Dementia Central is in the rearview mirror

 And finally-it's been exactly six weeks since I was released from my enforced incarceration into the hospital-and on Dementia Central, no less. I'm so very lucky that I got out with my hearing, not to mention my sanity.

I've had a seriously nasty time since I got a reprieve from the three screaming women. I'm quite certain that they forgot all about me in less than an hour after I left. I didn't forget about them, though. They stayed with me for awhile. I've never had to deal with anyone with dementia before, and I think that any carers or family are incredibly heroic. I couldn't do it. Within a few hours of listening to the rants, the screaming, the swearing (some of that came from me, truthfully), and the woman across from me taking her poo and smearing it all over her face (someone should have told her that it isn't a face mask), I was ready to throttle all of them. I can only take kindness and empathy so far...

I was so thrilled to get out of there that the first thing I did when I got in the door was make a very strong coffee. Bliss. Then a shower, as if I could wash off the preceding five days of extreme torture. I contacted everyone just to say that I was still alive.

I did arrange for tests for dementia. All I saw for days before my "prison sentence" were ads for dementia, dementia was everywhere. It wasn't until I saw my GP that I discovered that it wasn't some insidious plot to tell me something I didn't want to know; it was Dementia Awareness Month, so there was advertising everywhere. Thank goodness.

I took some tests and made the momentous discovery that I don't have any form of dementia and that I've still got all my marbles-in the right place and functioning perfectly. Forgetting things is normal-unless you forget everything, in which case - go to the doctor. And my 45 year old friend complained that she suffers from senior moments. I had to correct her: they aren't senior moments, they're pre-senior moments. She's only 45, Her brain isn't going anywhere.

But-it all gets worse, and everything went to Hell. I've been self-injecting the blood thinners for six weeks, and I was told by someone over the phone-over the phone, would you believe! = that I need to continue on the anticoagulants for a minimum of three months-possibly six months. Apparently it takes at least three months for the blood clots in my lungs to dissolve and disappear. That is what is written-and, of course, what is written must be true. Except when it isn't. And their protocols are BS anyway. Who lets a patient self-inject anticoagulants without checking to see if the medicine is working, and how well it is working, and the possibility that I might be absolutely fine in three months, not six? But the nurse told me-very rudely, in fact-that nobody will do anything because they're adhering to the guidelines. I questioned that-and her rudeness-and called her Nurse Ratched. Lucky for me that she wasn't a fan of the film, wasn't it?

So I got to work. I started emailing. And if you've been with me for awhile, you know what happens when I start emailing.  I don't stop until I get a satisfactory answer. So I emailed the immunologist and told her that there is absolutely no cooperation from the haematology team, and that some very nasty nurse I call Nurse Ratched refused to let me speak to the haematologist. I said that thirteen and a half years ago some absolutely incompetent doctors told me that gentamicin was safe and that they would be "watching me". I reminded her that they did such a sterling job that they nearly killed me; instead of killing me, they crippled me. And I said that I wasn't going to allow that to happen again. She emailed back, and told me not to worry, that she was going to email the haematology consultant.

The short version (or, short-ish version) is that my immunologist will be watching and I will have a phone call from the haematologist in December (before Christmas). And, if necessary, the immunology team will order a CT scan to see exactly what's going on in my lungs. I did point out that if anyone finds gold or diamonds when they scan me-they can't have them. But they're more than welcome to the blood clots. Amen to that.

The biggest problem now is the challenge to walk and stay upright. Anticoagulants have side effects: headaches, severe weakness and exhaustion, and profound dizziness. As you know, I'm dizzy enough already. So that's been a challenge. Then, of course, and saving the worst for last, is the tendency to bruise. I gave myself two big bruises after injections, but I've been doing this for six weeks, and I did a better job than the nurses did in five days. They gave me some massive bruises. They must have been in a hurry. 

My legs are so bruised that I look like I've been kicked by a horse (I've never been kicked by a horse, but if I had, it would probably look like my legs look now). I also bump into things-especially with the added dizziness, so every once in awhile I'll turn around and bump into something that would normally not bother me-but it would bruise (and hurt).

I have to admit that I'm so lucky that I got to the doctor in time to be diagnosed with blood clots. Apparently, if I'd waited much longer it would have been too late. So I'm sitting here and wondering that if I was a cat, I'd have gone through at least seven of my nine lives. Perhaps even eight. 

One of my very close friends said that I'm just always so unlucky. Actually, that isn't true. I'm extremely lucky. Every time I've had a very close call-and there have been way to many of those to think about-I somehow managed to survive. How much longer is anyone's guess. When I can stop bumping into things long enough to just sit and think, I'll have to decide what I want to do when all the injections are over and I'm fighting fit again. Or should I say when I'm fit again? 

I'm gearing up for Thanksgiving. I certainly have a lot to be thankful for. Plus-close your eyes if you're vegetarian- there will be turkey. And stuffing. Sweet potatoes. Cranberry sauce (homemade, too). I even might splash out on a bit of wine. I've got loads at home, but it's so old it can probably be used as very expensive vinegar. But I'll write as soon as anything is happening. 

Why is it that when a man asserts himself and stands up and fights for himself, he is looked on as a hero, someone who is admired for his forcefulness-but when a woman stands up for herself, asserts herself, won't back down until she gets results, she's called a bitch? Huh. There's something for you to think about.

 

Groundhog Day in Purgatory - and a week in Dementia Central

 It's either Groundhog Day or I'm secretly like a hamster on a wheel. It's been that sort of month since I last wrote. I was thinking of what to say since last time-perhaps something different, rather than the same old thing-and then the fertilizer hit the fan.

It started with severe chest pain- and I started to worry that the ablation had failed, and that I would have to undergo a third one. Needless to say, I just kept my mouth shut and hoped that everything would start to ease. But I had severe chest pain on my right side-and unless my heart decided to take a stroll into another part of my body, it looked as if I was having a lung problem. I became very breathless; I could hardly walk ten steps before I had to stop and do some breathing. Stairs were a problem. Everything was a problem.

I had a consultation with the immunology consultant coming up, so I decided to wait and tell her what was going on. So much for Groundhog Day...and for the wheel...

I was told to go to have a chest X-ray. I did that, and I waited. And waited. And waited. I finally had the X-ray and was thrilled to get out of the hospital after a four hour wait. The next day I had my infusions. I was told just before they started that I had to return to the imaging department for a CT scan. Why? I asked. I was told that the scan had been ordered. So I went. Grudgingly. Again, a lengthy wait. And another cannula. And more bruising up my arm because my veins are difficult to cannulate. So I went through that-and another three hours later I was on my way back.

Friday arrived, and I was feeling very rough-so I struggled to do my prescribed walk, and had to rest. Talk about feeling old and frail! Then I received a phone call that changed everything. It was from one of the immunology doctors. The X-ray and the scan showed blood clots in my lungs. I was gobsmacked. Clots? Plural? I asked. Yes, he said. Lungs? Plural? Yes-again. He told me to get over to A&E as soon as I could and ask for the medical team. Apparently the medical team expected me. So I made sure that nothing was cooking, all the lights were off, and I was on my way back to the hospital.

The short version: once again I  had a cannula inserted in my arm. I've got so many huge bruises up my arm that you would think I was on drugs. I sat, and sat-I was told that the bloods had to come back before they decided what to do. From 6pm to 10pm, I sat like a lemon, watching people come in and out, watching while patients who were waiting (it was an emergency room, after all) started shouting. And then I was told that I was being admitted. You could have knocked me over, I was that shocked.

Off I went-by wheelchair (now I really felt decrepit) to the 10th floor. I was taken to a room with three other patients. I wasn't told  that all three had dementia. Did I ever find out quickly!!

The woman next to me had been there for weeks; they were unable to find a care home for her. No surprises there, she was screaming from the time I arrived to the time I left. Where she got the lung capacity-and how she didn't lose her voice-are still a mystery. She screame so loud they could probably hear her in Liverpool. And she spat. And kicked. and scratched, and swore. At top volume, all night and all day for the five days I was there. And the other two-well, across from the screamer was Jill, who shouted, cursed, swore at the nurses-and at me-and showed herself to be a racist by the things she said to-well, everyone. And the woman across from me shouted every time anyone came near her-which was often, because she was incontinent and had a habit of taking her feces and playing with them, rubbing her face with her poo. Delightful, don't you think?

All three were incontinent. All three screamed, shouted, swore, and needed constant changing. And I was stuck there for four days and nights. I had no sleep, and I was, truthfully, ready to throttle all of them. I kept complaining and asking to be moved, but I was told that there were no beds (I seriously doubt that), and that I should ignore all of them. 

That is why I started calling the room Dementia Central. I complained to my consultant when I left, but she couldn't do anything either. What moron takes a person who has no sign of dementia (a normal person), and isn't incontinent, and puts her in a room with a bunch of screaming, abusive crazies? 

At least I've still got my hearing-and my sanity. And blood clots in both lungs. I'm now injecting myself daily with anticoagulants to try to get rid of the blood clots-which are very dangerous. I get to have so many scans that it won't be cancer or blood clots that'll kill me. It'll be the radiation.

I was so shocked by the horrific experience that I told my GP that if I ever develop any form of dementia-Alzheimer's or any other, because there are several-I will fly over to Switzerland (assisted suicide is legal there) and go to Dignitas and that will be the end. I really, honestly, never want to end up like any of the three "roommates". I felt terribly sorry for all of them-but only for the first sleepless night. It got very wearing, very quickly.

If anyone is caring for someone with any form of dementia, you should get a medal.

Now I'm going to do what I started to do on Friday: laundry! Boring, but consider the alternative...

Mickey, Minnie, and the whole bloody extended family

And here I was, congratulating myself on refusing to be grumpy. Grumpy: no, pants, yes. We all need our pants. 

This positive change of heart nearly worked, too-until I nearly had a seizure when I saw a mouse run across the kitchen floor. I think that I shouted "shit!". And I figured that if there was one, there must be an entire family. So I started spraying clove oil everywhere. Clove oil, or so my neighbor (a mouse veteran) tells me, will put off mice. They don't like the smell of clove oil, or peppermint oil...

I tried to put down clove oil everywhere; all I succeeded in doing was nearly asphyxiate myself in the process. The smell of clove oil permeated the flat. To be less PC, the whole place stank of clove oil. I even smelled of cloves. Some people moved aside as I was coming up the road. Perhaps that's the secret of getting people to avoid crashing into me as they're tapping away on their phones-or are simply completely unconscious. Clove oil. Come Christmas, I will be in hiding.

Well. This is what preoccupied me since I last wrote. The weather wasn't great: rain and more rain, cooler then hotter, and we're supposed to expect very hot weather all next week. My attempts to stay upright were very so-so. When the barometric pressure changes, when it rains, when it starts to get dark-all these weather changes seriously affect my attempts at something resembling balance. But-I didn't fall over. I call that progress.

I finally had to give up trying to be kind and get the mice to go plague someone else. I used clove oil. I then used peppermint oil: nicer, but then I smelled like a candy cane. So did the flat. I felt sick from all the smells, and the mice-the last time I looked, they were line dancing. So I called in the big guns: mouse poison pellets. Will they work? I bloody hope so. Otherwise I'll have to sleep in the park.

As for Mickey and Minnie-and the rest of their family-I said this morning as I put down more poison (the little gannets scoffed everything I put down last night), they have a choice: leave or die. If necessary, I'll have to call the mouse patrol (exterminators). 

I'm not grumpy, though. I'm too busy to avoid asphyxiation from clove oil... 

Grumpy Pants: A new and timely lifestyle

 I don't usually call myself names-unless they're things like wonderful, and fabulous, of course. During lockdown I decided that everyone would benefit from being as kind to themselves as possible, given that we might all be dead tomorrow anyway. Let's all give ourselves compliments - if we don't, who else will?

But-this morning I looked in the mirror and saw Grumpy Pants looking back at me. And I went into Marks and Spencer for some food, and spent some time looking (carefully, obviously, because who wants to have the crap beaten out of them because some moron says they're staring) at other shoppers. It was an eye-opener, that is for sure.

If I'm Grumpy, then I didn't have to look far for the other six dwarfs. They were coming past me two by two. 

During the pandemic, people were uncharacteristically polite. Some were even helpful. And now, three and a half (approximately) years later, they're all back to their nasty, rude, obnoxious, stupid selves. They don't look where they're going, they expect someone on crutches to sprint out of their way, and most of them are just generally a huge pain in the ass.

So Grumpy is justifiable in my view. That should be the number one baby's name this year. Or any year. I admit to sometimes wondering what would happen if some nitwit on a bike rode up onto the pavement (which they do regularly), no helmets, no lights on their bikes, no license plates (handy so that someone could identify the body) and some elderly bloke on one of those four wheelers rode into him and tossed him in front of a moving bus... I'm waiting for that to happen, just so I could have a good laugh. 

Grumpy is good. Irascible might be better...

Crashing and Burning: Only the Strong Survive

 I'll say one thing about life: it's never boring. Even when I think it's boring, something invariably happens to liven things up. 

There I was, with my lovely new laptop, ready to have a go-with no instructions, either-so-either brave or foolhardy. But it didn't matter, because I collected it, struggled to get it home without doing my back in (or falling over)-and bang! Wallop! It was flu. Not Covid. Flu. Not even something exciting, just garden variety flu. Struck down by the bloody flu. Grrr...

So that's where I've been since I last wrote. All around me, people were dropping like flies. Every time I turned on the newsfeed, every time I listened to the news, it was either one tragedy or another or-someone well known reeled over and croaked. And some of them were young (ish), too.

I've been in a real crap mood for the last few days: irascible, short-tempered, like a snapping turtle. Last night I figured out the problem: scan back thirteen years to the same three days, and you'll find that the incompetent morons at the Royal London immunology department vey nearly killed me. Gentamicin. The dirtiest word in my vocabulary (not that I know many, I just keep repeating them over and over again).

I do find it difficult to let go of that whole situation and the resulting injustice of it all. I know that I have to let go in order to move on-but on days when it's raining, or the barometric pressure outside changes-and this is London, so the weather never stays the same for long-I stagger all over the place. The answer to will I either get a ground floor apartment or someone to help me-absolutely not. Not yet, anyway. I just refuse to give up. 

I said that I want to have a t-shirt made-a copy of the one I saw a few weeks ago. It said:

I do not spew profanity. I enunciate perfectly. I'm a fucking lady. 

That was so funny that I sent it to one of my friends-the one who would find it funny. I might have one made for her for Christmas-if I can find someone who will make the t-shirt for me. I had a brilliant store years ago, they would put just about anything on a t-shirt. But-they're in New York. A long commute.

So that brings us up to date-for now, anyway. My hope is that I will be able to stay healthy from now on. I got the look from the clinic when I went to have my infusions: it said: where is your mask??

Meanwhile, I'm going to do my best to keep my mouth shut and stay out of trouble. We all know just how long that's going to last!

Crashing and Burning: The rise, fall and rise again of yours truly

 I'm dragging myself around and feeling like I've been dragged through a hedge backwards. It's been like that since I last wrote. 

You would hope that all the consultants would see me on the same day-in the same week-but no, that would be an ideal world. An ideal world would be not having to see any consultants at any time-ever. But I am getting closer. I've been informed that the vestibular condition is quite permanent; the dizziness is chronic, I should make sure that someone is caring for me just in case I catapult myself down the stairs again. As if!

I'm relatively discharged from anything to do with neuro-otology. The consultant feels that there is nothing more that can be done. Such optimism is so encouraging. I've got an appointment with him next May. So I've got some time to prove that he's very, very mistaken. Unless I'm living in cloud cuckoo land, I've got a few months to increase the amount and duration of my eye exercises. I also really need to have a positive attitude to prove everyone associated with vestibular medicine that I can heal myself, and that I'm not giving up. The fat lady hasn't sung yet.

This week I went along to another hospital to have the loop recorder removed from my chest. The loop recorder was inserted nearly four years ago; it isn't a pacemaker, but merely a heart beat monitor. Every time I had a tachycardia attack it measured the number of heartbeats and the length of the attack. It was incredibly valuable; I had the ablation-the first one that failed-because the attacks were dangerously long, and increasingly frequent. Same again for the second ablation. But the battery decided to die a few months ago, and the thing was sitting in my chest, deceased (thank goodness it was deceased, and I'm not!). So I made enough noise to have it removed. 

That was a laugh. The person who removed it was a nurse, being trained in loop recorder removal, and she kept losing the part that needed to be pulled in order to remove the whole thing. She kept digging. I finally asked whether she was used to doing these procedures. All she did was glare. So I decided that discretion being the better part of valor meant: shut up.

That was on Wednesday. On Thursday morning I did a route march into the West End-and I bought a new laptop. My old one was twelve years old, was brilliant, and I used it every day. But it expired just before lockdown. So I had to use my phone-and then the library's computers. The problem with going to the library is that a lot of people are thinking the same thing, so I have to get there when they open. Another problem is that-and I learned this from actually seeing it for myself, which was disgusting-people will wipe their noses with their hands and then use the keyboard. Gross. Made me wonder what else they wiped with their hands before (and, in some cases, during) using the keyboard. I always used an antibacterial wipe before I used the computer. Ewww... but I finally went to get my own. Hooray-that's all I have to say.

Actually, it isn't all I have to say-because I now have to figure out how to use it! It isn't like my old one. This one requires double-tapping. Double-tapping!! What????

You see where I said rise again. I now have to use the little grey cells and sit patiently-and we all know that I was born without patience-to work out what is supposed to go where. I have to admit that sitting and getting used to a brand new computer that doesn't behave the way my old one did-fourteen years ago!!-is going to be a challenge. I've always been up for a challenge. Now I've got several. 

I'll let you know how it goes. It's possible that it's going to drive me to drink...

Fight Club...Fight Week...Fight Life

 Now is when I really needed my suit of armor, shield and sword. Maybe a very large hammer. Last week I went into battle-unarmed except for my strong and sometimes very blunt tongue. And did it work? Hell, no, I'm still in combat. I seem to be always in combat.

A week ago (Monday) I decided to cancel an order for a sofabed from a store called John Lewis. If you live here (my sympathies) and shop here, You'll know the store. You'll also know that the employees pride themselves on good service, good merchandise, etc, etc. Everybody wants to be upmarket. Except- they aren't.

I cancelled the order on the Monday, and that started a ridiculous amount of time trying to get a refund. I realized that, when it comes to John Lewis, the left hand doesn't know (or care) what the right hand is doing. Every day (including infusion day) I was on the phone, chasing customer service for a refund (nearly £800, so I wasn't going to let it go). Every day I was given a different story-and it was a load of BS, because all they had to do was issue a refund.

On Monday it will be an incredible two weeks since this fight began. I've been in combat mode for nearly two weeks, and JL refuses to issue a refund. And there is no excuse that holds up. I did everything right (I know. I checked. You know by now how much I believe in doing my due diligence). The only thing for me to do is to present myself in the Oxford Street store and refuse to leave until the idiots involved issue a refund. And I told the last person I spoke to yesterday that if I have to do a day trip to John Lewis, I will be very loud-and I will call the tabloids for some backup. So let's see what happens. I'll let you know.

What I find interesting is the fact that people in this country are very quick to take advantage of older people (especially women), and they see someone who is on an elbow crutch and clearly has a mobility challenge- and they will take full advantage of that person. I thought, after so many years, that this only happens here. The truth is that it happens everywhere. 

So I was on strike on Independence Day, and I hope that everyone celebrated! I contacted everyone at home to wish them a happy 4th-as I always do-but I felt like I missed something this year. I did: fireworks! Oh, dear-I'm out of fireworks. July 4th just doesn't seem the same. So in November-when fireworks are sold to celebrate Guy Fawkes Day-I'll just replenish my stock.

Every year-up until the pandemic hit us all- I went with a small group of friends to the nearby park, found an open space (so we wouldn't set the place on fire), and set off fireworks. People actually enjoyed it-and we made sure that we cleaned up quickly and left before we were caught (fireworks on any other day but November 5th are illegal and someone could get arrested. Murderers get off-but anyone celebrating July 4th-well, that's a terrible crime),

So we're now up to date, and I will keep you updated on the John Lewis combat story. Always stick up for yourselves. Always. It's pretty likely that nobody else will.