hadn’t been in touch with most of that family part as at home my mother was a danger to us though back then I could not put my finger on it: I only knew that keeping a distance from here made me feel way better, but when I had contact with people around me, she would always blame me in very confronting ways. Later, when she developed severe dementia I learned she has lost all her friends because they knew what I didn’t: she kept up appearances while in fact being very narcissistic.
One thing coping with losing friends, especially younger ones, is a thing called survivor guilt. Statistically I should not be here anymore, but yet here I am and others aren’t. It took me quite a while to recognise this feeling and its origin. Now that I know it, it is easier to cope with.
Another thing is that I don’t have people any more that know about my young past: my mentally retarded brother hardly contacts and has a much fading memory. My own memory isn’t what it used to be either. Of important things, I often do remember they happened, but cannot point exactly when and in which order.
Since my cancer therapies, my short term memory has sort of come back, but I still cannot trust it. This period, it has worsened, likely because of all the stress. From 2020 on, I put more and more notes in draft posts here, agenda, and contacts. That takes time, but helps a lot. That is: when I don’t forget to make those notes. This period, I forgot that step way too often.
After each new death, I feel kind of strangled for quite some time, resulting on not even being able to do basic household things. I want to find a way to better cope with this.
Health among peer-friends
Not all my peer-friends (ones in similar health situations) are doing really well, but remarkably almost all have survived so far. Many of them however cope with similar problems: energy levels plus mental state taking big swings.
The physical challenges of all these friends only very partially overlap (sometimes different from the same health background, sometimes similar from different health backgrounds), which makes it difficult to learn from each other.
The common thing is the support within this group of people: everyone has non-visible handicaps and very matching experiences with the “outside” world having a hard time understanding what we are going through while seemingly “looking normal”: the rest of the world kind of moves on, forgetting what limits is in doing that in the same way.
Having to explain yourself over and over again takes a lot of energy, and takes away a lot of the fun in interactions.
Noise season
With no preparation time (the request was published on January 28th, rushed and started only days later) we got almost two weeks of 07:00-18:00 noise with the demolishment of Magnifiosi/De Greef (see video below) deprived me of much needed sleep in Februari. That was supposed to happen a lot later, but the village was afraid for problems and rushed the permit and works.
Mental kick in the balls
At the end of the year, the association where I had been practicing my most important hobby since the age of 10 finalised the deny of me re-integrating to the position where I stopped mid 2019 and had positive talks about re-integration from 2021 to early 2023.
During the yearly general members meeting in March, the posed an update on their house rules (which they had been working on since 2023) including sections about discrimination inclusion, and openness and missing about a third of the appendices. I gave a 10 minute talk how in reality they had practiced that. The meeting still accepted the new rules. In other words: the association doesn’t give a shit about being loyal.
It means I started practicing my hobby at another association. On the one hand this takes mental energy to fit into a new group, but on the other hand this hobby helps to keep my mind at least slightly in balance: after practicing this hobby, the storm in my head – which I have had for whole my life: hello Autism! – is much less.
It also means I have lost a lot of my local network: given what happened, I can only trust very few people from the old association.
Glasses
February and early March weren’t nice either, but before that a small intermezzo: during the move to the new home I lost my spare glasses. Not sure what happened and when during that stressful period at the end of 2023, but they are gone. Early February I damaged my glasses. Somehow the coating quickly started to become craquelure. I got new glasses measured and ordered taking about 10 days. Somehow they were produced incorrectly, and it took 20 days for new ones to arrive.
I can kind of do without glasses for things that are further away than about 40 centimeters, but it causes way more fatigue: I have a cylindrical lenses as part of the progressive lens in the eyeglass prescription for both eyes because of astigmatism. Especially lacking the cylinder correction puts lots of strain on the eye muscles.
Physiotherapist
Mid-quarter, I sort of lost my regular physiotherapist that treated my back-issues because they suddenly needed surgery. This resulted in a period of increasing back-pain which – after finding a replacement physiotherapist with the right skills to help me keep my back in shape – now slowly is slowly improving again.
The result is 15 minutes of practice per day, and limited physical activity (that’s a thing I already learned while recovering in 2021) do only things I can recover from within a few hours and do not push too much (the latter part is very tough for me).
Support
About three months ago, the WMO housekeeping support went down from 1.5 hours per week (which is already below the minimum we need) to 1.5 hours every two to three weeks. It increased my household activities from about half a day per week (plus half a day resting) to more than a day per week (plus more than a day resting).
Both the physical therapy and support part show the the effect of two decades Dutch “effective market competition” in the medical and support areas in optima forma.
(Temporarily?) lost primary doctor
I figured this out in spring when having tried to contact my primary towards the end of the quarter about the health issues increasing. Reaching was impossible, and every time I had contact with somebody else not familiar with my case. It appears that like my physiotherapist, I am without a fixed primary doctor for at least a while and that I will have to do with the doctor on call of their pool of doctors. That’s mentally tough as re-explaining things from the past cost me a lot of mental energy.
Intermediate result: cold and diapers
The combined situation also made me way more susceptible to getting ill. So what started as a small cold early April, developed into a big cold with my whole body aching like crazy, effectively making me bed bound for more than a week except for the (then way more frequent than the normal 2 hours a day) toilet stops and eating.
In hindsight, I should have made notes that my diaper usage went up a lot. I mentally couldn’t because my body and head were in too much stress.
I found out after I ran out of them in 2.5 months instead of 4 with the feeling “oh crap, I am actually doing a lot worse than I thought”. It’s that mental denying thing telling me it isn’t so bad. But it was.
Hearing issues and playing music
The good thing is that a hearing problem on my one functioning ear that I coped with for a year (I have narrow eustachian tubes which when blocked cause moisture build-up in my ears) suddenly was gone: the cold opened the tube. This happened 25 years ago as well.
Playing music during the last few months was physically very tough, but still kind of helped keeping my mental balance. After each rehearsal, and concert I had to reserve at least a day but usually 2 days for physical recovery. Now that is slowly coming down to about a half to a full day.
Water and sewage
At the end of march, within 2 days both the sewer pipe broke (right at the connection between the house and the pavement: the previous owners had “fixed” it without telling us) and the water pipe in the scullery broke. This caused lots of distress as to clean sewage you need water, but without water everything became a lot harder (apart from on very short notice finding people that can fix it without charging triple tariff or more). This month another leak caused similar distress.
Gmail issues
Google Mail has “improved” to the point that it has become far less usable for me. With their situation, there are either two options for me:
- Much important mail that somehow that skips the inbox and does not get attention
- All mail arrives in the inbox including a lot of junk mail
Part of problem 1 is that Gmail skips a lot of mail that has automated mail senders in the headers. Many organisations have resorted to use automated mail for sending important mail including mail that needs electronic signatures (like the Dutch Chamber of Commerce) with short expiry periods but hard to guess flows then they actually send that (might be in days or weeks depending on their workload).
With 100’s of emails a day, this relatively new Gmail feature has started to become unworkable for me, so I am looking for a different hosting.
Phone spam
Since the start of this year, I get a lot of mobile phone scam of people that want me to add me on WhatsApp and other media in order to scam me. This costs a lot of energy, as often the call during my resting times.
That’s why I have turned off my phone during these hours.
Care and close family situation
Because of the situation we have home care. Like I described above officially that’s 1.5 hours a week, which is already way too little, but in practice it has been about half since february. Since my wife can’t do much because of nerve issues, I am filling in. That’s costing me way too much energy, needing me way too much recovery time and stalling many other things that I should do as well.
The care of one of my family members is similar to our own home care: because care organisations fearing government regulations actually being uphold they terminated all free-lance contacts. The contacts they initiated themselves because over the last 15 years they slowly kicked out their own personnel in favour of free-lance people (those were deemed to be more flexible, and market flexibility were supposed to drive cost down: it didn’t).
This means that care is also getting worse both around living and working. It means I, as the legally responsible person, need to step in way more. Which I – given my own circumstances – shouldn’t, but have to as finding another legally responsible person that actually cares is virtually impossible.
Another family member is going through a very difficult mental stage. Not going into details here, but it’s tough to the point of deep questions about the purpose of living. Things not going well at work and hobby plus the stream of deaths play an important role in this: there is only so much a mind can handle.
Medicine subscriptions
Halfway April, I found out that all of my medicine subscriptions had been cancelled: I could renew on the pharmacy site, but after that got a message that renewal was impossible. It took me a day spending in waiting queues and various medical instances to figure out the problem:
In January, right after picking up the quarter subscription, the cancer hospital had – for my upcoming checks in the summer – ordered 2 doses for all these medicines in case the check required admittance together with some medicines needed in preparation of the checkup. That way I knew I had everything together in one bag which is very convenient when grabbing everything I needed to go to the hospital.
That single action cancelled all standing subscriptions without the pharmacy telling me it would. The first set of phone calls all indicated I would have to reach out to all specialists to get their subscriptions reinstated. For some of these medicines it was multiple years ago since I saw the specialist, requiring a fresh round of medical referrals from the general practitioner causing more pressure on the Dutch medical system (which is already cracking because of overload) and my stress levels. Luckily it got solved, but it got me into distress for a couple of days.
Sleep
One of the things I cannot pinpoint the cause of is that it feels like I usually wake up way more tired than I went to bed with.
Opening more windows in the bedroom makes this going a bit better, but not.
It is one of the things I am seeking help for as well.
Neuropathy part 2: slow recovery
Other good news is that since halfway April the weather has improved causing things to improve and hopefully before the summer have improved enough to be on the levels of before last winter. Before next winter we need to figure out away to better prevent the neuropathy issues so I don’t get as much as a set back as previous winter.
One of the side effects is that I can now walk 5000 steps a day and rest for about 2 hours after that. For 10000 steps however, I need to rest a full day. So there is still work to do and that takes a much longer time than I hoped for.
Results
The other side effect, is that I have less bowel “accidents” meaning I am back at about 1-2 diapers per day. This is a good sign.
One of the net results is that I visited de Keukenhof only 3 times this year, which is way less than the 10+ times last year.
I hadn’t expected a set-back to happen so deeply and so quickly. That’s an important lesson, as I need to try to prevent this for happening again in the future.
Hopefully next winter will be better, and we are already giving that some thought: though we cannot prevent all these things from happening again, we can try to prevent a few important ones.
The plan for this fall, hopefully earlier, is to reshuffle things in our home to make a place where to put a home trainer, a small home gym machine and heating. That should at least help me through the next winter on the physical condition side.
--jeroen
Noise season
- [Wayback/Archive] (20+) Je bent lisser als ……. | De Greef of voor velen Magnifiosi gaat gesloopt worden | Facebook
- [Wayback/Archive] [VIDEO] Het einde van een tijdperk: de Sloop van Magnifiosi | Bollenstreek Omroep
- [Wayback/Archive] Gemeenteblad 2025, 32018 | Overheid.nl > Officiële bekendmakingen
- [Wayback/Archive] Nieuwe aanvraag omgevingsvergunning, Ruishornlaan 21, 2162VW Lisse, het slopen van “De Greef”. Kenmerk Z2025-00000186.
- __________________________________________________
- [Wayback/Archive] “Z2025-00000186” at DuckDuckGo
- [Wayback/Archive] Zesde bouwlaag jongerenappartementen aan de Ruishornlaan in Lisse geschrapt. Zo blijft er ruimte voor parkeren en groen | Leidsch Dagblad
- 2025-02-07: [Wayback/Archive] Nieuwsbrief Greveling-Zuid – Sloop van het oude jongerencentrum De Greef
- 2025-04-08: [Wayback/Archive] Nieuwsbrief Greveling-Zuid
- [Wayback/Archive] Gemeente Lisse: Greveling-Zuid
[Wayback/Archive] Het Einde van een Tijdperk: De Sloop van de Magnifiosi – YouTube
The Wiert Corner - irregular stream of stuff 
Leave a comment