So sorry you had to come home, jcj, I hope you’re both ok, what a disappointment for you. I hope it can be sorted out soon. X
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Thank you @nannabee and @Alicat
Things are still awful but I’ve been on the phone to PDN - awaiting a call back but it might not be for a day or 2 
Rang consultant secretary but consultant on annual leave until tomorrow (then it’s Easter!! 
). Spoke to another neurology secretary who agreed with me (although admitted she’s not qualified to advise) that increasing Ropinirole back to 4 - he seemed ok then ‐ could solve the problem; certainly unlikely to make it worse. She’s promised to try and get someone to contact us.
Phone blocker turned off so they can get through (even when they withhold number) Woe betide any cold callers who ring: they will get the full force of my wrath!!
Hopefully increasing meds will work. I’ll keep you posted. x
Sparrow hawk has just been sitting on our fence. Sent to cheer us up? 
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Biggest hugs flying your way, so sad for you both, fingers and toes crossed you will hear from someone soon xx
Whoop! PDN called. She thinks increasing Ropinirole back to 4 will help but wants to ask consultant when she gets back from holiday, tomorrow. Quite frankly, things are hideous so I’m going to start tonight. Cross fingers everyone.
Update:
What a transformation!! After just one night back on 4 of the magic tabs, he’s back to how he was before we started the meds change. Possibly better.
Waited all morning for PDN to call and it was a huge relief that consultant was happy to increase R. Phew! I didn’t have to admit we’d gone ahead and done it anyway!!
If only we’d got to this point BEFORE we went away, the holiday wouldn’t have been such a disaster. Now thinking perhaps we don’t need to cancel the summer trip. Amused by the idea that we could use the lakeside log cabin as a sort of luxury beach hut: make use of the peaceful location, somewhere new, with facilities, but come home at night if necessary. It’s only half an hour away.
Yesterday, I was considering telling the girls not to come: too stressful for everyone and I wouldn’t want GD to see her Grandad in that state. Today, it looks like it’ll be OK.
Absolutely definitely not meeting up with BILs though: that’s a whole continent too far, never mind a bridge, after the week we’ve just had!!
Chicken, chorizo and sweetcorn in a mushroom and cream sauce for celebration dinner with mash, carrots and broccoli. You’re welcome.
The above chicken dish, after OH wanted to know what it was called, was named “Thighs of Relief”. You can guess what part of the chicken was used. 
OH my goodness! What a difference a day makes. Yesterday was awful. I woke up all hopeful and BAM! straight back to the shaking, panicking wreck who couldn’t even pull his own trousers up. Virtually all day. So distressing especially after we thought those days were over. For now.
It made me go online and apply for a carers assessment, though; had to do something proactive. Need to start the ball in motion as I definitely can’t cope all by myself if/when things get permanently that difficult!
Today, I woke up full of dread. He called me immediately and I thought, “here we go again 
” but he recovered very quickly. A friend of his came and took him out for a couple of hours this afternoon. Bliss! It’s been a very long time since he’s been out and I’ve not had to take him or fetch him back. I sat in the sunny garden with a mugatea, my Kindle (other…) and my knitting, relaxing, enjoying the birds twittering away and the bees buzzing around the flowers. I feel like I got back some of my missing holiday. 
We’ll probably pay with another bad day tomorrow because he will be overtired: we suspect yesterday was because he did too much - because he could, at last, the day before.
YD messaged me this morning. They have booked a hotel, half an hour from us, so they will definitely come and see us but we won’t have the upheaval or reorganising the house for them and they can leave if it is all too much for anyone. Hurrah!
It was light enough for a quick walk, up the lane, after dinner, last night and the clocks go on tonight so even more daylight. Things are definitely looking up. 
Good to hear that OH recovered quite quickly and he was well enough to go out and you could get some time to yourself. How lovely to hear that your family are visiting,
We’re going to visit both mums tomorrow, they get on really well together and in the past they often met up for coffee and went to the theatre together. They are now 91 and 87 respectively and are doing very well, both living independently. My mum was diagnosed with breast cancer 3 years after me and recovered so much quicker than I did. She’s amazing.
Have a great time with your family this weekend x
Woo hoo for having a good day JCJ and some much needed time to yourself.
It will just be one day at a time for the moment, glad you are being proactive. Perhaps your Tues appointment can suggest more places you can contact.
Enjoy your Mum visits Ali, fab your Mum coped so well.
Hopefully the weather will be good.
Had blood tests, went up in taxi and returned by bus (stop was right outside), standing there it started to pour with rain arrgh. Bus came in around 5 mins was so glad. The only issue was that it took around half an hour??? will not do that again in a hurry, haha. There was a rumour saying that place may close and move to a much nearer clinic, hope so as it’s only 5 mins away.
Quiet day, so quiet I fell asleep, such bad behaviour…xx
I hope you are making the most of your time away from school, Ali, and that you had a good visit with the Mums. Hope your YD/GS visit is going well too, Katy. When do you go home?
Things here are gradually improving, although we both need to recover from the trauma of the last 3 months - especially the last 10 days!
PDN rang for the prearranged phone appointment, this morning. I missed my U3a amble because I needed to be here. He actually handled the call OK -(wouldn’t have even been able to pick up the phone this time last week!) I had given him a pep talk beforehand; telling him not to play down how bad last week was. I had also secretly emailed PDN, over the weekend, about my concerns that dementia might be an issue. She didn’t refer to it but asked some pertinent questions and will arrange a visit to our house, in the next couple of months, for a face to face “to see how you are getting on”. Wonderful.
Also wonderful is that the carers assessment people rang me, almost immediately after PDN’s call. I was expecting to wait much longer than that: I only referred myself on Friday and it’s been Easter!! They are sending info in the post and someone from Crest, a carers charity will be in touch soon too. And to think, this time last week, I was boiling with rage and frustration and frightened for the future. (OH now noisily eating an apple 3 feet away from me and the rage… and fear for his future… is returning… 
)
He is still too wobbly, both physically and mentally, to want to go out so I’ve made up for missing my amble by taking a picnic up the canal tow path to a local country park. Missed the human contact but at least it was some time to myself, being active amongst nature.
Now thinking we probably could have accommodated the girls next weekend, but the hotel is booked now and it’s perhaps a good thing they have a bolthole - and OH still has his escape to the front bedroom where all his c**p, sorry, “artwork”, is all over the bed! I’m looking forward to seeing them. It seems aaaages since Christmas.
Apparently, DIL overheard GD explaining to her best friend, the other day, what a Welsh cake was followed by “We have them at Nana’s house”. I’m going to make some for her to take home to share with him… If the bigger girls don’t eat them all first! 
Good to hear that things are improving and you were able to get out, being outside always makes things seem better.
Mums are both well and pleased to see our son, he doesn’t often get a chance to see them. I am enjoying the break and chance to catch up on health appointments. Got my eye test today. I do wish the weather was better though! What usually happens is that it improves when we go back to school. 
Katy I hope you’re enjoying your time with your family.
Sounding very good JCJ fingers crossed things do continue to improve. Carer place? goodness how fast the contact especially around Easter. A little time to yourself is much needed. Think it was right idea for girls to be at hotel, you had no idea what was what at the time and keeps things fine at home less stressing.
Glad you had a lovely time with mums and they did see GS. Hope eye test goes well, let us know.
Yes am having a lovely time, it’s been pouring non stop unfortunately , am nipping up to shops later to buy some tasty things, yum. Will be soaked so am putting off.
Still being squished and squashed by GS and his tickles are horrendous haha.
Had a call from doc last night blood test has come back low so have to stop one of my blood pressure tabs to see if it’s that and go back for blood tests next week. Arrrgh so CBA’d with it all.
Am having GC for a sleepover that day so it’s annoying having to travel up to that distant place haha x
Forgot am home Monday evening and no doubt will be making detour to chippie x
You know that toddler thing: when they’ve been ill and they suddenly bounce back? OH is bouncing about like a puppy. But. I. Am. So. Very. Tired. Going down with some lurg? Just the reaction to the last few weeks? 
Good to see him better. But I bet he’ll overdo it and be a useless wreck tomorrow. Instead of going to the library! 
Could be a reaction to the last few weeks it must be very stressful for you. Fingers crossed that he is still bouncing today 
You need to look after you 
Eyes haven’t changed from last year thank goodness. No need to buy new glasses. White spots on back of eyes haven’t gone away but are no worse. The optician thinks they are a result of tamoxifen, I’ve not heard of that side affect before. He hoped they would disappear when I stopped taking it, but that was 2 years ago. It doesn’t cause any problems but he always mentions it.
Oh no Katy not more blood tests, you must feel like a pin cushion! X
He stopped bouncing. Insisted on coming to T***** with me for a quick food shop, on Wednesday afternoon, but disappeared back to sit in the car after 5 minutes because his legs hurt. He didn’t go to the library on Thursday. I was looking forward to that time here on my own. 
The girls have been here, this afternoon. Slightly annoying timing because I had to miss K&N, when it already feels like I’ve not been anywhere or spoken to anyone (in the flesh, at least) in weeks. It’s been so lovely to see them, though, so the knitters can wait . We had an early chippy tea and they’ve just left for their hotel. We’ll see them again in the morning. After their swim! They invited me to join them but it’s at least 1/2 hour drive away for a 9am session and mornings are tricky: some days he needs more help than others so I can’t commit to going anywhere that early.
It felt wrong seeing them off to a hotel for the night - even though that is how we always visited them. But, I think we’re all glad of the break… and GD is excited about her first hotel sleep! 
Loofy and GD arrived here in their matching SpiderBear/Girl costumes.
My optician regularly mentions damage to the back of my eye (once even terrified me by insisting I go straight to the eye hospital if any of a list of symptoms occurred! ) and the possible beginning of cataracts. She was seeing me every year but last time, after I stopped taking Tamoxifen and there was no further damage/deterioration, she said I can go back to 2-yearly. Hopefully your situation will be similar. 
Chicken dinner tomorrow, instead of Sunday - just to confuse everyone - as it’s something the girls all like and simple to organise. Don’t know about pud: may not bother because it’s a bit of a minefield with a 5 year old when they want to leave here at 6pm, at the latest, to get back to the hotel for bedtime.
Talking of bedtime… snzzzzzzzz
OH no! More bloods in the middle of nowhere, Katy! I hope a simple meds adjustment sorts the problem. (Rocks to and fro, manically, in the corner at the mention of meds adjustment! )
Hope OH is still bouncing haha very different from last week. It’s lovely seeing your girls and prob easier all round with hotel. Not the best an early morning swim when you are tired…keeping fingers crossed you can have some quiet time next week.
Good news Ali regarding eyes have not heard of that before, did remember JCJ and her issues. Do have a cataract but optition says it’s not to do with ta"poxy"fen.
Glad there has been no change in white spots, must Google haha.
Well here YD has another infection (wisdom) dentist says he’s happy to give her antibiotics until after all the weddings etc then he has a plan woo hoo. GS also has an infection arrgh he’s quite happy though thank goodness. Doctor said to YD he would hand prescription into chemist, was like wow what a service!! Went into chemist today and no he didn’t…very bad behaviour.
Was feeling a little jittery yesterday but am good today, hurrah.
Weather is horrific gale force winds supposedly until late this evening brrr xx
Can’t Drs send prescription electronically to Chemist? Ours does.
Windy here too today but it’s been sunny and much warmer. GD has been showing me cartwheels and handstands - almost - on our back lawn.
They’re back at the hotel now. GD is fast asleep while YD, DIL and I have been chatting in our WhatsApp group in their bedroom, the hotel bar and my sunlounge respectively. The wonders of technology?
They’ve decided to head straight home tomorrow instead of coming here first. 
It makes sense because they have a long journey and it’s half an hour shorter from the hotel. It’s been lovely to see them and OH has coped OK. Just. He had a panic last night, after they left because “They don’t usually do that” er… No. They don’t! and he’d fallen asleep upstairs so I went downstairs to watch TV, instead of watching in my room, next to his, so I didn’t disturb him. When he woke up and called me and I didn’t instantly appear - and he, of course, didn’t hear my: “Coming!” - he thought I’d abandoned him too. By the time I’d disentangled myself from my knitting (in 4 colours so 4 balls of wool!!) and dashed upstairs, he was in a proper panic.
YD, GD and I went down to the playground, this afto, leaving DIL and OH at the house. As we were walking back, we saw a strange car pull up onto our drive, behind both our cars???! OH got out!! What?! He’d been for his little walk and his tablet was due so he just froze/panicked. A neighbour from up the street had driven him back. Going to have to have words about not setting off for his 100 yard shuffle when his meds are wearing off/due!! DIL was mortified because she thought she should have insisted on going with him.
We’ve had the roast dinner today so I shall be so discombobulated tomorrow. I suspect dinner will involve the rest of the chicken. Don’t know what else I shall do with myself. I’ll struggle to remember it’s even Sunday!! Not just OH who’s confused?
Were you cartwheeling too?? hahaha
Lovely you were with girls even though for a shorter time, just nice to see them again. OH is on the bad behaviour bench, special one on the outskirts of Benchland…
Arrived home last night, all went well with journey whew! Felt sad leaving as GS is so very affectionate, was kissed, cuddled, squished and squashed the whole time I was there, hahaha.
Woke up yesterday morning and had a huge issue my back arrrgh pretty ouchy, thought am never going to manage home…kept moving around YD’s and swallowed painkillers, you forget how painful it is. Didn’t sleep well last night was still awake at 4 am arrgh. Less painful today thank goodness just little niggles. ED wanted me to cancel the sleepover but should manage. Have the blood tests tomorrow morning, will see how I get on.
Bed early tonight will be sooooooooooo mad if I can’t sleep tonight grrrr xx
I hope you slept well, Katy, and your back is better. Fingers crossed bloods can be sorted simply.
I wasn’t cartwheeling, no. My, not inconsiderable, behind was firmly planted on a garden chair. Although, of course, I was executing perfect cartwheels, handstands, headstands, back flips and all manner of Olympic gold standard gymnastics in my head! 
I. Am. So. Sick. Of. This. Weather. Will we ever have more than one day without rain?! I nearly mowed the “lawns”, on Monday, as they were only slightly damp after all the wind, but decided to let them dry a bit more. And besides, I was determined to go swimming, for the first time in 3 weeks, and then recover on the K bench afterwards! Of course, it has rained ever since! 
Currently waiting for the dentist to open, after lunch, because I’ve been trying to get through to them all morning to book an appointment because a large chunk broke off my back molar this morning; thought it was a particularly tough nut in my muesli! It’s not painful but I need to get it seen to before it disintegrates further.
OH very up and down. He’s working himself up about the library tomorrow. I think he’s decided to stop going. Noooooo! That’s the only place he gets to speak to anyone other than me and the only time I get the house to myself. His anxiety is all over the place at the moment but at least the panic attacks have eased. (Really shouldn’t have tempted fate there?!)
I’m so bored I even cleaned the ovens this morning! Only a week late: I promised myself, when we had the new kitchen, that I’d do them every school holiday. Getting a bit lax in my retirement though.
Right. Gone 2pm. Time to tackle the dentist again. Wish me luck!
Hope you managed to get appointment with dentist arrgh at least you didn’t swallow it haha.
Blood tests are normal so looks like it was blood pressure tablet which could be reason for fainting and feeling dizzy all the time???
Blood pressure checks in 3 weeks time.
GC are here they were on the naughty bench last night 11.45 pm they were still awake WHAT??? So had to go through and read the riot act haha asleep in 10 mins.
Knew you would be cartwheeling all around your gymnastics skills are amazing!!
Rain rain and more rain so bored with it all xx