Hope all went well with the baby sitting weekend, Katy. I laughed at your empty box!
Are you on half term now, Ali? I just realised, this morning, that itâs half term here next week. Thatâs the first time, in forever, that a school holiday has arrived unexpectedly⊠itâs only taken nearly 4 years of retirement! Put your feet up, linger a while on the CBA bench and thoroughly recharge those batteries - without any lurgs, hopefully.
And thank you both for your kind words about my venting.
OH emailed his PD nurse but got an out of office reply. He said she wonât be back until Monday 26th, if he read it/remembered correctly (thereâs a first time for everything? ) So thatâs 2 more weeks to wait. Ho hum. Heâs managing OK, mostly, but still not up to doing much. Some days are worse than others.
Iâve spent the weekend knitting a jacket and leggings for GDâs new doll and sewing a Spiderbear costume - from 2 charity shop t-shirts - for Loofy, as her birthday is next month. She also wants bigger Mini Mouse pjs as sheâs outgrown hers and she wants to continue to match Loofy in his. (Thank goodness he doesnât outgrow his!) The website I got them from only has them left in sizes 6 - 7 and 7 - 8. Oh no! Am I going to have to start again with another set? I emailed the company and, apparently, âmore stock will be arriving by the beginning of Marchâ. they arrive in time. I think I might just buy a set in each of the bigger sizes in case they stop making them: Birthday sorted for this and the next 2 years?!
mmm thatâs annoying, is there no one else that can issue new meds? Seems a long waitâŠglad he is doing ok difficult times.
You have been busy dollâs clothes and spiderbear costume woo hoo would have loved those when I was young, was very into dolls etc hahaha. Good idea about jammies hopefully she will still love them in the next 3 years haha.
Yes all went well with GC, we decorated biscuit lollies, painted watched funny videos where we all laughed and laughed, it was good fun. Went to bed early last night exhausted. Slept until 3 this morning read for a little while then fell asleep again so am well rested.
Finally made decision to purchase new curtains, have hated living room and kitchen ones for years and years. Every time I have been looking prices were mind boggling. Living room has big windows down to floor so was checking well known site and spotted thermal blackout curtains for a very good price, woo hoo, ordered Fri night and big pair came on Sat morning, kitchen ones arrive today. Big ones up!
Quiet today, itâs a lovely sunny day but the CBA bench is calling me xx
Goodness, goodness, did go out just for a short while, have been looking for a lamp to put on kitchen table, found one I liked a few days ago and went back to buy, it was gone arrrgh. So saw 2 today hummed and mmmmmâd for ages went down another aisle and found the perfect one, woo hoo brightens whole kitchen area without having to put on big light.
Also found some material for foot stools, I would like to re cover, last one I bought ended up not liking at all so didnât use.
Am going to need everyoneâs fingers and toes crossed for this to be successful hahaha. HelpâŠxx
Ooh! New curtains! How exciting! What colour are they? We have big windows - x2 - in our living room and, back in 2000 (yesterday? ), I spent an eye-watering amount - for us, anyway - on thick, velvet curtains. Had to get them from my catalogue so I could pay in installments! Remember that? Luckily, I still love them and they still look great when closed,although the sun has faded the dark blue to grey on the edges!!
OH has received a survey, through the post, to complete and take with him to his physio appointment next week (grrr, itâs Tuesday this time so Iâve had to rearrange my monthly lunch. Ah well, could have been worse. Could have been Sewing or Ambling which canât be changed.) The survey is about quality of life with PD. There are about 40 questions to respond to on a five point scale, from âall the timeâ to âneverâ based on the last 3 months. Oh good grief! There isnât a single question to which he could, honestly, tick âneverâ. (Whether he will be honest, though, is debatable ) Itâs really depressing but also somehow validating that yes, it is a sh** disease. Made me shed a tear just reading it and I donât have to fill it in!
We had sunshine today too. Still cold but so lovely to see a change from the constant damp and grey. Managed to dry the washing outside. Couldnât persuade OH to go anywhere so I just went for a swim.
Sorry, Ali, reading back, I realise I was a bit previous with my half term comments. It seems weâre earlier - for once! - round here than everywhere else. You can enjoy yours, next week, knowing others are back in school.
Norfolk (GD) are off next week, too, but I still wonât be able to visit. OH now saying PDN is back on 12th, not 26th⊠Thatâs today but I donât know if sheâs replied to his email yetâŠOr if heâs bothered to check!
Why the massive questionnaires?? arrrgh Can they not just ask??
Itâs hard to be completely honest because you really donât want to admit to yourself or others when things are really not that greatâŠeasier to not elaborate on paper. Any word about new meds?
Glad you managed your swim, where are you going this time?
Can imagine the expense JCJ, remember someone telling me their curtains were ÂŁ400 for a small window, shocking. Itâs a great buy if you still love them!
Curtains are natural in colour would say they are more biscuit coloured because didnât want light, light ones. Am feeling a little uncomfortable as they are still pretty creased, says to hang and the creases will fall out, mmmm not sure if I can wait that long but dont want to take them down and try to iron so maybe a hand held steamer?? Will see.
Have done it, both foot stools re covered woo hoo!!!
When I was taking off the original material saw that on the reverse material was bright orange, perfect. Just had to iron new crease and stud them, they are not perfect but am very, very pleased. Made a tablecloth from material purchased so no waste. Been a busy morning. And am not a crafty personâŠ
Out for breakfast tomorrow the one missed last week and am hoping to go along to EDâs later with birthday presents they will be a little early but GS is out on actual birthday and itâs a hit or a miss for GD as she is working after school, so hopefully will catch her tomorrow. Next birthday is July thank goodness, haha.
Was on a video call with YD and heard GS say âCan I have some milk please?â How fabulously wonderful was that?
Absolutely pouring with rain here, yuck xx
I think OH - and perhaps others too? - is more likely to answer honestly to a written questionnaire than in person. Heâs less likely to try to impress and or understate his problems. Just like he walks almost normally when Drs are watching; âbest behavior walkingâ his consultant calls it, and then reverts to the usual shambling shuffle straight after!! However, heâs only tackling a few questions at a time and some of those heâs ticked âneverâ, when Iâve actually seen him experience that issue in the last 3 months. More than once!!
Not heard from PDN, though there was a blocked call from âwithheldâ this afternoon, which could well have been her. Iâve turned off blocking in the hope sheâll ring again. Trying to persuade OH to look in his paperwork and find her number and ring her. Itâs tempting to just do it but I know that will annoy him⊠as it would me if roles were reversed!!
Swimming Flamborough Head to Spurn Point now. 50 miles. 80.5km. 9km already swum.
Can you boil a kettle and wave it at your curtains?
Hurrah for GSâs speech developing in leaps and bounds.
Heard on the news tonight that Colin Firthâs shirt, from THAT lake scene, is being auctioned. Itâs expected to fetch ÂŁthousands. It made me LOL and remember our Benchland antics. Iâm sure it would only be worth that much if it was still sopping wet. With him in it!!
Tree surgeons came today and pruned our fruit trees. At last. The bits I couldnât reach have been driving me nuts for months. Nay, years!! They were lucky because it was warm and dry this morning. Chucking it down again now though. He said theyâve been so busy clearing storm damaged trees in awful weather.
Nearly there, Ali. Have a good, restful week off with NO LURGS!
Think that itâs super hard to admit whatâs really happening hence the âneverâ moments. They will prob see through the answers especially with OH attending there.
Hopefully you have heard now??
50 miles? Thatâs pretty far be the channel next wearing that shirtâŠ
Hurrah for the tidy trees, perfect no rain while they were there. Been raining here forever today we have sunshine and am staying in, typical.
Had a very nice catch up yesterday with aunt and cousin, we loved our breakfast haha.
Had a couple of things to do in town afterwards heard my phone ping and there was a message saying that delivery from chariot company would arrive by afternoon. Was very excited then paused and thought they had better not be sending old one back??? Package arrived itâs a brand new one hurrah, very pleased. Stuff back in basket and other one in cupboard. Wonât have to worry because now have a spare.
Did go along to EDâs no GD but GS opened his gifts, he was very excited which was lovely to see. Arrived home later than planned so had a very easy dinner, nipped into shop and bought prawns on the way home.
Well couldnât do it âthe waiting gameâ for creases and wrinkles to fall out, hand held steamer zapped curtains this morning looks great, kitchen ones are fab, no creases, living room ones have a very small amount which I can live with haha, so itâs turned out a good buy. Tried a blouse as well and itâs good anything not to iron haha.
Am exhausted now, on the CBA bench for a long, long time in fact prob all day xx
Made it, itâs finally here, half term. Planning to sleep for the week! I am exhausted.
I think youâre right jcj that your OH is more likely to be more honest on paper. You donât consider the reaction of the reader.
Oh Katy how nice a brand new chariot, letâs hope this one is more reliable.
Well Iâm off to bed now, thatâs it
Whispering so I donât disturb Ali whose snoozing on the K bench.
Iâve already swum the channel - admittedly not in CFâs shirt!
Virtual swims - or rather, real swims in virtual places⊠or something - so far over the last 10+ years:
The Channel - 22 miles
Loch Ness - 24 miles
Loch Lomond - 24 miles
Round Guernsey - 30 miles
Round Jersey - 45 miles
River Anker - 31 miles
Lake Windermere - 11.2 miles
Around Isle of Wight - 56 miles
Yorkshire Coast Redcar to Flamborough Head - 62.2 miles
Wow! Shove up on the K bench, Ali, Iâm exhausted just reading that! But Iâm glad I kept a record because itâs good to feel the weekly swims have âachievedâ something, other than exercise, obviously, even if it is only pretend.
Spiderbear costume is finished. I hope Loofyâs head is the same size and shape as Ashyâs because the mask is TIGHT!!
Couldnât face eating my dinner tonight as my stomach is giving me jip. Probably shouldnât have had beans on toast for lunch after last nightâs chips.
Iâll curl my legs up to give you some room. I didnât sleep very well last night, I have a cpaps machine for sleep apnea and part of my face mask has split and is hissing. I got worried about going to sleep and stopping breathing, which is silly because I managed it before the machine, Iâve only had it for 6 months. Iâve got some tape now and that should fix it until I phone the breathing department (thatâs not right, canât think of itâs correct name, too tired) on Monday.
Spiderbearâs costume is great, I wish I could make things. Iâm sure your granddaughter will love it.
Howâs the new chariot Katy?
Iâm off to mend my mask and then hopefully to sleep
Hope you managed to fix your mask and get some decent sleep, Ali. I canât imagine what it must be like to have to wear one (the post-surgery oxygen mask freaked me out enough!) but i suppose itâs better than the fear of stopping breathing
Finally got through to PDN. She still hadnât replied to OHâs emails so i offered to ring her. Itâs an indication of his state that he said âWould you?â rather than being his usual stubborn, independent self (says she!! )
Left a message for her at the hospital switchboard and she rang within half an hour. Asked him a few qs and will speak to consultant about the new meds. Theyâll be in touch soon.
Just been down to the village to get some fruit & veg, while itâs not raining. Tried to go across the park. Nope! Footbridges across the river are IN the river! Again! The detour has worn me out!!
My K&N friend showed me a picture of a really cute jumper with a teddy pouch. I showed YD, thinking GD might like it and she suggested making it for Loofy as Looflet (tiny needle felted bear i made) would fit in it.
This is the result, modelled by Ashy. I made another tiny bear incase Looflet doesnât fit and for illustrative purposes.
Ali hopefully mask is not hissing and you have managed a temp fix. Hope you are also feeling rested and able to enjoy your time off.
New chariot fine, did recommend to another lady a while ago so have warned her to keep an eye on wheels. Like the spare one because it is very, very light so will prob swap around.
Wowee JCJ never realised you had âdoneâ so many swims, goodness so fit.
Good OH allowed you to make call fingers crossed itâs soon.
Aaah really cute jumper and baby loofy.
GDâs birthday today, woo hoo, canât believe she is now 17âŠ
43 mins dialling and redialling docâs this morning managed to obtain a phone appt, spoke to very nice doc who I now have an appointment in person with⊠double woo hoo!!!
He thought it ridiculous I have not been seen in person for a long time, so grateful, nothing serious but need a check.
Out with friends for lunch yesterday so we now know almost complete story of friends BC. Lump in other breast being treated with chemo tablets. Lump has almost flattened after 3 weeks tablet taking. Radio to collarbone they discovered bone mets. She will be checked next week to see whatâs what. She is looking good and feeling very positive. She was very forthcoming so thatâs great because she was so quiet before.
GS decided he was not going on school bus on Fri and yesterday, school said let him be on Fri, on Sunday evening Mum was telling him school tomorrow etc and he kept asking why? (Laughed when she sent me a video) Had a meltdown on bus Mon, contacted school and they asked if she could bring him in. He went in pretty happily so school contacted YD later and said on Tues they would deliver the other children to school, bus would come back for GS with teacher on board. He went on bus no bother this morning, they think it might be too noisy on bus for him even though he is wearing his ear defenders. Thinking how wonderful school is, makes my heart happy. Not sure if they will try this for a couple of days, will find out later.
No rain today!! xx
Hurrah for sympathetic Dr and an actual appointment. Hope everything is good.
Also, well done GSâs school and going the extra mile - literally! - to keep him happy. I hope a long term solution is found. A relief that itâs not school that is the problem?!
Physio appointment today (OH, not me). 1pm appointment. Arrived at 12:45 and Hallelujah! A choice of FOUR disabled spaces in the car park - and several others. A miracle! Must remember that, in future. Even for a 2pm appointment, even though the pay machines have finally been fixed: Iâd rather pay for an extra hour than have the stress! I had packed him a lunch but he was too wound up to eat it before. I had lunch in the PALS cafe, while I waited for him, and then we stopped in a cafe, on the way home for lunch/a Danish pastry for me (they warmed it up!! ) Amazing: thatâs the first time weâve had lunch - or even a cuppa - out in absolutely aaaages! His packed lunch is in the fridge for tomorrow.
While we were in the cafe, he got a call from PDN to say his meds have been agreed and weâll be contacted by the hospital when they are ready to collect from the pharmacy there. (Madness? I know consultant has to prescribe it but why canât they just send it, electronically, to our usual chemist? ) Still, itâs worth the trek, the parking hassle and the inevitable long wait in the hospital pharmacy if it gets our lives back a bit nearer to ânormalâ.
I was amazed that OH coped with the phone call, whilst eating, in a fairly crowded cafe, with music playing. I thought Iâd have to take over. Perhaps the physio exercises are helping? Or maybe heâs just relieved that the new meds are coming. he stays this much more positive
Iâm pleased that the new meds will be coming soon. Fingers crossed that they work.
Katy well done for getting a face to face appointment with a doctor. We have to ask for an appointment on line and then wait for a text or phone call. Then no guarantees you get to see a doctor.
What a lovely school to do all that for your GS. How reassuring for your daughter.
I got new bit for the face mask yesterday from the hospital. I had to chase around the hospital as the lung function clinic (thatâs what I couldnât remember!) had moved. Why didnât they tell me it had moved to the other side of the hospital? It became a farce when I reached the other side, first I went to the clinic on level 3 then was told it was left for me downstairs, I got back downstairs and they couldnât find it. So was sent back up again and a clerk came with me and found a physiologist who was holding it! Thank goodness! Whether it was the new mask or all that exercise but I slept soundly last night!
Woke up to more rain, why does it always rain in the school holidays? You can guarantee the weather will improve next week!
Aaaah thatâs great JCJ, is this hospital far away? Glad OH managed call too, he probably was just so happy that things were moving at last, hurrah.
Goodness what a carry on Ali, lost in the hospital arrgh!! You may have just had a good sleep because you knew machine was working again. Have a terrible sense of direction and wandered around hospital for ages, ended going upstairs in the consultants lift, so embarrassingâŠ
Think I have had 2 face to face appointments in the last 6 years, this one is a miracle because we have the same scenario here too haha.
Not heard from YD today so am assuming all went well.
Pouring down here, yuck xx
Itâs a good job your lung function is ok in the daytime Ali; having to schlep all around the hospital?!
Our hospital â for most things â is about 15 miles away; 30 to 40 minute drive. A bit of a pain but not the trek to the bigger hospital (rads/carpal tunnel diagnostic).
Weâve paid for the good day on Tuesday. Heâs been in right a*** yesterday and today. Not long now to the new meds
Rain again. Forecast to do so, heavily, all day but I just managed to get to the village and back without getting wet. Path across the park passable â with waterproof shoes for the large puddles â but wonât be in an hour or so because the river is about 2mm below the bridges and water continues to gush into it from upstream and the canal overflow!
My mission to the village was to collect a parcel. New bra from JL. All the reviews rave about how comfortable, yet supportive, it is. Hmmm. Weâll see. Not tried it yet: CBA to undress right now. It looks very small to me. Iâll let you know.
Deja vu, this morning. Looked out the kitchen window and the tree surgeonâs truck & shredder were parked across our drive again! Next-door had nabbed them, while they were here doing our trees, and got them to come and do the silver birch between our front gardens. Just cutting it back. Thank goodness. I that tree!
Bra update: Arrrghh! Such a performance to put it on and then it reminded me, horribly, of the awful boob tube thing I had to wear before, during and after WE, that was so tight I could barely breathe. It was such a relief when BCN told me to just take it off! Once on, this bra was a bit tight but not too bad. However, I donât want that memory every time I perform the gymnastics to put it on, so itâs going back and I wonât order the bigger size. Back to the hunt. Weâre all going on a bra hunt?
Weâre going to catch a good one, weâre not scared âŠâŠ. Sorry couldnât resist thatâs the early years thing in me but weâre frustrated from being unable to find a good one.
Hee hee like the âscarredâ best hahaha.
Yep just awful not having a comfortable braâŠthink itâs impossible.
A couple from M&S are better than the rest I have tried, maybe try them again?
Been to docs, have a skin condition that affects eyes so one eye has been jabby all week, the other super itchy. Blotchy face too arrgh, so itâs a flare up, gel for face, keep taking antibiotics see if there is a difference in 6 weeks if not dermatology. Eyes check with optician, went in yesterday said to try antihistamines appointment next week, am hoping itâs only on surface and not in eye itself. Can see blotches along eyelid, eye drops 4 times a day and heat thing as often as I can.
Back to same cream for hands, also now for eyebrow, lip, nose and arm for 2 weeks let everything calm down and then back to doc to check whatâs what.
Not had a flare up for 20 years so thatâs pretty good.
Busy morning, bed washing done, hoovered and super clean bathroom.
So back to my usual spot on the CBA bench, pecan doughnuts in shed xx
Put your feet up, linger a while on the CBA bench and thoroughly recharge those batteries - without any lurgs, hopefully.
(Thank goodness he doesnât outgrow his!) The website I got them from only has them left in sizes 6 - 7 and 7 - 8. Oh no! Am I going to have to start again with another set? 
I emailed the company and, apparently, âmore stock will be arriving by the beginning of Marchâ. 
) Itâs really depressing but also somehow validating that yes, it is a sh** disease. Made me shed a tear just reading it and I donât have to fill it in!
OH now saying PDN is back on 12th, not 26th⊠Thatâs today but I donât know if sheâs replied to his email yetâŠOr if heâs bothered to check! 
- so far over the last 10+ years:
)
) Amazing: thatâs the first time weâve had lunch - or even a cuppa - out in absolutely aaaages! His packed lunch is in the fridge for tomorrow. 
) Still, itâs worth the trek, the parking hassle and the inevitable long wait in the hospital pharmacy if it gets our lives back a bit nearer to ânormalâ.
that tree!
