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.

Three weeks and I'm still not dead

Technically, it's been five weeks since the ablation-and I'm still not dead. But who's counting?

It's been so tough. the boiling heat of the past few days haven't helped. I'm definitely not a hot weather person. It goes above 20C (68F), I start to sweat, my hair starts to frizz (a white person with an afro-not a pretty sight). Then I get very short-tempered - even more so than usual. I'm from the land of air conditioning. I'll need a bigger fan. Or three. Or sleep in the fridge.

I went away for a week. I just had enough of people crashing into me because they didn't have the brains to look up from their phones. Then I remembered where I'm living. Stupidity is the norm; after so many years I shouldn't be surprised. So I picked myself up and went to a small bed and breakfast outside London. Trees, grass (the kind you walk on), a very small, one horse town (maybe even half a horse), and one main supermarket. One. No butchers, or greengrocers, but several hairdressers. So many hairdressers! People clearly have their priorities right...

And the heat really hit hard on Friday. I felt like I should just have someone put an apple in my mouth, stick me on a skewer, put me above the concrete, and keep turning until I reached well done (about twenty minutes). I felt sorry for the smokers. It was so hot and airless that I could barely breathe. Imagine someone who smokes two packs a day. They'd be dying. But-according to all the research, they're probably dying anyway. This would make it faster.

Tomorrow I will get weighed. I'm so (not) looking forward to it. I'm just bored by the whole thing. And two of our nurses just went out on maternity leave last week. Two-out of four. It must be something in the water-I know, I was just making a very bad joke. Blame the heat. I did say to one nurse last time that they couldn't have timed it better. Consultants are going out on strike again next month, nurses will be doing the same, and all the patients will have to learn how to cannulate each other. Hey - it'll be fun! More scars!

Just for a little perspective: my friend in Florida emailed me to tell me that last week the temperature in central Florida was 110F (roughly 44C). In the shade. In the shade! So who am I to complain about 30C? If you're in Florida, that's practically winter.

Global warming? What global warming?

Hell wasn't interested-si I'm still here, alive and kicking-just not as high or as fast

 Three weeks ago I was panicking about the ablation-walking around the house, wondering if I should make a will, and looking at the kitchen (which still needs cleaning) and thinking that if I croaked, the kitchen is a total mess. Nervous? Apprehensive? WTF-someone I don't know, in a place that's unfamiliar, is going to poke around my heart and burn some tissue-and what if the person is a junior doctor and has no idea what he's doing? Nerves? What nerves?

Well. Two weeks ago today I was at the hospital, where I had to wait seven hours for the operation. Seven hours! I probably could have walked home-and trust me, I was so tempted! But when I got there, I wasn't sure how long I was going to be waiting. As it turns out-and they told me seven hours later!!-they didn't have a bed for me, and they wanted to keep me overnight, so I had to wait. And sweat. 

I went outside after I checked in, because they hospital was in chaos: building works. So I walked up the road, and I could have sworn I saw barbed wire. Turns out that it was barbed wire. A notorious men's prison is just up the road. And later, when I sat in reception and was talking with some other patients who were waiting for various procedures, one told me that where Wormwood Scrubs ends, the other side of the wall belongs to Hammersmith Hospital. Of course, I had to comment, didn't I? I said that was wonderful, because if a prisoner got stabbed or sick, all they had to do was bring him to the wall and throw him over. No need for an ambulance.

The man who was standing there, laughing because he clearly thought that was funny, turned out to be one of the two consultants who performed the surgery. Now that was funny...

I'm not going to give you all the gory details of the surgery, and my stay, and how excruciating the whole three hour procedure was (I wasn't allowed to go to sleep, they needed me to tell them when I was in pain-which was all the time), but I will say how relieved I was when they wheeled me into a ward at about 8pm.I wasn't allowed to move for a few hours, but I wasn't bothered about that. They told me that I needed to rest and not do anything strenuous for the next two weeks (no housework. Yippee!!), and I could start walking a little after a week or so. They also said that I will know for certain in three months if the procedure was successful, since it takes that long for the heart to heal.

These two weeks have been very difficult. I have done too much walking, but I haven't been doing a lot of bending, lifting, or doing anything strenuous (I asked them to define strenuous. They just looked at me and shook their heads. Duh...)

So I'm most definitely back. I was told that I would be extremely tired for a few weeks, and that was definitely true. But when I got back, I emailed everyone and told them that I hopefully will not have any more attacks of tachycardia, because the extra pathway in my heart is now sealed. And I jokes that if there's a Hell, nobody was interested. And if there's a Heaven, nobody is interested there, either.

I'm going to be around for awhile-at least, I hope so. We never know for sure, do we? I just hope that I hang around long enough-and healthy enough-to be a pain in the ass to as many people I know as possible. Now that is what I call an achievement!

Overwhelmed, Underwhelmed, and just plain whelmed: back into combat

 Here I am, nearly a month later, a bit scarred but otherwise undaunted (mostly, anyway). I was all set to write again after a week-but like I said, back into combat.

I had a massive attack of tachycardia that lasted nearly an hour. And I was on my way to an appointment when it happened, so I was out and about and in a seriously nasty part of town-one where older people who are obviously mobility challenged are prime targets. Frankly, I was too sick to care. 

I did manage to make it back, but then I had to get from the bus stop to home-which would normally have taken me ten minutes, but this time took me nearly a half hour. I cannot believe how relieved I was when I stumbled through my front door and headed straight for bed. Better that than fall flat on my face. After September's bad fall, I'm not allowed to fall again. Ever.

If you want to be completely incapacitated for awhile, tachycardia is the way to do it. So I had to do combat to get the ablation moved to-next week. Waiting a month is doable; waiting until Christmas (cardiology's first option) is not. So now I have to get ready for someone I don't know to shove a catheter up a vein in my groin and into my heart, fixing the electrical system which has gone haywire, and hopefully this time it'll work. 

Are there risks? Well, yes. I received a phone call from cardiology yesterday, giving me all the details: time, place, must be fasting, bring my medications, etc. Then came a little information about the risks involved: bleeding from the incision site, infection, fluid around the heart, damage to the heart which would require more surgery and possibly a pacemaker (just what I need: more hardware in my chest), and, of course, the big ones (saved for last): the possibility of a stroke and/or death. 

Just what a hospital phobic patient needs to instill faith and confidence in yet another surgeon. But-it's either that or suffer from tachycardia until the heart is damaged permanently. It's a bit like playing roulette, isn't it?

So that is what my last few weeks have been like. Perhaps I should get a suit of armor. Now there's an idea! Only it would be too heavy, I would probably waste no time falling over, and even if I didn't - how would I pee? This, of course, raises the question: how did the knights of old pee?

I got a very pointed email from someone who has been following this blog for several years. And she was not very happy with me. She pointed out that most people want to lose weight, not gain weight, and that I should  quit whingeing about being so underweight. Nobody, she said, wants to hear about someone who is unable to gain weight. So I had to point out that I have been dieting for most of my adult life. I have. I've tried just about every diet there is, even some of the crazy ones. Now I'm done. I will have to stop asking the people who should know-or at least, try to find out-what is going on before I'm thin enough to slide under the doors instead of walking through them.

The latest, before I get off this really tedious topic: I saw a nutritionist yesterday,  she weighed me, and I haven't lost any more weight. She commented that there are people who are walking around with extremely low BMIs- really seriously skinny people ( I said that they look like stick insects), and they're absolutely fine and healthy. Grrr... so up the calories and add lots of fats, and stop worrying because it'll just make things worse.

Oh, I completely forgot to mention the coronation. Oh my goodness, the coronation. There was a coronation. I watched some of it, and was astonished at the huge crowds that took over central London. The armed forces were amazing with the detailed and well executed parades. The horses were gorgeous. The coronation concert on Saturday night was pretty good, with Lionel Ritchie getting everyone up and dancing to All Night Long. Take That closed the show with a show stopping finale-they were fantastic. And the best part of the whole concert. You can tell I'm not a royalist. But it was a bit of history, worth seeing, and I somehow doubt that I'll see another coronation in my lifetime. Woohoo.

Now I'm in need of coffee. And biscuits. I'll be back soon...

Once again, the s**t has hit the fan...even the chocolate bunnies couldn't save it...

Here I was, going to make a joke about the revenge of the chocolate bunnies, when all hell seemed to break loose.

For starters, I got told off for complaining about not being able to gain weight. This was from people who are always on a diet. Believe me, for years I was also on a diet. And now, no matter how much I stuff my face, I'm unable to gain the weight. So trust me when I say that I know what it's like. And I told my friend who is always whingeing about the fact that she's too fat (she isn't) that she should stop worrying and just enjoy life. What an oops!

The colorectal people took nearly five weeks-FIVE weeks!!- to suddenly decide that the biopsy results are inconclusive. They were supposed to order some really important tests-but didn't. Instead, they discharged me without contacting me about anything - excuse me! Here, I thought that I was the patient! They left the tests to my GP, who has been jumping up and down and calling them incompetent (they are). So the immunologist is dealing with everything-and it isn't even her job to do that. But nobody else will, so she's stuck with me. For now.

And I'm still extremely underweight and feeling like a bucket of fertilizer (I'm being so polite, aren't I?). Nobody has a clue. And the best thing I can do at the moment is keep eating, but be mindful of the things I'm eating. My stomach tells me now when I've eaten something it doesn't like.

That is the whole colorectal story, and how, when the NHS is good, it's fine, but when it's bad (like it has been), it is a total pile of shit (so much for being polite). But-at the moment, there are other things on my mind. Like: the complaint I made with the Ombudsman about the London Borough of Haringey. 

Now-bearing in mind that in the many decades I've lived in this country, the only council property I've ever rented is this one, it has been a real eye-opener. No wonder the tabloids are filled with horror stories about abuse, rats (the two legged as well as the four legged), crime, everything you can possibly think of - and nothing is ever done to help people who need it.

The Ombudsman found in my favor-did I tell you? And I've been given an award, while the council has had a strongly worded criticism. I'm still waiting for the money-and if the council doesn't cough it up, on Monday I'm to inform the Ombudsman. That won't go down well, since Haringey is one of the worst boroughs in London.

To make matters even greater-I received an email from the Ombudsman last week. The complaint I made about favoritism, incompetence and racism on the part of the tenancy management team is now being taken up by the Ombudsman as a separate issue. I seem to be making friends everywhere in the council, don't I? 

The lesson here is clear-at least it is for me. Nobody will speak up for me if I don't speak up for myself. Honestly, if you're a woman (of any age), and you're on your own, there are people who will abuse you, threaten you, try to frighten you, do whatever they can to assert their authority (even if they have none). If you don't stand up and fight for yourself and your rights, don't count on anyone else to do it for you-or even to help you do it for yourself.

Maybe I should invest in some boxing gloves. And a suit of armor...

The Battle Continues

 The one good thing about this past week is that I'm no longer blowing myself across time and space (that means: no farting). I was squeaking when I was walking-it was, I suppose, hilarious. At least I didn't have what I've been calling for years an SBD (Silent But Deadly), 

The problem has been the fact that I've done nothing but eat, sleep, wee and poop. I might as well have been a dog. There isn't even anyone to come and scratch my ears...

Easter is this weekend, so nobody seems to be doing anything over at the hospital. I've heard nothing from anyone-except the immunologist, who told me last week that more tests are going to be done. More tests! They are really clueless as to what is causing all this weight loss. My friends are telling me that I have the ideal opportunity to eat whatever I want, as much as I want, and not worry about losing weight. Huh.

If I lose more weight, I won't have to open any doors; I can just slide under them.

Tomorrow I get weighed. It's infusion day, so I'll find out what other surprises are in store for me. I just have to accept that I'm at the mercy of doctors who are clueless. Maybe I'll be one of those people with something so extraordinary, so very weird, that it'll be written about in medical books. As long as it isn't posthumous, I don't care. I told them to fix it. 

So here we are at Easter. I've bought my Lindt chocolate Easter bunny, as I do every year-I might even splash out on a large Easter egg. Oohhh, all those calories! Who cares?

Happy Easter, all. Eat, drink plenty of wine or whatever, and don't count the calories. It's Easter. Calories don't count.