Another year, another day...

Today is over a year from my last post. Here's a list of what has happened in that year, in no particular order:

Princess died, she was just over 15 1/2 years old and suddenly lost control of her rear end. Too big for me to carry and I declined the vet's recommendation of X-rays and possible surgery.

I flew out west and back; I stayed with a friend in New Westminster and visited various friends and family. The main purpose of the trip was to see my brother with stage 4 liver cancer on Hornby Island. I had promised myself I would go when I no longer had a dog. I had such a lovely time with few health repercussions. Wore an N95 mask on all airplanes between here and there.

My New Westminster friend's balcony overlooking the Fraser River

While out west I saw a dear friend with advanced Parkinson's. Sadly, the mental/cognitive symptoms were far worse than the physical ones. Her partner arranged for her to go into a pretty good nursing home when he could no longer cope with her cognitive decline. When I saw her she was seriously crippled and in a wheel chair, but she did recognize me and smiled delightedly to see me. Her partner said it was the first time in a long time he saw her that happy. But she cried when we left. And a couple of weeks ago her partner called me to say that she had died. Her decline was rapid after I saw her, she no longer recognized him or responded to him. She was my best friend when I lived there, I feel so badly for her, how awful her decline was. But I am grateful that I saw her before the end.

My dear friend and I

My brother continues to decline, he is all there mentally but very thin and frail.

My other brother has also been diagnosed recently with cancer. The diagnosis came in December but he didn't want to tell anyone over Christmas so I only found out in January. Simultaneously his wife was diagnosed with cancer, had immediate surgery and is recovering now. I hope that goes well.

I started attending my writing group's zoom calls, in hopes that it would inspire me to start writing again. Not sure it was that successful. 

In addition to my fish I got four mystery snails. They fornicate a lot and leave bright pink batches of eggs on the walls of their aquarium. They have zero interest in parenting those eggs.

 

Mystery snail fornication in progress

Worst drought in a long time, starting in June and not really letting up until October. Followed by an early winter with lots of snow. My snow plough guy came five times in December alone, which is pretty unusual. 

I have two new dogs, Daisy and Maisie. Like Princess they were 13 years old when they came to live with me, but being terriers I suspect they will live longer than Princess did. They bark a lot.

 

Maisie and Daisy

And I am still sick. The last couple of weeks have been bad, I am trying to wait it out. There's nothing I can do. I feel like a puddle of mud.

However last fall I attended the 3rd annual Covid Symposium via zoom ( the Covid Network headed up by Dr Angela Cheung) and among other things connected with a guy who has organized a province wide support group. Since then I have attended a few group meetings and it is nice to connect with others in the same boat. They are trying to expand the reach of the group to the rest of Canada, people in Alberta and BC are interested but they haven't made connections in the rest of the country. I'd have thought people in Ontario would be interested but apparently not. The thing about this group is that sessions are facilitated by fellow LC sufferers. It's night and day having a group facilitated by one of us versus some healthcare professional. They just don't get the lived experience.

I've also been seeing a counsellor. She is nice and really tries hard to understand, but I can't describe it effectively. She told me about a case she is following, a couple in which the wife has LC and the husband feels like she is making a lot of demands on him causing him some frustration. It sounds like the wife is not Severe, she is able to work from home. Maybe Moderate-Severe. But even so… I am curious to hear how their counsellor is handling this case.

Today: well we had a big dump of snow two weekends ago and my snow plough guy ploughed my driveway up to my car, but I still had to dig a path from my back door to the edge he had ploughed to. Maybe double my car length. The snow had drifted so parts of it were over three feet deep. After that I did not have the stamina to dig out my car. A day later my neighbour was concerned and came over to dig it out (covered in over a foot of snow). By that time I was in a crash; I couldn't have dug out the car if my life depended on it. So I was very grateful. She said she needed to get out of the house to take a break from doomscrolling (she's American Canadian).

Anyway, I am still in a crash. Can hardly move from my couch, my skin is so sensitive my clothes feel like steel wool and when I touch my skin my fingers feel like sandpaper. My hands and feet tingle, my bowels are unhappy, my eyes are burning, my head feels like it's full of lead. Not to mention no stamina and even though I am in bed for 10 hours at night and apparently asleep for most of that time, I wake up utterly exhausted. The lack of stamina and the leaden head require that I spend most of my awake time lying down or semi-reclined. I force myself to get up to let the dogs in/out, bring in a load of firewood and fill the bird feeder. I make simple meals most of the time. 

However.

I signed up for HelloFresh just for a break from ready-made meals, but the minimum order is three meals of two servings each. Although for my appetite that's three servings each, sometimes four. They say that they require 15-35 minutes prep time, but at my pace it is at least double whatever they think it should be. 

I cannot stand at the kitchen counter for that long. I read the recipes and try to figure out how I can break it into two or more sessions on my feet, but the recipes have a lot of "meanwhiles". As in "while the rice cooks heat a large pan and fry some other ingredients" or "heat the oven and roast some other ingredients". 

Sometimes there are nested or sequential meanwhiles. Cognitively I just can't manage all the timekeeping involved in the meanwhiles, let alone the standing there always doing something or other. I frequently burn stuff. I have one more "free" meal and then I plan to quit. I enjoy the variety of ingredients and flavours but definitely not the work involved.

Catch up

New car in the driveway, in the rain and through a window, my reflected red plaid housecoat obscuring the view

So where was I?

Today is a very rainy windy Saturday and I am in my jammies, I may not change into daytime clothing at all. Last night my new-to-me car was delivered and now sits in the driveway. I have never driven it and it is raining too hard to transfer the licence plate from the truck to the car. I am assured that it is a wonderful car to drive, but have had no chance to confirm that.

I will definitely miss the truck. The past week I have been enumerating all of its deficiencies each time I drive it, in hopes of breaking my attachment to it. We did all the paperwork and money transfers last night, so the previous owner of the car now owns the truck. He plans to sell it to a mutual friend who really needs a reliable truck. I am happy about that, but still a little sad to let it go.

~ ~ ~ ~ ~

My brother out west is in liver failure, and my 15 year old dog in heart failure. After a crisis a couple of weeks ago my brother was given 3 months to survive, if that. I was trying to figure out a way to see him before the end, but travelling across the continent at this time of year whilst sick is near impossible. Could be done but at great risk to my own health.

Princess in her new bed with her favourite toy

Finding out that my dog is in heart failure pretty much put paid to that. In the meantime my brother's status has somewhat improved, his GP is saying that with proper meds he could survive much longer than the original prognosis. He even sounds better on the phone.

~ ~ ~ ~ ~

By mutual agreement my former GP and I parted ways a year ago. I've been transferred to a Primary Care Clinic and if I manage to get through on the phone on a specific morning I can get an appointment with a doctor the following week. Getting through is the tricky part, there is about a one hour window each week in which hundreds of people are trying to get through.

Nevertheless I have gotten more better care there in the past year than in the past 8-9 years with my previous GP. The doctors at the clinic ordered so many tests and scans and made so many referrals to specialists it darn near took my breath away. And unlike my former GP they explained stuff in non-patronizing ways. This is what medical care looks like!

It all came to a head in late September when the referrals came through and the tests and scans were scheduled. Extremely busy October, driving hither and yon for various appointments!

The specialists in turn recommended seeing other specialists not covered by MSI (provincial health insurance), so November has been a very expensive healthcare month. Specifically, a respiratory physiotherapist and an acupuncturist, both of whom are concentrating on getting my lungs working properly again. I was unaware that they were not!

Turns out that for the past four years I have been hyperventilating, causing insufficient oxygen to be absorbed by my lungs and in turn by my blood. You would think that hyperventilation would be obvious to me, but it was not. I think the acupuncture and breathing exercises are helping, but all the work of getting to appointments, minding my sick dog, buying a car and the usual activities of shopping, food prep, and minimal housekeeping is counterproductive. Not to mention the stress of family stuff. I am in a crash now.

~ ~ ~ ~ ~

One of the internists I saw prescribed an antidepressant that she thought would give me more energy. First time I tried it I last two days, the lethargy and nausea overwhelmed me. Second time I tried it I only lasted one day, same side effects plus insomnia. On top of the fatigue and orthostatic intolerance I am already experiencing it is just too much. I am told that the side effects will subside, but I need to take the pills for more than two days. And walk the dog, get meals, attend appointments in the city, and just generally carry on with daily life.

I thought I had four days of nothing scheduled so maybe I could try the pills then, but it didn't work out that way.
I was incapacitated by one pill.
Stuff came up I had to deal with.
I crashed.

Still here

It is very hard for me to get things done. I thought I should start some kind of 'to do' list on my phone, since that is usually close at hand, but the couple of apps I downloaded for that purpose were not what I had in mind. I wanted something like my Mealime app which keeps my grocery list. Finally I decided to just use Mealime, prefacing each 'to do' item with the words "to do". Mealime files them under "Other", works for me.

I vaguely had the idea that I would post to this blog after I got a new computer, since the old one seemed to be failing. Well, I got the new computer but the process for setting it up is proving to be complicated. It is still on the To Do list, but falling further down as other items become more urgent. So I am posting this from the old computer just to say "I'm still here."

Worst winter ever. My illness is worse and as I am 3 years in now, I have no prospect of improving. I know this to be Long Covid but cannot get diagnosed because there is no bio-marker nor is there any agreed-upon criteria for diagnosing it. In fact, most doctors around here do not admit to its existence. Until there is a diagnostic bio-marker most doctors will tell you that it is all in your pretty little head (meaning psychological not neurological) and take an antidepressant for it.

My GP referred me to a psychiatrist who asked me two questions: How do you know Dr. P (at the beginning of the hour) and Have you any questions for me (at the end of the hour).

He told me:
1) post-viral syndromes don't exist and he knows this because he grew up in Ireland and Brucellosis (I thought that was a disease of cattle?).
2) Brain Fog doesn't exist.
3) I should quit chasing specialists for a diagnosis.
4) When I told him that my experience with antidepressant side effects was pretty awful, he said, Well even Tylenol has side effects. 

Since he never asked me any questions about why I was there or my state of mind, I assume he got all of his knowledge of me from my medical record. Great.

Now that many countries are funding research into Long Covid, a lot of potential causes and bio-markers are being suggested. Maybe sometime soon (i.e., within the next couple of years) they will narrow down on one cause and one bio-marker. Here in Nova Scotia it will probably entail investing in new technology to detect that bio-marker, so say another couple of years. That means Long Covid will go from being a syndrome (a collection of symptom criteria) to an actual disease, as MS did when the MRI came into play.

But that's not a cure or even a symptomatic treatment. So another decade or so. I am 75. In 5 years I may get my illness recognized, and in another decade and a half there may be a treatment. Right.

One day on FB (I rejoined in order to access some support groups) FB recommended I join a group dealing with The Afterlife. That made me laugh. With the tinnitus, brain fog and dizziness I don't feel like I am part of the real world, I am observing from inside a bubble constant noise, inability to think properly and unsteadiness, The BesideLife.

There is no outward sign of illness. I ace tests of my memory and executive function, but cannot follow a recipe or even remember the order of steps to make my breakfast. Words escape me. My longterm memory feels like old lace rotting away. I spend most of my time on my daybed, with breaks to take Princess for short walks and the occasional shopping trip.

I got an Accessibility tag for my truck and I bought a wheel chair. It was okay, but I need something with more features so I am sending it back to get a more powerful and more flexible chair. I am looking at my e-bike and kayak wondering if I should sell them. I've started VON Frozen Favourites delivered to my door at a very reasonable price. I now have a twice-monthly house cleaner.

I am gradually eliminating things from my life. The garden is probably going to go. I stopped making my bed. I don't socialize. My opinions and views on this disease are a bit too strong for most of the LC support groups I joined so I am slowly eliminating them as well. They say that when you live in isolation your brain gradually rewires to accommodate that, making re-entry into the world of people more difficult. It just feels like too much work, too much bother. I have one friend that I try to visit regularly, and according to my Garmin watch 'Body Battery' time spent with her is as restful as a sound nap; I guess the effort to maintain some kind of social persona is work, and I don't have to do that with her.

Yesterday I was in my driveway and my next door neighbour came over to ask how I was, in a concerned tone indicating that she really wanted to know. It was a bright sunny warm day and I am now quite sensitive to light and I was leaning against my truck in order to talk to her. You know how you feel when you have the flu with a high fever? It was like that, a real struggle to gather my thoughts and figure out what to say and what not to say, all the while clinging to the truck to stay upright and closing my eyes against the sunlight.

The snow is gone and temperatures have warmed up. I see young able people running and cycling and walking briskly, even swimming (the ponds are still way too cold for us older folk but for young people it is great for scampering in and out screaming about how nice it is while clutching their chests in what looks to me like extreme coldness). Princess has discovered her inner lab and goes crazy in the water chasing sticks and wanting to be part of the crowd of young people having fun. She caught their frisbee in mid-air and ran off with it, obviously hoping for someone to chase her and throw the frisbee again.

Given that this is my new life, I would like to re-invent myself within the confines of disability, but I don't really know where to start.

Brain fog, experts and good neighbours

Third heat wave of the summer, although it being late August the nights are a bit cooler so it is not quite so debilitating.

~ ~ ~ ~ ~ ~

A while ago I quit Facebook, but then re-upped in order to join a couple of groups related to Long Covid and ME/CFS. There have been some very helpful, to me, discussions there about these disease syndromes, their symptoms, and the various drugs, supplements and remedies people have tried. Also a lot of comments on how helpful or unhelpful various healthcare professionals have been.

Recently there was a discussion of "brain fog", a symptom of both LC and ME/CFS. If you consult Dr. Google it is generally described as mental confusion, cognitive and memory deficits. These are all true, but that doesn't nearly describe what it actually feels like. So in this discussion, one fellow described it as like a concussion on a bad day and a hangover on a good day. A woman described it as like having a concrete block in her head and another like someone has poured concrete into her skull and it has set solid. I especially like that last description but they are all pretty good. I often have to lie down just because my head feels so heavy… like a concrete block. I have never heard a healthcare professional describe it as anything other than cognitive and memory deficits (in other words, dementia).

I have had no luck getting anyone to understand what I mean when I say I feel dizzy, and I am thinking maybe I should use the concrete metaphor instead. More and more I agree with Michael J Fox when he says that the true experts are those with the condition themselves.

~ ~ ~ ~ ~ ~

I set off a bit of a firestorm in town this week. Over the weekend I had a rather unpleasant encounter with a local landlord who accused me of driving away all his tenants by my constant complaining about noise. Funnily enough, I had given up complaining and his tenants were going elsewhere to party after 10pm which suited me fine. Anyway the encounter was very upsetting, so I wrote an email to the Town Council about it and I told a friend who writes a weekly newsletter for the Good Neighbours Association (a group of residents living in the student part of town who are having to put up with a lot of student and landlord bad behaviour).

A whole lot of people are horrified by my experience, including the Mayor. I am going to be interviewed this afternoon by a town employee looking into town/gown issues. A lawyer in the Association wants to know who the landlord is. He is not above pursuing such matters within legal limits.  

I am not interested in going after this guy, he's unlikely to change his opinion and not being friends with him is not a huge loss. He is just an ignorant bully with no power. What I do want is for the Town to wake up to the bad behaviours of landlords, not only in how they treat the neighbours but also in how they treat their tenants (some student houses are very badly maintained and packed to the gills with young people who don't know any better).

What the Good Neighbours Association wants (among other things) is for the town to keep a registry of all landlords and require them to have business licences. I would hope that being registered would hold them accountable for complaints about how they run their businesses.

Sunny Days

Last few weeks have been terribly busy, and I have probably been pushing myself too hard. I am keeping lists of things I have to do, and as each item gets checked off two more get added on. I am not making progress.

A pile of turtles

Went kayaking, it was fun (and exhausting). As it turned out, the second Covid booster seriously set me back. I almost didn't go kayaking, I felt so sick. A full week after getting the shot I think I recovered, but the first day of kayaking left me almost too dizzy to function. It was only a bit less than two hours of an easy paddle up a quiet meandering river. We saw piles of turtles. Literally piles, they were perched one atop another on floating logs in the sun. The second day of paddling was much better, I had recovered from the booster shot and was able to spend the whole day out on the water. 

There were six of us in a three bedroom cottage, ranging in age from early sixties to mid-seventies. The difference in energy level between the three in their sixties and the three in our seventies was pretty stark. The other two seventy year olds were recovering from bouts of Covid in April, so they were in only slightly better shape than me. On the second and third days we split up into two paddling groups, the younger women wanted to go further faster. They even went swimming!

It felt good to be out in my kayak again, the trip was so worth it.

Shortly after I got back, the roofers arrived to reroof my house. The idea is to have brand new shingles under the solar panels. In three days they had most of it done but there are some ridge shingles missing because of shortages; none to be had in the entire province. They'll be back to finish the job when the ridge shingles are available again. I warned them about my crow family, but there was no conflict, the men and the crows did not bother each other.

I called the solar panel installer after the roof was done to get an estimate of when he planned to start. Turns out some document or other got lost so there is a delay. Surprise surprise. He thinks he will start in 3 weeks, and it will take about 6 weeks. I am not holding my breath.

Then I put my car up for sale, it sold within a couple of days. I priced it at an amount that I wanted, then after it sold I looked on the internet to see what it should be priced at. I was about $500 under what they said it was worth. Even so, the guy who bought it tried to talk me down in price. I am pretty sure he knew it was already underpriced, he just wanted to see if he could get an even better deal. Nope.

My next big job is to get the house painted. I had already lined up a friend to help me do that, and she wanted another person to do the ladder work. A friend of hers has a son with a mental illness that pretty much prevents him from getting a steady job, she arranged for him to help, after running it past me of course. But she can't start until June and I had the idea that the young man could start this month doing cleaning and scraping. So he's been here for the past few days. He's a good worker, he just has difficulty relating to people. That's fine with me. He has some experience with this kind of work so I don't really have to supervise him. I know his mother from the dog park, she used to have a border collie that Hapi liked, which says a lot because Hapi didn't much care for border collies.

New garden frames and transplants-in-waiting

Since coming back from kayaking we've had beautiful sunny weather and I've been working in my garden. It is slow going because it's heavy work and I am tired and dizzy. I'm not making progress as fast as I would like. My transplants are huge and desperately need to be planted, but strictly speaking it is too early yet and I haven't got the beds ready for them. I did manage to get peas, spinach and some potatoes planted.

I love seeing the goldfinches and cardinals flitting about, and the male cardinals are quite noisy now, declaring their territories. Pinky and Big Red are still fighting, I saw them in a showdown in my neighbour's driveway. But they saw me watching and flew away before they really got into it.Traffic at the bird feeder is dropping off, but I keep it up because the cardinals always come in the evening and I like seeing them.

I am being referred to an internal medicine guy and I am supposed to go to the Chronic Conditions centre for a NASA Lean Test. That's to see if I have Postural Orthostatic Tachycardia Syndrome (POTS). If I have POTS then I guess it means my heart has been affected, but not sure how much. Not even sure I have it, but it would explain the two years of dizziness and fatigue. It's also a known complication of Long Covid.

I am reading an interesting book, A Primate's Memoir, by Robert Sapolsky. It's about his years in Kenya studying a troop of baboons. He obviously has a deep fondness for his study subjects and a wicked sense of humour. At the start of the book he says that the tragic last chapter is completely true, but he did change a few names. My curiousity caused me to read the last chapter first, and it was so tragic I almost couldn't go back and read the first chapters. Who knew you could be so fond of baboons? Stuff I've read about baboons suggests that the males run the show and females are completely under their control, but it turns out that is wishful thinking on the part of (male) animal behaviourists. As usual, things are a lot more complicated. However, because Sapolsky's research involved taking blood samples, and the females were mostly pregnant, lactating or generally taking care of children, he couldn't take samples from them. Taking a sample involved darting a baboon, waiting for it to fall unconscious, carrying it back to his vehicle where he took the sample and then returning the baboon to where it was when it fell unconscious. Since he couldn't really do that to a female who couldn't afford to spend time away and unconscious, most of the baboons that he knew up close and personal were male. 

All the lovely sunny weather we are having does not bode well for summer crops. The land is unusually dry. It is supposed to be a La Nina summer which is unusual too, and that means more hurricane activity. The large number of snow storms we had this winter were due to a La Nina winter. Not sure what unusually dry ground and unusual hurricane activity will add up to, not much good I guess.

Complexity

It's a good rainy windy day to stay indoors and recuperate.

I went to the clinic yesterday, about an hour's drive away on the highway. The highway goes through the interior forest of the province, rocks, lakes and trees. The reds and golds of the maples and birches were nicely setoff by the dark green of pines and spruces. A very nice drive.

The visit itself was long and tiring, I was there for 3 hours seeing a nurse practitioner and a care coordinator. They deal with longterm complex chronic conditions and I fit right in. I actually felt validated, this is not all in my head, it's not psychological, it's a real physical illness that is not well understood by doctors and medical researchers. The diagnosis I got is a kind of either/or thing; it's either Long Covid or it's ME/CFS or it's ME/CFS triggered by Covid.

They have two streams of treatment, one for Long Covid and one for everything else which they refer to as Central Sensitization (Fibro, ME/CFS, PTSD, and a bunch of others). They will let me know which stream they are assigning me to but they are not hugely different. The main thing is that they recently got funding for Long Covid and have to keep it separate, but seem a little vague as to whether a positive Covid test is a requirement. A lot of people had Covid in the early days but couldn't get tested because of the restrictive testing criteria at the time. So they believe I had it, they just don't know whether the lack of a positive test disqualifies me under the funding terms.

Ironically, when I was sick I was offered a test but I declined it because if it came back positive I would have to be quarantined and then I could not take Hapi off the property for a walk. She would have driven me crazy. At least without the test I wasn't quarantined. I did stay away from people and wore a mask when outside my house and got all my shopping done by neighbours, so I don't think I put anyone at risk.

It's going to be another few months before treatment actually starts, sometime in 2022. Not that there is a cure (there's not) or even an agreed upon treatment protocol, but simply guidance, support, various therapies for symptom management and referrals for testing as needed. So it doesn't really matter which stream I end up in, the only significant difference is that the Long Covid stream has a physiotherapist and the Central Sensitization stream does not. We have free physio at our local health clinic in town so if I needed that I could probably just get them to refer me there. Although I wouldn't even need a referral, I could just put myself on the waitlist. I don't feel like I would benefit from physio, but who knows.

I came away feeling quite positive about the whole experience, but exhausted by the time I got home. An interesting thing I learned is that many people in my condition often have good summers and then crash in the late summer/early fall. That has certainly been my experience. I was told that the crash could last till next summer. Or, I might improve a little over the winter and then crash again in the spring. That's more or less what happened this past year, so I guess I can expect more of it. I am glad I got a good summer. I also learned that I am very unsteady on my feet. I kind of knew that but the tests made it very clear.

The NP said, "I won't make you try to walk a straight line heel to toe because I can see that you would just fall over."

A couple of weeks ago I went for coffee with a friend who has been otherwise supportive, and she strongly urged me to not go to the clinic. That really I was just anxious about the pandemic. That kind of ticked me off, it's what I don't like about an invisible illness: people feel free to tell you it is not real. So it was nice to be somewhere that I was taken seriously and know that they deal routinely with a lot of people like me.

~ ~ ~ ~ ~ ~

I spoke to a neighbour the other day on the street, she's a lot more politically active than I am. At any rate she has recently written a lengthy letter to the town council about the student situation in our neighbourhood. She forwarded the letter to me and later in the day I read it; it was quite an eye opener. I tend to keep my head down about local issues because when I get involved I don't like what I see and it is a little upsetting. But she's younger and new in town and very gung ho about getting actively involved. We know each other because she has two big dogs who didn't like Hapi, we had to keep them all apart because Hapi would have been more than happy to set them straight about who was the boss dog around here.

So, our part of town has been zoned "R3", which is much denser than "R1". R3 is where all the poor people and all the students live, plus people like me who are not exactly poor but by no means rich. R3 is all I can afford here. R1 is where professors and doctors and town councillors and such live, nice quiet neighbourhoods with wide empty streets.

There's good money to be made by developers who have bought up all the big old houses in our neighbourhood and converted them to crowded student housing. They are still working on buying up whatever they can get their hands on that can be turned into the very profitable student housing. Bylaws state that they can't create apartments with more than 3 bedrooms, but they do. So a former single family home can now house 5, 10, or more students, each one with their own car. On the face of it, you see these big old houses in this neghbourhood and it looks not much different from R1, but the streets are packed with cars, there's garbage strewn around and properties are barely maintained. The town does not enforce the bylaws. The developers all live in R1 neighbourhoods, and so, for that matter, do all the town councillors. Out of sight out of mind.

When I lived here before, back in the '80s, it wasn't like that. There were students but the majority of houses were occupied by families. As kids grew up and moved away, parents either chose to stay or moved away too. The more houses that were bought by developers and converted to student housing, the more older residents moved away because of the declining neighbourhood quality. Now there are hardly any young families, just old people who either couldn't afford to move away, or stubbornly insisted on aging in place, or both. One older person in her 80s was told that if she didn't like how students behaved, why did she move into this neighbourhood? She's been here for over 60 years!

So, when the students rioted during Homecoming Week, I now blame the town council as much as anyone else. They let the developers create a ghetto, they even officially blessed it by calling it zone R3. What did they think was going to happen? Students are transient, they have no particular attachment to this town beyond the 3-4 years it takes to get a degree, they live in squalid conditions, why would they care?

What bothers me now is, should I go ahead and get solar panels? If this neighbourhood is going to the dogs and the town doesn't care, why should I take the risk of investing in my property only to have it torn down by some developer who wants to cram in yet more student housing? And how much of this noise and congestion and irresponsible behaviour can I take before I too want to pack up and leave? I am wondering now whether to sign the contract or not. They called me last week to say that funding for this year has been used up but there will be more next year so I should postpone signing the contract until December.

Yup. If at all…

~ ~ ~ ~ ~ ~

The birds aren't stupid, they've figured out the squirrel-proof feeder. I put the old feeder on my back deck so they now come to both feeders. The jays dominate the back feeder and the doves hang out on the deck floor below them because the jays are messy eaters: lots of leftovers for them. The chickadees, cardinals and nuthatches come to the squirrel-proof feeder in the front where they don't have to compete with the jays. So I can watch birds now from either my livingroom or kitchen windows.

Easter, happy or otherwise

Interesting weekend, although nothing happened and I didn't go anywhere except the grocery store on Saturday. I commented to the greeter at the store, a young man, about the length of the line up to get in and he responded that his mother always planned well ahead for Easter so that she didn't have to shop between Good Friday and Easter Sunday. I said, yeah, good plan, although sometimes there's a last minute item you absolutely have to have right away (for me it was a sweet potato; I know, not really a must-have but in my mind it was), he agreed and we laughed. So that was pretty much all the excitement for the long weekend.

~ ~ ~ ~ ~ ~

Hapi keeps changing her schedule, each change involves more sleep time, she just rearranges her day to accommodate the increased amount of sleep time. So these days she sleeps from supper time to noon or later, has a midday or early afternoon meal and then a walk and then her late afternoon supper. She does some 'sundowning' after her supper, I try to grin and bear it although sometimes I lose my temper when it goes on and on and on. Her bedding is stinky which means my bedroom is stinky.

I used to have scent-free laundry detergent but the last purchase was excessively scented. Since I hang my laundry to dry indoors, well, between overly-scented laundry detergent and stinky dog, it's quite overwhelming. Let's just say that I can't wait till the weather improves enough to hang laundry outdoors. I may have to cave and toss the heavily scented stuff for some expensive unscented detergent.

~ ~ ~ ~ ~ ~

I've been doing some online reading about the little bit of research done on long Covid. Emphasis on 'little bit'. This morning I completed a detailed questionnaire about my own experience for a research survey on long Covid, being run by some 'citizen scientists' (i.e., not degreed medical researchers but interested citizens with research skills) out of the UK. It took more than an hour to complete, fortunately they warned in advance that it was long. The weather is crappy and the dog is asleep so I didn't have anything more productive to do.

What I think is interesting is that 'patients' have lost patience with doctors and are taking things into their own hands. When AIDS first reared its ugly head no bona fide medical scientists gave it credence; it took activism on the part of the patients to push them into doing the research. Now there is a diagnosis and a treatment but no cure. When Chronic Fatigue Syndrome appeared, same thing. Even today there is resistance to that diagnosis and no agreed upon treatment. There's not even an agreed upon definition of CFS (several 'official' ones but no solid agreement). So now, long Covid is going through the same process, trying to get medical people to recognize it and research possible treatments.

But this time it's different. This time the patients are doing the research. Thanks to social media and more open access to scientific research papers, the people who have the disease are doing the work. Some scientists came up with the name 'post Covid viral syndrome' but that didn't stick, 'long Covid'—a name first used by a person with the disease on Twitter (#longCovid)—did. They call themselves 'long haulers' and the scientific research community has kind of been forced to use the same terminology. There's still a long way to go, but I think it is a step in the right direction. One of the scientific papers I read last night commented that scientists need to consult with the real experts on the disease, namely the people who have it. You'd never have seen a scientist saying a thing like that even a year ago.

I think there is a sea change in people's attitudes toward complex disease syndromes. It used to be you had to wait for some degreed medical researchers to recognize it, devise a means for diagnosis and then research possible treatments. Now, people who have these unrecognized complex disease syndromes don't want to wait for degreed scientists to pay attention, nor do they want to wait for funding from official government sources. Covid has made it abundantly clear how a bunch of sick people can gum up an economy, paying attention to young sick people is starting to be a thing. [agism still works against old sick people, it'll be a while before that changes, in my opinion]

The UK seems to be making headway with this and I expect the US is too. They are further along in Covid infection rates and vaccination rates than we are here in Canada so they have more to work with. More manifestation of the disease, more recognition of its existence, more research work on it.