Update 1st March
Had a reasonable night’s sleep with only one blood test at 2am – not too bad.
Woke up at 5.30 and listened to Wake up to Money for a bit while dozing, then woke up properly at 6.30.
As it was quite dark, we had a light show when the staff were trying to get the right lights on. The light switches aren’t labelled so it’s pot luck as to which bed’s light goes on!
Realised it was St David’s Day and that as I was in here where there is a no flowers policy, I wouldn’t be getting my usual present of bunches of daffodils. This was lessened by the fact that Sian has posted me some virtual daffs on Facebook – thank you, Sian!
Tea man came with breakfast. He has been on duty for several days and now knows I have bran flakes and tea with no sugar for breakfast. I surprise him sometimes by having coffee (but he knows that I have sweetener with coffee). It just goes to show that everybody can make a contribution, and it makes a difference.
Mady, the day nurse today came this morning to check my medications and the timing of the PEX. PEX this afternoon, so meds ok. “You’ve got a lot of medications!” Damn right – I had 12 tablets of varying sizes, so had to do them in groups of 4. Unfortunately, the last lot didn’t go down so well, and I was left with a nasty taste in the mouth. A biscuit was tempting, but I resisted.
They are going to try to blitz the sugars today, so I had a dose of 20 units of insulin – the highest by far yet.
The NMO lady ( I must find out her name) came to have the chat and check how I was doing. I think I’m doing ok, as I am getting more movement and strength back a little bit. As she was here, Busi (the PEX nurse practitioner) arrived to set up. A bit of confusion, but it had been long enough since my meds, so all ok.
As I’d had a bit of a wobble with the blood pressure yesterday during the PEX (at one point it was in the 80s over 48), and because I had had a calcium shortage, Busi gave me some IV calcium. It was given manually IV and took 10 minutes – when they do it on the unit, they have a pump. I felt really sorry for her as she had to sit holding the syringe and pressing it all that time.
When they take the plasma with the antibodies out, they replace it with albumin. The fluid they use is called Alburex. Today I had 3 litres.
It worked well and was all over in 75 minutes. The NMO lady came back with the next two booklets – Living with NMO from Fatigue to Energy and Staying Active with NMO. I have read them (they aren’t very long) but thy have made me a bit despondent. The NMO lady will be having a chat with me, as will other people. I think I’m in for meeting a lot of people!
As it is St David’s Day, I am watching on I player The Taff – the River that made Wales. For those that haven’t seen it, it’s ( clue in title) the story of the Taff form the source in the Beacons to Cardiff. There is a lot about the fishing (the presenter is a fisherman), and the amazing recovery the river has made since being declared “dead” 40 years ago but also about the history. I’m halfway through episode 1 and in Merthyr at the moment.
Lunch was interesting – the bed stopped working, so I was half sat up. The table didn’t fit over my knees, so I had my plate under my chin. It was very funny!! I had orange juice, 5 bean salad and yoghurt.
I was very tired, so fell asleep while listening to the news. When I woke up, there was a note from Nina, the specialist NMO physio who had come to introduce herself. I won’t see her now, but she is in charge of my physio and will liaise with the rehab physios here and wherever I go afterwards.
Then I had the bed bath (bed started working again, so it was probably a loose connection – more automotive connections!) and - joy of joys, a hair wash! Same method as before – obviously Konstantina’s method has spread. I feel so much better now that my hair is clean. She is going back home to Greece for a holiday on Friday and is so looking forward to it.
I realised that I was due to be sitting in Crown Court today (it’s ok – they had cancelled me). Magistrates regularly sit in Crown Court with a judge for two reasons. The first is when a sentence in mag court has been appealed. Judges don’t have the experience of lower court sentencing, and the way we use the sentencing guidelines to come to our sentence, so we give the background, and thoughts around the thinking and reasoning that the original bench would have used.
The second reason is where there is an offence that can be tried in either magistrates’ or Crown court and we have kept the case (either as a guilty plea or after a trial). After we have heard the facts in a guilty plea, or found guilty and feel that after all our sentencing powers aren’t sufficient, we can pass it up for sentencing.
I don’t know which today’s hearings would have been, but I am sorry to have missed it. Never mind.
I am now doing catch ups. I’ll email this and attempt to add the photo that Busi took of me and my machine.
Talk to you later.
Love
Me
Had a reasonable night’s sleep with only one blood test at 2am – not too bad.
Woke up at 5.30 and listened to Wake up to Money for a bit while dozing, then woke up properly at 6.30.
As it was quite dark, we had a light show when the staff were trying to get the right lights on. The light switches aren’t labelled so it’s pot luck as to which bed’s light goes on!
Realised it was St David’s Day and that as I was in here where there is a no flowers policy, I wouldn’t be getting my usual present of bunches of daffodils. This was lessened by the fact that Sian has posted me some virtual daffs on Facebook – thank you, Sian!
Tea man came with breakfast. He has been on duty for several days and now knows I have bran flakes and tea with no sugar for breakfast. I surprise him sometimes by having coffee (but he knows that I have sweetener with coffee). It just goes to show that everybody can make a contribution, and it makes a difference.
Mady, the day nurse today came this morning to check my medications and the timing of the PEX. PEX this afternoon, so meds ok. “You’ve got a lot of medications!” Damn right – I had 12 tablets of varying sizes, so had to do them in groups of 4. Unfortunately, the last lot didn’t go down so well, and I was left with a nasty taste in the mouth. A biscuit was tempting, but I resisted.
They are going to try to blitz the sugars today, so I had a dose of 20 units of insulin – the highest by far yet.
The NMO lady ( I must find out her name) came to have the chat and check how I was doing. I think I’m doing ok, as I am getting more movement and strength back a little bit. As she was here, Busi (the PEX nurse practitioner) arrived to set up. A bit of confusion, but it had been long enough since my meds, so all ok.
As I’d had a bit of a wobble with the blood pressure yesterday during the PEX (at one point it was in the 80s over 48), and because I had had a calcium shortage, Busi gave me some IV calcium. It was given manually IV and took 10 minutes – when they do it on the unit, they have a pump. I felt really sorry for her as she had to sit holding the syringe and pressing it all that time.
When they take the plasma with the antibodies out, they replace it with albumin. The fluid they use is called Alburex. Today I had 3 litres.
It worked well and was all over in 75 minutes. The NMO lady came back with the next two booklets – Living with NMO from Fatigue to Energy and Staying Active with NMO. I have read them (they aren’t very long) but thy have made me a bit despondent. The NMO lady will be having a chat with me, as will other people. I think I’m in for meeting a lot of people!
As it is St David’s Day, I am watching on I player The Taff – the River that made Wales. For those that haven’t seen it, it’s ( clue in title) the story of the Taff form the source in the Beacons to Cardiff. There is a lot about the fishing (the presenter is a fisherman), and the amazing recovery the river has made since being declared “dead” 40 years ago but also about the history. I’m halfway through episode 1 and in Merthyr at the moment.
Lunch was interesting – the bed stopped working, so I was half sat up. The table didn’t fit over my knees, so I had my plate under my chin. It was very funny!! I had orange juice, 5 bean salad and yoghurt.
I was very tired, so fell asleep while listening to the news. When I woke up, there was a note from Nina, the specialist NMO physio who had come to introduce herself. I won’t see her now, but she is in charge of my physio and will liaise with the rehab physios here and wherever I go afterwards.
Then I had the bed bath (bed started working again, so it was probably a loose connection – more automotive connections!) and - joy of joys, a hair wash! Same method as before – obviously Konstantina’s method has spread. I feel so much better now that my hair is clean. She is going back home to Greece for a holiday on Friday and is so looking forward to it.
I realised that I was due to be sitting in Crown Court today (it’s ok – they had cancelled me). Magistrates regularly sit in Crown Court with a judge for two reasons. The first is when a sentence in mag court has been appealed. Judges don’t have the experience of lower court sentencing, and the way we use the sentencing guidelines to come to our sentence, so we give the background, and thoughts around the thinking and reasoning that the original bench would have used.
The second reason is where there is an offence that can be tried in either magistrates’ or Crown court and we have kept the case (either as a guilty plea or after a trial). After we have heard the facts in a guilty plea, or found guilty and feel that after all our sentencing powers aren’t sufficient, we can pass it up for sentencing.
I don’t know which today’s hearings would have been, but I am sorry to have missed it. Never mind.
I am now doing catch ups. I’ll email this and attempt to add the photo that Busi took of me and my machine.
Talk to you later.
Love
Me
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| My homemade Daffodils for St David's Day! |
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| Me & my PEX Machine - although I don't look it, I'm feeling positive! |
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