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.

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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.

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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.

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.

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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…

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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.

A pheasant went for a stroll

Morning of the fourth day post-anti-depressant pill: a bit of a headache and I'm tired, but not much else. Yay! If I ever want to go on a three-day drug trip I guess I know what to do, and it is prefectly legal!

Now I am reading "Like Shaking Hands with God", a conversation with Kurt Vonnegut and Lee Stringer about writing. A bit dated but pleasant. Kurt talks about faxes as if they are the latest technology, which I suppose they were at the time. Although I remember going to a talk about the future of technology around about the time this book was written and the fellow was saying that CDs and faxes were a thing of the past. I guess he was ahead of his time, they are still around. Maybe they should be a thing of the past and people still cling to them. But it is hard to find a laptop computer these days with a CD player or fax card.

As it turns out Kurt and Lee are good at aphorisms, there were a couple I wanted to underline.

Kurt: I go home. I have had a one heck of a good time. Listen: we are here on Earth to fart around. Don't let anybody tell you any different!

Lee: It's a struggle to be human. I mean, if you really look at it, we wake up every day to an alien environment. Certainly not the environment man was created in…So to me it is very much a struggle to be human, not so much a struggle to do something else, but a struggle just to feel human.

I think that is one way (two ways?) to sum things up. I agree with Kurt, we are here to fart around, and I agree with Lee that sometimes it is a real struggle just to be human in an alien world. Saving the world is just too massive a job to get hung up on, and getting more massive all the time. One local activist I know who spent a lifetime trying to make the world a better place, got herself into a helluva depression when she thought about the fact that she hadn't changed a thing. Although lots of people do make a difference, it's being the right person in the right place at the right time, with plenty of backup. And it is not something you can control without doing some damage to yourself. I don't envy the ones who manage it.

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So our local controversial experiment ended abruptly. They turned Main Street into a one-way street and a couple of weeks later they shut it down and it went back to two ways. I've heard a couple of reasons why it ended early (it was supposed to go on to the end of September), so take your pick. One is that the town council finally heard the merchants screaming about loss of business, the other is that there was an accident on the local freeway and traffic was diverted through our town. The big trucks couldn't make the turns necessary in the new one-way route. 

I can just imagine what that would have been like, there were four turns they would have had to make on roads never designed for that kind of traffic. Anyway I was down town a day after the reversion and it no longer seemed like a ghost town, the constant traffic made it feel busy. I liked it. I admit that it was kind of nice to walk across Main Street without having to watch for traffic, but it was also kind of weird. And one business man on the side street that traffic was being diverted to referred to it as Highway One. Crossing that road was a little more tricky.

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Friday was Mask-up Day. Everyone has to wear a mask in public indoor spaces from now on. It's on the honour system, you're not supposed to harass people who are not masked. We had two new cases of Covid-19 on Thursday, but they had just returned from travelling and were already self-isolating when they tested positive. So it goes. There were rumours that we were going to open up to non-Maritime provinces, but the premier said that was not happening soon. He did say that we would have to in the near future, that we needed to recover our economic health as well as our medical health.

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After a one day respite we're back to heat wave again. Yesterday was nice, I didn't have to shut myself indoors with all the curtains closed. I did a spot of gardening, planting a second crop of peas, carrots and greens and throwing some "fertilizer" (coffee grounds and eggshells) on it. I visited a friend and had a coffee with her and then held the ladder while she climbed up to hack off some branches in a caterpillar-infested tree. 

She has a dog that is Hapi's best dog buddy here. Ava is a very small dog, but tough. She lived on the streets of Taiwan before coming to Canada. She met Hapi and Hiro one day at the Reservoir and assessed them instantly. She walked up to Hapi and bit her on the nose. We can be friends but don't mess with me, she said. Hapi never has and they are.

Good ol' Main Street, there she goes

There's an interesting controversy going on here right now. With little fanfare or warning the town council is setting our Main Street as one direction only, starting July 1st. A parallel street will be set as one way only in the opposite direction. I heard about it at the Reservoir one day and went online to find out more and there was nothing. Not even on Facebook or the official town website. However I did read a comment on the Facebook page for the town about there being a petition against this new policy and already it had 800 signatures. Someone else commented that in a town of our size that indicated that hardly anyone was against it, but considering how few of us actually knew about the change let alone that there was a petition against it, kind of argues against that. Anyway, I've not heard anyone say they think it is a great idea, most people I've talked to think it is a disaster in the making.

Initially I agreed that it was a stupid move but when I thought about it a little more critically I couldn't really come up with a logical argument against it, other than that a big sudden change is going to cause a lot of initial confusion. I just wish it had been made more public further in advance. But in these days of Facebook and Zoom, everybody goes public in those venues and if you're not there, well, too bad for you. Maybe the town council should be posting decisions at the Reservoir, haha.

Something else I heard at the Reservoir was that the town did post about the change on Facebook, but the negative reaction in the comments was so overwhelming that they deleted the post. I have no evidence to support what that person said, because if it was there before it is gone now.

It is supposed to be a pilot project so we will see how it goes.

I was looking for a photo of Main Street in my collection to illustrate this post, but I couldn't find it, it might not be scanned in yet. However, I did find this photo of the family dogs when they all came to visit back in 2011. Hapi ended up staying but Hiro and Dobby returned home.

Hiro, Hapi and Dobby at the Reservoir, 2011

Unfortunately Hiro and Hapi ganged up on Dobby and he returned home temporarily injured. A couple of years later Hapi and I visited Dobby's home in Toronto and Dobby let Hapi know that she was not welcome on his turf. Their relationship was civil but not friendly.