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The Goose and Carrot Pub Thread

913 replies

roaringdragon · 30/08/2026 15:27

Everyone is welcome, and the thread disappears after 90 days.

Thank you for the last thread @lougle. I hope the doctor was helpful and DD2 isn’t feeling too rubbish this morning.

DS1 has used the last of his EOTAS hours today. There will be at least a few weeks before the EHCP is finalised and funding restarts. He will hopefully have his operation during that time, but it is still going to feel like a long time without that provision.

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PurringTiger · Today 17:59

Oh that is so helpful! Thank you. Sorry DS1 is not good today, yes the light is tricky here too. It’s freezing here hope you get tucked up in bed with tea, cake and book asap.

roaringdragon · Today 17:55

Apologies in advance for the long post.

So on a normal day there is:
11am - dose
12pm
1pm
2pm
3pm
4pm
5pm
6pm
7pm
8pm
9pm
10pm
11pm
12am
1am
2am
3am
4am
5am
6am
7am
8am
9am
10am
11am - dose

If you start at the first 11am and count on to the second 11am you can see 24hrs between doses.

When the clocks go back it looks like:
11am - dose
12pm
1pm
2pm
3pm
4pm
5pm
6pm
7pm
8pm
9pm
10pm
11pm
12am
1am
2am/back to 1am
2am
3am
4am
5am
6am
7am
8am
9am
10am
11am - dose

If you count on it shows 25hrs between doses, so to make it 24hrs you would need to take at 10am.

The clocks changing throws DS1. Not the time but the changes in light/darkness etc. He isn’t too well today. He has spent a lot of the day asleep.

We have carers tonight, so the extra hour will hopefully be spent in bed.

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PurringTiger · Today 17:50

@roaringdragon thank you for putting it simply. Neither of us are adamant as both muddled and trust each other so now don’t believe our own selves. How is DS1 with the change? On the upside me and you get an extra hour.

roaringdragon · Today 17:45

10am.

Because the clocks go back.

It would be 12pm if the clocks went forward, but that is in the spring, not autumn.

If DH doesn’t believe you, you could show DH by writing out the hours then counting them.

I am really tired today.

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PurringTiger · Today 17:41

we couldn’t get any more confused here than we are already 😆.

So to correct the hour tomorrow should we give at 10am or 12 noon? I think 10 DH thinks 12, DD is just worrying, as well, it’s the clocks changing full stop.

roaringdragon · Today 17:38

Yes, if you give it at the same time tomorrow there will be an extra hour between doses compared to a normal day.

Sorry I have really confused things. I shouldn’t multitask. When I said we give a top up dose when the clocks go forward, I mean we do that when necessary when the clocks go back. It isn’t necessary when the clocks go forward as there isn’t an extra hour between doses.

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PurringTiger · Today 17:35

So if I give at clock 11 tomorrow it will be 1 hour later than usual?

roaringdragon · Today 17:32

PurringTiger · Today 17:30

Ah so 11 becomes clock 12 tomorrow? I thought 11 became clock 10.

Sorry, no, clocks go back tonight. I was just mentioning what we sometimes do when the clocks go forward.

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PurringTiger · Today 17:30

Ah so 11 becomes clock 12 tomorrow? I thought 11 became clock 10.

roaringdragon · Today 17:22

@PurringTiger most of DSs’ medication is just certain times of day e.g. morning, lunch, afternoon, night, with food rather than set times, but DS1 has some, such as some of his medications for his dystonia, that are at set times. We keep to the clock time and clock changes don’t alter that. When clocks go forward if e.g. his dystonia is bad we sometimes add a small top up rescue dose, but we sometimes add rescue medication even without clocks changing.

@Lougle I hope your drive to London and back wasn’t horrendous.

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Lougle · Today 17:11

Can you say what medication it is? The approach I would take would differ depending on whether it's timed because having too much in a 24 hour period is bad, or whether it needs to be given at timed intervals to prevent symptoms, etc.

E.g. paracetamol has a max dose of 4g/24 hours (assuming an adult over 50kg), so I'd delay the 11am dose until the clock said 12pm if taking it would go over 4g in the previous 24 hours.

If it's a drug that has a long half-life, so most antidepressants, then 1 hour won't make much difference, so I'd stick to the clock time.

PurringTiger · Today 17:00

@LathkillDale thank you. It’s the wobble I’m not sure if we should try and avoid but it will mess up other routine if we change it.

DH has mentioned it to DD and now she is worried. DH and I disagree on what time an 11am pill should be taken after the clocks go back. I don’t want to influence your answers but what does the pub think?

LathkillDale · Today 16:41

PurringTiger · Today 16:35

Does anyone else have timed medication? If it’s taken at 11am what time should it be taken once the clocks go back? And do you bother as it’s only an hour and just wing it?

Yes, we do just give the meds as per the clock, but we still expect a few wobbly days with DD1!

PurringTiger · Today 16:35

Does anyone else have timed medication? If it’s taken at 11am what time should it be taken once the clocks go back? And do you bother as it’s only an hour and just wing it?

PurringTiger · Today 01:33

@Zzzzzs a smorgasbord of surprise!

Lougle · Yesterday 23:06

@drspouse glad DS is coming home.

@Zzzzzs I'm not sure whether I'm going for the chicken, the mushroom, or the mustardy sauce as the biggest whoop, so have three from me - whoop whoop whoop!

DDs and I visited our old homestart volunteer/friend who moved 30 miles away today. Our return journey involved several blocked roads due to fallen trees, plus roads with lots of opposing traffic that was rerouting to avoid blocked roads. Our 40 minutes journey took 1 hour 18 minutes. The last fallen tree was just a mile from home, so it was quite frustrating to have to drive 5 miles to reroute.

We got home and I looked out of the window to see that the gazebo that was covering all of our outhouse belongings (still in the garden because we're waiting for a certificate to be issued so the contractors can finish the cavity wall insulation, which apparently can't be done until the council have dug us an aco drain) was lurching at a very unnatural angle. It turns out that strength of the wind had been no match for the sandbags weighing the gazebo down, so it simply snapped the metal struts that stabilised it, so that the frame bent to one side. So we spent 30 wet and windy minutes extricating the cover from the frame and using the cover as a tarp.

I'm meant to be taking DMIL to the train station tomorrow, but suspect that the train will be cancelled. So we're going to drive her to London, drop her off, have a cuppa with BIL & SIL, then drive home.

Violasilkie · Yesterday 19:54

Glad DS is home @drspouse

Phoned council re council tax online form and lady kept asking which form but there are only two but she seemed to say that we need to do their online form via post. 🤔So she is posting the same form out. It also says a months delay.

Cleaned all the grout and tiles in DSs bathroom and washed the doormat, did floors, tidied up DSs bathroom cupboard, we started getting old paint off the area we need to tile. Its slow but working. Managed to get hold of plumber and he says he will quote at weekend and can do next week. DS gave us access all day today though it was DH that was hard to get involved. Collected Sainsburys order and some smaller shelf brackets.

roaringdragon · Yesterday 16:42

@drspouse I’m glad DS is home.

@Zzzzzs now you are just showing off! Grin I love reading about your food wins really.

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Zzzzzs · Yesterday 16:20

I’m just going to say…..chicken fricassee with three chunks of chicken a mushroom(!!!) and creamy mustardy sauce.

<swaggers around looking nonchalant>

drspouse · Yesterday 13:43

We have a little camera in DS room as it's the other end of the corridor.
He's had another dose of antibiotics and they are on their way home. I left my knitting by his bed so I hope they spotted it.

roaringdragon · Yesterday 12:38

@drspouse I hope DS can be discharged today.

DS1 doesn’t have epilepsy but we have cameras with audio and video in DS1’s bedroom including one looking down on his bed. Although on the nights we don’t have carers one of us spends most of the night in his bedroom anyway. We also have an obs monitor we sometimes use when DS1 is unwell.

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Violasilkie · Yesterday 11:52

Glad your DS is doing fine now @drspouse

Just had a UC review notification over email and seemed to be to coincide with PIP review as date was one day different. Done now, it was just to go through if anything had changed.

Great news about ADP @NoHaudinMaWheest

Still no quote or date from plumber who says we need him before electrician but we will call to chase today and also need to do a bit more preparation work on the walls ourselves if DS is giving access. Just getting Sainsburys orders and picking up some more shelf brackets. Waterbutt arriving tomorrow.

We haven't really got things in for the prepping though always have meds and blankets etc available and neighbours are like the Famous Five grown up. Trouble is with the food DS will eat it all if its things he likes and I prefer to have him eating fresh fruit and veg rather than just cereals, crisps and biscuits. We also don't have a massive amount of storage space though I guess UHT milk I could keep in upstairs fridge which we only use when DD is back from university. We found we could always get things in covid even if it was a lucky / unlucky supermarket what's left it was still better than tins.

Zzzzzs · Yesterday 11:43

We sleep very nearby so I can hear ds move. I worry that I sleep too deeply now as I’m so very tired. Ds is looking a bit fragile today and the wind is howling. We are carrying on with his normal schedule though as Fridays are busy days.

LathkillDale · Yesterday 10:44

@Zzzzzs It is Maxwell-Muir. Young Epilepsy didn’t use mattress monitors, as they said they had mixed results with them - they could be set off by normal movements in bed! That put me off mattress monitors.

@drspouse It sounds to me like DS was in a deep sleep or was unconscious after a big seizure?

Where DD1 is now, she has audio, video and mattress monitors at night and two awake night staff for five residents; plus they have an onsite nurse with oxygen, a defibrillator, etc. We only use audio at home. We can’t be up all night, watching a video monitor! If she’s had a lot of seizures in the daytime and we are worried about her, I sleep with her. IIRC, her consultant said the presence of another person is one of the best protections, against SUDEP!

I have considered one of those monitors like a watch, but DD1 has a phobia about jewellery; and I can well imagine her flatly refusing to wear it!

Zzzzzs · Yesterday 09:23

@drspouse if it’s not bacterial what do they think made him unresponsive? Surely they are concerned it was seizure related? There is a (very expensive) bed monitor you can get and you can get funding through a charity (off the top of my head maxwell-muir but I’d have to do a deep sleuth to find the proper name and I’m out) the consultant refers you and there’s a waiting list. IMO a ridiculous way to provide life preserving equipment but much of the NHS is a bit baffling.

I’m feeling very different from those around me. Many of my peers are sad their children have moved on to the next stage or retiring and we are still as tied as we were with very young children. I actually love our life but it’s very very different than people imagine and I imagined it would be.