Saturday 24 March 2018

The joys of hanging upside down-if you're a bat. Or a monkey.

I'm actually able to see to blog. I'm actually able to see to walk. Miracles happen. I had the second journey on the upside down chair-which looks suspiciously like it came out of Men in Black 3. If you know the film, you'll know the chair-only this one is white. And the person who does the hanging has to do it manually.

I'm told that the thing is on loan from somewhere in France. They lend the hospital the chair, and all the data goes back to France. Fair deal. I suspect that whoever invented the chair is the same person who invented the speculum. And all women know what a joy that is!

This week has been relatively quiet-except for the news, which is filled with more terrorist attacks and more stabbings. Children as young as ten are being arrested for stabbing other people. Stabbings, shootings, acid attacks, and just plain, ordinary beating the crap out of other people. It's like the wild west-and they smugly tell us all that the US has more crime than Britain. Hmmm.....

I now have an MRI coming up next week-two, actually. I've bashed my knee (by falling) so many times since the gentamicin debacle that I've lost track. Now some genius thinks that it's so damaged, it needs replacing. As if. I asked what people used to do before the (very lucrative) advent of knee surgery. I was told that they suffered. And limped. I'll limp. I'll pass. When it comes to the medical profession in this country, I've learned a very hard and painful lesson: never trust anyone. They're like lawyers. I don't trust them, either.

I went to see my acupuncturist friend on Thursday. It's a long journey: about 3 hours each way, sometimes more if there's traffic. But it's been worth it. I've now been twice since my spectacular fall on my head, which was seven weeks ago (yeah, I'm counting. These are things you don't forget easily). And it's helped with the headaches and the extra dizziness. Even the chair helped with the extra dizziness-and the wobbling eyes. So, I'm on the mend, although two consultants told me this past week that it's going to be a long road back. There are a few consultants whose opinions I trust. I've now seen all three, and they all say the same thing: you did WHAT??? Yeah, I know. I could have made better choices. But I didn't. Boohoo.

Part of a major concussion (so I'm told by the neurologists) is the tendency to be depressed and fearful: fearful of it happening again without warning (like last time), and depression, because this has been a major setback. But also I've been noticing things again. I notice other people. I notice my surroundings. I begin to notice as much as I can, and then I get depressed-because I can feel my life whizzing by, and I don't feel like I've accomplished much. I've developed this underlying dissatisfaction with my life-and watching the news (or reading it, or hearing it) makes everything substantially worse.

Today the students who survived the most recent killings over in the States have mobilized-and there are around 500,000 demonstrators who are in Washington today, protesting against the incumbent moron and his pals in the NRA-and government-who pay lip service to being upset over needless killings but yet do nothing to change the laws to stop it.

And now we have shooting crimes here, too. And nobody does anything. It really hurts me to see what is happening in my own country, and it hurts even more to know that we could have elected a baboon and it would have done a better job. What is going on with this world, I ask.

Best to keep our heads down and just get on with the business of living, being cautious but not paranoid, and taking every day and living it to the best of our ability. Am I able to do that? I've never been able to do that! I'm still looking at the past and the future, and forgetting that the present is the only thing that matters.

Wasn't that deep...enough philosophizing, I'm off to Starbucks.

And I'm going to blame all this over-thinking on the concussion. What the hell, I'm going to milk that for all it's worth!

Tuesday 20 March 2018

One Damned Thing After Another

Someone told me that Churchill said that. How right he was! I'd shake his hand and tell him so-but he's dead. One damned thing after another.


I was hoping to bring you up to date last week-but that was another week from hell. I'd been contacted by Colin, who's the one who hung me upside down in the now famous chair. I had an appointment to have it done a second time last Friday, seeing the physiotherapist first. That would have been a bit scary-it was a bit scary, since I had two weeks of severe dizziness after the first time.


But-on Monday, I got a call from one of the immunology nurses. I have to say that I wasn't really surprised, given the state of the NHS. The immunoglobulin that I have been taking every two weeks for the past-eight or nine years, it's been so long, I don't remember (I'll blame the forgetfulness on the concussion. Believe me when I say that I'm going to milk that for all it's worth), is being discontinued. Everywhere. Nobody can get it anywhere in this country. Why? Too expensive. So they're opting for one that is much cheaper.


As you can imagine, I was really upset. I was even more upset at the nonchalance of the nurses, who just said that I shouldn't worry, I'll be fine with it; if this one is problematic, they said, we'll try another one. Cheap is cheap. Ah, "you'll be fine". That's what they said about the gentamicin. And that didn't work out so well, did it? I said that-and I repeated it several times, until I went to the hospital to have my last ever Kiovig infusions. Next time I go onto the cheap stuff. Maybe I should take this opportunity  to make a will.


I even emailed my immunology consultant-who couldn't be bothered to reply. Doctors: so quick to charge, so quick to line their pockets-but so unwilling to even email a worried patient outside office hours. They don't get paid for it. Am I cynical? Hell, yes-but also truthful.


To add insult to injury, on Wednesday all my services went down. No wi-fi, No broadband, television, phone, nothing. I could only message people on whatsapp if I walked outside. I rang Virgin Media, and all their call centres are outside this country, in places where they don't speak English very well (if at all. Cheap labor). I finally got through to someone who did some diagnostics and told me that the router is no good. They'd send me another one, which I would get on Friday.


Thursday I had the frank and open discussion with the immunology team, and my infusions. Friday I went to the other hospital to see Emma, my physio. When I told her that I had a 2pm appointment with Colin, she said that she was going to find him to see if he could do the chair more quickly. Bless him, my appointment with Emma was for 8:30- and Colin did my test before his first patient, which meant that I was hung upside down just before 9am. It all scared the crap out of me-again-but the good thing was that it showed that the chair dangling really works. Everything that had shifted in the fall was moved back again. I could have hugged him, but he would have had a coronary.


Then I had to get back home, and that was no joy. I wasn't as dizzy as I was the first time, but I still had trouble getting back without falling over. That's twice now that I got in the door and congratulated myself on staying upright for the journey-which was very long, since I had to keep stopping until I felt that I could move ahead without cracking my head open again. But I did it. Not only that, but I wasn't sick everywhere. I did ask Colin if anyone had every been sick after being upside down. He said that only one person-out of 200-had been really sick. And he looked a little concerned. I said that I didn't feel sick either time, only dizzy. He was reassured-but still couldn't wait until I left. Just in case!


And the router-ah, the router! Virgin sent me a hub, with no instructions, but no white router. I had to ring them again, and I was told that I don't need a separate router, it's all in one hub now. Thanks for telling me, guys. Only the hub didn't work (I did say that this was the week from hell, and it was just one damned thing after another!!).


So I had to wait until yesterday for the Virgin technician to bring another hub and hook it up-and he waited, just to be sure that this one was working. I went from Wednesday to Monday with no services-and I was really irritated.


Isn't it odd that we were able to go for years without mobiles, internet, whatsapp, social media, Google (I still call it the Great God Google, because I use it so often), and now when the systems are down we don't know what to do with ourselves? Anyone else find that a little worrying?


What did we do when we didn't have all these conveniences? We used the telephone. We wrote letters. We had social contact with each other. It seems like it was a simpler (and cheaper) world.


And I still have this bloody concussion-induced headache, some pain where I hit the floor, and all the side effects that go with a serious head injury. Nothing was broken, but everything was severely shaken, and I'm back to having some of the problems I had years ago. That just tells me to be more cautious, not to do stupid things or take silly risks. I just blame the memory thing on the concussion-or on middle-aged CRS (can't remember shit). Whatever works.


Now it's Tuesday, seven weeks after my head banging episode, and I'm off to Starbucks. I've got wi-fi. I've got Google. Life goes on.

Saturday 10 March 2018

Buckle Up: the Art of Hanging Upside Down

I survived another week-and I managed to stay upright. Oh, joy. But-I received a call from the hospital on Thursday, telling me to come in next week for another session with the dreaded chair. Dangling upside down again should put everything that was shaken loose back into place. Hopefully. Then I'll be back to the usual balance problems, but they will-again, hopefully-improve with time. Hopefully. Maybe. Perhaps. We'll see.

I was told a few weeks ago that I should get as much rest as possible, to allow the head to heal. I still have a lump on the back of my head, but the headaches aren't nearly as bad as they were a month ago. And-it's been five weeks since my head-banging incident. I have been thrown out of the Tai Chi class, as you know-but really, that's a good thing. I felt very conspicuous when I made an attempt at a comeback two weeks after it all happened. I'm a bit infamous there, so at least I can wait awhile and then find another class somewhere else. Thanks to the Great God Google, I've been looking.

I know that I'm on something resembling the mend when I'm getting impatient to do things. If I get any more laid back, I might just ripen and rot. I'm not a sitting at home and learning to knit kind of person. I'd love to be able to knit, but-forget it, there would be a great deal of blood loss and swearing. So needlework isn't for me. I'm still trying to figure it out-especially since the concussion has caused me to really tire easily. My get up and go has got up and gone. But I'll figure it out. Eventually. I'm certainly mindful of the fact that I'm very, very lucky-this could have been so much worse. Someone is looking out for me.

Wednesday 7 March 2018

Attack of the Beast From the East

Good name for a bad movie title. But no, the Beast from the East is what people were calling the horrendous weather coming over from Siberia. As much as I make fun of the way the Brits handle (or don't, as the case may be)a millimetre of snow on the ground, or a leaf on a railroad track-last week was something else.

Snow was just dumped everywhere in the country. Scotland got hit the worst-but everyone felt the cold, the wet, the ice. I was snowed in for a few days last week-but I risked life and limb by going out on two occasions, just to the supermarket, which looked like there had been a bomb dropped on it. Shelves were empty. I also walked down the middle of the road to get there, figuring that I wasn't going to take my chances on the icy pavements. I slid a few times-but didn't fall over. Miracles do happen.

The Beast from the East...I'm still amazed that people are paid to make up these titles. Huh.

Now it's a week later, and we have - rain. What a shock that isn't! But the aftereffects are noticeable everywhere, with people in places in London who have no water (broken pipes), What a mess.

Now it's been five weeks since my rather spectacular catapulting myself into unconsciousness. The week before last, I went to the neurology hospital to see my vestibular specialist. It was supposed to be a routine visit-but I told him what happened, and he examined me thoroughly, and told me that I am very lucky that I didn't have worse damage. Then he suggested ---the chair.

The chair is on loan from somewhere in France, I think, The object is to strap the patient in (seriously), wire the poor unsuspecting fool up to a computer-and then turn the patient upside down. Yes, I did say " upside down". All the data is passed to the computer, and this is supposed to help normalize a problem known as BPPV-which I never had before, but happens when you fall and scramble your brain. Think scrambled eggs, and you're pretty close.

So I got strapped in, wired up-and then blindfolded. I asked whether I was going to be electrocuted-honestly, the thing was scary. And the two techs kept telling me to keep my eyes open. In the dark. I heard clanking, and banging, and thumping-then over I went, first on the left side, then on the right.I spent a long time upside down. They did ask me how I felt. I said: I'm upside down, how do you think I feel?"

So it's two weeks since the dreaded chair, and a week since everyone fought the beast-and I have to go once more to get another visit with the chair. My head is better than it was five weeks ago, and thank goodness that it's five weeks later. But I still have extra vertigo, and another go with the chair should fix that. Allegedly. As long as they don't drop me on my head.

Okay, so I know that I had a very lucky escape, and that'll teach me that not everybody loves a smart ass. I shouldn't have done the class. And I have been kicked out of Tai Chi. I saved that for last.

Matt, the instructor, told me not to come back until he could speak to my consultant and discuss whether or not I can do the exercises. He has no medical training, what the hell!

I said no-he has no right to that information.So that was the end of Tai Chi. But I can find classes elsewhere, so that's what I'll be doing. For now, I'm just going to-Starbucks, where else??