What a week! Had to take the day off work, on Tuesday, because OH was in a shaky panicky mess again. He was suddenly, miraculously, much better when it got too late for me to go to work! Grrrrr! He is definitely obsessed with the idea that I should give up work and be here for him all the time - I'm fighting hard against that! I NEED that contact with the outside world - and has decided he's afraid to be alone at home (though that didnt seem to be a problem on Wednesday afternoon when I took two of the volunteers to harvest some of the allotment stuff, trying to give him one less thing to stress about!)
On Wednesday, just before the end of the morning, I checked my phone and there was a missed call from home number over an hour before. And a voicemail message. Listened to the message and it was just a high pitched garbled voice. Tried to ring home number and OH's mobile. No answer on either. Spoke to headteacher, who is being very understanding - at the moment, at least - and dashed out of school and forced myself to drive safely home. Got in house. 3 radios and the TV on but couldn't find OH in any room and no answer when I called. Couldn't see him out of the windows anywhere. Started to feel really guilty for standing firm and speaking to him rather sharply when he was begging me not to go ot work that morning. Imagined all sorts of horrific scenarios. Heard a sound I recognised. Looked out of window into back garden and saw him cutting the hedge. He was fine. He'd rung me because he got upset when someone was nice to him on the phone and had rung off without leaving a message: the noise I heard must have been a combination of the TV in the living room and the radio in the kitchen!! Took me a good while to calm down!
Yesterday, he had his 2nd session with the CBT therapist, (so I was late into work) which stressed him out and today we've been to see the (non PD) consultant, (another day off work!) so last night he was awake and panicky in the night and up before 6 - getting me up as well, and I'd barely slept
Wish we had cancelled this appointment as it has just left us confused (and exhausted after no sleep!) consultant disagreed with GP about best antid's to take. OH very unhappy with the suggestion to reduce the one he's on (and psychologically attached to) and take something else. Wouldn't prescribe any new PD meds because we're seeing the neurologist next month. Watse of time. However, he did tell us that we should still get an appointment through for the orthopaedic consultant but that the knee xray was normal. Oh. Guess there's nothing to fix there then. Also, he's going to refer us to swallowing clinic because OH is still not chewing his food when he's stressed.
I'm starting to question my determination to keep working mornings until July.: love my job, enjoy seeing the kids and colleagues and need the break from the tedium at home, but I do wonder if life might be easier if I just handed my notice in. But the thought makes me want to cry and then he will have "won"..... and we'll just move onto the next battle?
Anyway rambled on too long. Hope all Benchlanders are OK.
Two really good days this week. Much more settled. OH seemed to have adapted to me being back at work. He's been calmer and less shaky. Even started getting taxis and doing the things he used to do, before the summer holiday. Hurrah! Methinks, the meds are working. However, just got back from swimming and he's in a right state again: building up to yet another s****y weekend? Every time I dare to look forward and make tentative plans. Every time. I'm NOT going to stop going swimming, but this is the third week in a row my going has "made him ill". Grrrrr.
Prob best if he attends both, first one may be able to give advice on what to do? and where to go for a more structured day. No harm, know it will prob be difficult even getting there. Hopefully he will be truthful about what is happening (you always try to make things sound better than they actually are) if not you will have to step in. It is affecting you both.
Can you phone consultant? Even if you can pass on a message from secretary so consultant is fully informed for the appt which means he will be able to ask your OH pertinent questions.
Glad you are happy going to work, gives you time to be yourself again.
Your poor girls..........GD is usually fine but last week.........ED is also coping with limited sleep.
Hours have kinda been sorted for YD so more positive news there.
It's pouring with rain here, yuck, have to go out but can hang off, hopefully weather will calm down.
Think it's def hayfever, have no carpets only rugs and have had sofas for around 18 months now. When I go outside in the morning am choked up after a few minutes and it looks as though I have been crying for hours.............am not going to go through this next year, will try everything, haha. xx
Oooh! There's someone in BENCHLAND! Yay! It's been eerily deserted. I was starting to wonder if the alligators had eaten everyone!
Just a thought, Katy, have you had new carpets or upholstered furniture recently? I had a colleague once who suddenly developed ""hay fever" which lasted all year. Eventually, they discovered it was the chemicals in her new carpet: the glue?
It's good to be back at work. I have enjoyed working with the kids, getting out of the house and seeing other people, but it's very stressful because OH has made it very clear that he really doesn't want me to go. Major panic attacks all the week before I went back. However, I've made it very clear that I NEED to go to work as I will go insane if I have to be here 24/7 with him.
He manages OK while I'm away, but I feel guilty and worry about him, so it's not the complete escape I need. I think we're going to have to investigate the possibility of carers coming in, or a befriending service - although as there are SO many people who actually live alone, he would hardly be a priority as I'm here every afternoon!! He's up and down; for brief spells he seems like his old self. Sometimes he seems to have trouble eating: he puts food in his mouth then seems to forget to chew or swallow it and will shove some more in - like a flipping hamster! Dementia? PD swallowing issues? Other times he eats normally, although VERY slowly. Perhaps it's just the depression, which has similar symptoms to dementia, according to my research. Will have to ask the neurologist when we see her in October. He's driving me nuts with the "I'm not well" card every time there's something he doesn't want to do... or hear!! Grrrr! Still undecided about whether to cancel the consultant appointment on 20th Sept as it will be with a non - specialist geriatric consultant, and we have the Oct appointment with a neurological consultant, but he's been so ill that I don't want to leave it until October; we might be able to get the next PD meds which may help. Or not. Who knows?
GD is doing the same as yours, KTC, and waking up several times a night. The girls are run ragged but there's nothing I can do to help from here.
No I think it's great to be excited haha!!
Hope you are doing well back at work.................
And OH is ok.................
Am on the "fed up" bench, seem to be going round and round in circles and never obviously getting to the end!!
The hayfever is driving me crazy, who would have thought?? it's soooooooooooooo annoying, first year in my life that I want summer/autumn to end.
Mum was not the best ever when I was up, a little confused after weeks of being super good, ah well.
YD's hour change is now not acceptable, WHAT?? So will need to see how that goes...............grrr.
Did a small bit of babysitting for ED, both grandaughters, youngest is def hard work, had to go to bed at 8.30 to recover, haha. She is up every 4 hours at night and very rarely sleeps during the day, regression they call it now..........
On a happier note am thinking of buying a bureau and new bookcase, problem is delivery, I can't at the moment be home for the dates they are offering, grrrrrrrrrrrr! Have wanted a writing bureau for years and years
Think I should be on the "moany, whiny" bench now!! xx
Are you going to be babysitting both the smallest GC, KTC? Every day?? Crazy indeed.
We're having good days and bad ones. Just when I think the meds are doing their thing he reverts back to stressing and shaking. It's worse when he's hungry - and the constant shaking is burning calories all the time - so I'm having to make sure meals are ready earlier than before. I can't plan to do anything because I just don't know how he'll be. Today, I wanted to get the supermarket shop done because it's usually quiet on a Bank Holiday Monday, and I needed to go SOMEWHERE as we've not been away from the house and garden all weekend. OH said he'd come with me. We got in the car. It was hot, obviously, because it had been sat in the sun. We hadn't gone 50 yards before he announced that he couldn't do it so I had to drive around the block and take him home. Grrr. On the plus side, I still went and I enjoyed the relative freedom - even if it was only shopping! I didn't rush.
Tomorrow, he has a telephone assessment with a mental health therapist, so we'll see what she/he says. On Wednesday, I'm meeting a friend for a cuppa and a catch up. He can come into town with me and go to the library, or he can fester at home but I'm definitely going! Back to work next week so he's going to have to get used to me not being here. I'm actually looking forward to going back to work. It's been many, many years since I've been at home for so much of the summer holiday, with no YD camping or MMU.
Exciting news: last night, while I was sat. in the garden enjoying the cooler air, 2 juvenile hedgehogs came to see me! We've been providing dried mealworms and water to an adult hedgehog for a few weeks now, but these were definitely smaller. So our garden is home to at least 3 hedgehogs! It is ridiculous how happy that has made me!
Not too bad weekend, crazy, crazy starts tonight.
YD and GS expected shortly, she starts work tomorrow, just a refresh. Doesn't really sound like a refresh as she will be working almost the same as she used to haha.
ED is going back with her on Fri then I am going to stay for a few days.
It's hot here have been trying to avoid the sunshine, which is sad..............
Have been looking for a double buggy as will def need one or I will be stuck at home, don't need till Oct so have plenty of time to search around.
Am still being plagued with hay fever, most days am frightened to look in the mirror, scary stuff indeed.........xx
Happy YD made you smile, makes all the difference.
Great that your son is doing well, and also cheering you up.
Fingers crossed tablets will do the trick and there is nothing else.
Not too bad this week, just trying hard to avoid the showers............
GS started school, all children went in no bother but next day they were all crying haha. ED asked him how he got on and he said he had made no friends and he had no one to play with, ED's heart missed a beat. Big sister said she saw him running and playing with lots of children, what's he like???
About to saunter into town shortly, yes I said it, saunter, woo hoo xx
Yes, walkabout, he does have PD, and I suspect he's starting to get dementia too, but that could just be the depression & anxiety which will hopefully improve if we've finally got the meds sorted. I hope so. I always said I hadn't the patience to work with the elderly and confused - never mind LIVE with them!!
YD rang last night and we had a long chat/moan. I won't repeat any of her suggestions but they made me laugh. She knows her dad so well and knows just what to say to cheer me up.
Also "talked" (texts) with ES for the first time in ages. He was, of course, rude about my sat nav! He is convinced that he will get PD too, thinks he has some of the early warning symptoms. He's always been a bit of a hypochondriac so I tried to persuade him that just because it is sometimes hereditary doesn't mean he's bound to get it. He sent me pictures of some of the projects he's completed for clients - he has is own property improvement business; they were amazing! Proud mummy moment.
JCJ does your husband have Parkinson’s ? My dad had Parkinson’s with vascular dementia. With both it is a very hard disease to live with as movement and cognition go.I hope you got some rest in your holiday.
BENCHLAND is still helping me smile even though the current problems are completely non BC related! OH in anxious/tremor/panic loop. Again. Just had talk with doc on phone. He's going to up the dose of the anti d. he's been on for years, as that may help, and we know he can tolerate that. Apparently, it IS still one of the best anti d.s but isn't prescribed much for that any more because most people can't tolerate it! Fingers crossed this sorts it, because life is **** at the moment. For both of us. Been up half the night with him stressing, shaking and sweating! :'( Need to shop but daren't leave the house while he's in this state! *scavenges in cupboards for something edible*
Glad you arrived home safe and sound, have been thinking of you, hurrah for the sat nav!!
Maybe it's a good idea to shorten holidays, I know reality really hits when you return haha
Back to the mundane...........
Great all your girls enjoyed the camping even though it was a little challenging
ED has the job, phone call confirming Fri morning so all good, she doesn't start until Oct so gives her time to get her head around things.
We celebrated with takeaway and bottle of wine, woo hoo.
No party for Mum and I, was sooooooooooooooo relieved haha Mum was never going to go anyway...........
Catch up with shopping today, supermarket and shops around about, will go when I move from the "CBA" bench, not feeling it will be any time soon.
Don't worry JCJ we can do it another time, so something we can look forward to, no point when things are difficult, you would just be wondering what was going on all the time, big hugs xx
Hope the party wasn't too grim. You are right. Enjoy the family whilst they're there. Plenty of time for tidying up when they've gone! Good news about YD's work. Fingers crossed for Ed's interview. If she doesn't get it, she can console herself with the fact that it was good interview practice and it is possibly a bit too soon to be going back to work?
We are home. It's been a strange holiday: same ****, different place. A couple of times, during the fortnight he got into the anxiety-shaking-panicking cycle. One morning he said "I need a doctor" and I snapped at him: "NO you don't. You just need to calm down. You'll get even more anxious if we have to find and visit a doctor. Shall I call for an ambulance? That usually works!" He stopped shaking immediately!! That makes me rather less sympathetic, I'm afraid: he CAN stop it.
Yesterday, OH had worked himself up into such a state, fretting about the journey home, that he refused to leave the cottage. Again. (even though we've talked about the fact that getting out helps him!) I was furious, and left him to it; going off for a long walk by myself then driving to the chippy to fetch fish and chips for us for dinner. I found myself thinking how nice it would be to holiday on my own! I also decided that I probably won't bother booking another holiday, certainly not for 2 weeks. It's just not worth the stress.
Now we are home, though, I realise it was good to get away, so maybe....?
I used the satnav to get us home. It worked brilliantly and brought us back a non motorway route (he gets sooo anxious if we go faster than 50 or 60mph and motorways terrify him!) without me having to memorise a route. Oh can no longer even follow written directions in a car, never mind read a map. This cr***y disease has slowed down his thinking/processing abilities sooo much. Dementia here we come? :'(
We carted the wheelchair around, taking up space permanently in the car, and he used it just the once! Grrrr! He said he can't stand being in it because this time last year he was driving a car. I pointed out that this time NEXT year he could be completely housebound and might look back with regret that he didn't make the most of getting out while he could.!! 'll let that sink in. We'll see.
Loads of laundry, garden jobs and shopping to be done but I'm on the kn******* bench tonight (I woke up very early stressing about how I was going to get him home if he was still in the state he was in yesterday. Wasted energy. He's not been too bad at all today!!) Plenty of time tomorrow - and the next 2 weeks, because Norecambe doesn't look any more hopeful. Gutted. :'(
The girls survived GD' s first camping trip. YD said there were challenges but it hasn't put them off.
After such a lovely day, down to earth with a crunch, am not sure how to give you any encouraging advice??
You can always say if you are not going to do anything, perhaps it's better that we stay home from now on cause one day of happiness is not enough............
Of course you do have to make changes but the person also has to be willing to change too, it's a hard fact to learn that you are unable to do things the way you used to and mentally it is difficult but what is the choice realistically you either vegetate or live your life the best you can. It may not be possible everyday but every other day is good.
If it is an operation to fix knee then so be it, it will be fixed...........
You know your OH best and fingers crossed he will wake up!!!
YD and GS are here, house is like a bomb has hit haha, am enjoying it though and am curbing my "tidy up" gene. Can do it tomorrow, that's what I mean about another day and enjoying life.
She has work sorted and they have agreed to reduced hours so all good there.
ED had her first interview yesterday, it went well, she should know next week.
Am off to a party in the next hour or so it's mums birthday soon and other residents so they have decided to throw a party, mum doesn't want to go, neither do i haha xx
Today we did nothing. He said he hated every minute of being in the wheelchair. I give up. 😭
Thank you, Katy, for your support, as always. xx
MUCH better day today. OH very contrite and apologetic this morning, said he realised he's been focusing too much on his own problems and feeling sorry for himself. (much like I was last night ) He said he wanted me to be happy and we'd do what I wanted today. I made a nice salad lunch and then we drove down to a promenade we've been to before so I knew where the toilets were and where to park. It was busier than last time but we found a space. Then we walked along the prom *with him in the wheelchair* hurrah!! He was grudging at first, but I think he did appreciate that it was better. Back to car. Ice cream. I had a paddle in the sea. Yey! At last.) Then he said he'd walk to the toilets and I knew they were further than he thought, so I went with him with the chair. Do you know he walked sooo much better because he wasn't panicking about freezing or his knee hurting too much. When he couldn't walk any more, he just got in the chair. A major breakthrough - fingers crossed! Back to car and I walked into town to fetch us pizza and wedges. Nom Nom Nom. Spent ages, sat in the car, eating pizza, drinking tea (I bought the flask today!) watching the boats on the sea and all the goings on on the beach and the prom. In the end it was me that had to drag HIM away. He's so much more relaxed tonight, but he'll never admit he enjoyed today! It's all I wanted. A proper day at the seaside. I'm happy now. No more bench smashing.
I've restored both the CSL bench and the FF bench to their former glory and I'm currently supping tea on the Good Citizen bench. Whilst waiting for the pizza, I went outside and saw a debit card on the floor under a bench. It didn't belong to the lady sitting on the bench so I took it back into the pizza shop (pub game: match the spots!) and asked if the Mr G P***** might be a customer of theirs. The guy pointed to his colleague! The card belonged to someone who worked in the pizza shop and he didn't even know he'd lost it!! He was soooo grateful. I'm glad I stopped somebody else using it contactlessly (is that even a word?) and clearing out his account. Pats self on head.
Tomorrow, I will let OH choose what we do.
Just smashed the CSL bench to pieces with the FF one. Sorry. I will replace it.
OH just said that my melt down upset him and that HE's the one that is ill. He actually said, "You're killing me" (Don't even tempt me!!) Oh. Sorry. I temporarily forgot that I'm not allowed to have feelings and frustrations even though my life is hugely restricted by this **** disease too. Grrrrrr.
I so need a proper holiday, but that's not going to happen.
Right. Got to stop feeling sorry for myself - or letting him see when I'm struggling . Onwards and upwards. Paste the smile back on.
Just had a bit of a melt down that I didn't manage to hide from OH. 2 days of nearly constant wind and rain when we've been stuck in the cottage. I did manage to nip to the local shop on Saturday, and had a walk for about an hour after the rain stopped yesterday, but otherwise we've been pretty cooped up. Today has been sunny, on and off, so after lunch, we set off for a nearby seaside town to test the sat nav. Worked great. Got there fine, but then the troubles started! Usual problem of where to park. OH still not using wheelchair. I found a space on the prom. OH said he'd had a panic attack in the car and his chest hurt. We hobbled to a bench. When he felt better, I went off to find a supermarket for a quick food shop. As usual, bought more than I intended and had to carry it all back to the car. On the way back I met OH struggling to walk the 300 yards to the toilets. "Stay there. I'll get the car." Nightmare getting out of parking space and when I eventually get back to OH, a well meaning but thoroughly annoying man had forced him to sit on a chair, fetched from a nearby kiosk, because he looked so unwell, despite his assurances that I was on my way and he was fine. I thought something terrible had happened! Anyway. Drive to loos. Then he says he wanted to "get away from the traffic to a quiet park inland somewhere" Oh. OK. I'll just conjure one up shall I? Study map - and sat nav - can't find anywhere suitable. Want cup of tea. Desperately. Find cafe. It's nearly 5, so it's closing. OH announces we may as well go back to cottage. So I drive back.
"It's a good job I bought something we can have for dinner"
"Why wouldn't you?"
BECAUSE I THOUGHT WE MIGHT ACTUALLY EAT OUT SOMEWHERE SO I DONT HAVE TO COOK..... AGAIN!! Shouted that in my head, not out loud, of course!
So, we finally got to go out and all I did was the food shop and run around after him. I was ****ed off to say the least. Alternating between the CSL bench and the FF one. I've put them next to each other so I can have one buttock on each.
Steak pie is cooking in oven and I've prepped some veg. So much for a paddle in the sea and a pub meal.
It may have made him realise that it'll make my life easier if he'd use the damn chair! He's also said he should have agreed to try the other anti d.s before we came away. So some progress, I suppose.
Rant over. Normality - the latest version of it anyway - will be restored shortly.
Brilliant BB and that you are happily using it all over the place, makes a huge difference, no more parking tickets etc unless you place the badge upside down or something like that haha.
Have you been playing with the sat nav??
Good luck to you with that haha.
Hopefully you are succeeding with OH and the chair.
Still constantly raining here............
Have been on a new bench the "supremely lazy" it's next to the "CBA" bench so I can hop between the two without having to move too much...........
Am just waiting for YD and GS to arrive, they have a couple of appts this week, one being deciding a return to work date.
GS has his 8 month screening, he is 10 months old now but they have to deduct 8 weeks because he was premature, can hardly believe it, where has the time gone?
ED is also busy this week she has a job interview, she is in two minds about going back to work this early but this is a good time to apply. Will just have to wait and see...........xx
PS no daft rules, Katy.
PPS sooo glad I fought to get the Blue badge. Used it 3 times today. And it's free to park here with a BB! Yay!
Wednesday, we went into town. Dropped off OH outside a charity shop and found somewhere to park. Went to catalogue shopping place to order a satnav. Returned to where I left OH. Not there, but I found him on a nearby bench! Visited a lovely little art gallery with loads of nice paintings/photographs by local artists, but he couldn't stand up for long enough to appreciate everything. Over a cup of tea, outside the cafe next door, I broached the subject of the wheelchair, saying how much easier it would be for both of us. He said he doesn't feel safe in it. Ah. There we have it! I said he'd probably get used to it and any of the nearby promenades (there's, literally, MILES of promenade around here) would be a great place to start. He seemed to agree but then was determined to walk with me back to the car - to prove he doesn't need the chair? - He made it to just round the corner from the car park and I fetched the car to pick him up. Yesterday he was overtired, probably in pain and in a megasulk! I left him to rest in the cottage and went off for a walk for a couple of hours.
Today has been much better. We went to a park, parked in a disabled space, with a nice view of the boating lake and the sea in the distance, and I left him to potter about near/in the car while I legged it into town to pick up the satnav and some loo roll (that was a faff: went into 3 shops before I found a pack with less than 12 rolls! We're in a holiday cottage; I don't need 18 bog rolls for just over a week and they're bulky to take home!!) picnic lunch in the car. Drive to the promenade to look at the sea and eat an ice cream. Swim in leisure centre pool then chippy tea in a cafe on the way back to cottage. Longest day out we've had in a very long time. OH in a great mood tonight. But tomorrow????!!! I'm on the kn*****ed bench, never mind him! Ah well. I'll have the satnav to play with. If I can get it set up: this old dog's going to have to learn a new trick!
Woo hoo you are officially on holiday
Hopefully you can persuade OH and you can explore together. No crazy rules at this cottage???
Reasonably quiet this week, have been feeling really tired and was thinking what's up with me??had a lightbulb moment this morning, it's the hayfever tablets.................silly me!
Went up to see Mum yesterday and she was a touch grumpy, she is refusing to take any of her tablets, one of which is an antidepressant spoke to nurses and Mum, will just have to wait and see.
Good job am quiet this week cause next week is crazy...............am away to pop over to the "CBA" bench for the rest of this evening, a bar of choc is calling me, better hurry xx
Glad you survived the babysitting Katy.
I understand your reluctance to signpost your illness, grumpy, by getting a mobility scooter. You'll just have to tell everyone it's for ASBO boy?
OH needed a rest yesterday after the trauma of getting here, (!!) so I took a walk up to the shop and had a rece of the Indian Takeaway and the pub that are in walking distance - fo me anyway; he'd never manage it. There's a pavement all the way, so I could probably push the wheelchair but it's a bit hilly in places! Can't get him in the damn thing anyway. Grrrr. Went to Colwyn Bay today, in the car, because it is only a couple of miles away. Lovely, long, flat promenade (very like Norecambe!). Would have been ideal to push the wheelchair along - in fact there were lots of other people in wheelchairs and mobility scooters - but he refused. Just sat on a bench in a shelter, 50m from the car, while I ran to and fro fetching ice cream, and his kindle from the car, before going for a stroll along the prom by myself, constantly stressing about whether he was OK, because he had a bit of a shaky, panicky episode this morning.
Apart from his aversion to 'the chair', he's doing incredibly well though, so I shouldn't complain. Being on holiday really highlights how much less he can do now - and how much more I have to do: driving, navigating, finding parking right by where we need to be, when I don't even know where we need to be because we've never been here before! So used to bunging the car in the nearest car park and exploring on foot. Can't do that any more. I'm definitely going to have to work on him to get in the wheelchair. He thinks he'll be more trouble in it, I think, but it would make my life so much easier!! Softly, softly, gently, gently, we WILL get there!!
Going to try and buy a sat nav. (and learn how to use it!!) I managed to memorise the route to the promenade, today, but it was only just down the road; if we want to visit anywhere further afield, I'll need something to help me. Holidays! So relaxing?! Find myself wishing he liked coach tours! Still, the cottage is comfortable, has a lovely sun room and a garden to sit in - with a summerhouse that has a sea view: just about!
Help, help let me out!!! Thought you would have been in your boot sooner JCJ. Hope you are having a lovely holiday and weather is good???
Babysitting went well thanks to eldest GD, she was a great help, we went to a burger place for tea then a walk in the park cause weather was lovely, came home and we all settled down I then managed to drop a whole bottle of milk all over the floor grrrrrrrrrrrrrrrr, took absolutely ages to clean up. GS decided he would like to have a bath that was a whole other story, I could not get the bath switch to turn back into shower mode, another grrrrrrrrrrrrrrrr. Did eventually get it working. Surprisingly I stayed super calm.
We all went to bed at 9pm, youngest GD has decided in recent weeks to wake every 4 hours and she did haha. She was sleeping all night but maybe regression?? Who knows? Despite my mishaps I did enjoy having them
Oooh grumpy, nail varnish, all those colours, salon opening soon xx
I have thought about a scooter - and yes the ASBO boy would love it, wearing goggles and a crash hat - but I don't want to do it yet. Everyone would then know that I am 'ill' and I want to keep it a secret for as long as possible. It's not false pride, rather a need to have as normal a life as possible for as long as possible......
There is a bonus to the bone strengthening meds - I've got nails like you wouldn't believe!!! I may have to buy coloured nail polish soon, first time in 30 years.
We made it!! We've arrived. OH made a major effort this morning to keep his holiday panics and hideous mood at bay. Hurrah!
Took forever to get here as we had miles of 30mph due to the National Eisteddfod (no apparent need for the speed restriction though!) and OH can no longer navigate because he can't sit in the front of the car without panicking - and he can't think fast enough to follow a map either, so we got lost and ended up going to Llandudno for something to eat and for me to have a desperately needed wee! Public toilets shut at 4:30pm on a Sunday. What? What kind of seaside resort shuts its loos at 4:30?? Fruitless, frantic search for alternative facilities. I had to go into a pub. I chose one with outside seating so I could brazenly waltz in and pretend I was a customer! Then we went into a chippy restaurant, (that was right near where the car was parked,!) and there was a sign in the window saying it was part of the community toilet scheme and anyone could use their facilities. Oh. I take it back. Not such a **** seaside resort.
Hope your babysitting went well, Katy, or are you still secreted in the boot of my car?
Fatigue is horrible, Grumpy, but thank goodness for buses? Time to get yourself a mobility scooter maybe? I'm sure ASBO boy will love riding in the basket on the front!
Thank you both sooooooooooo much, was exhausted yesterday and slept for hours afterwards haha!!
grumpy, you managed the mile so that is brilliant in it's self!
Oh my you are not only a GODDESS but now a SUPER/DUPER one!! 15% what?? we will need to try at next party
Haha that'll teach him.........
Up to see Mum shortly, just trying to remove myself from the CBA bench, am really trying, honestly. Then off to supermarket, am babysitting tomorrow for ED's three, better get to bed at 5pm tonight haha, never had the three of them before so you never know I may stowaway in the back of your holiday car JCJ, just warning you so you don't get a fright hee hee.
Right better start moving xx
Well done, Katy!!!! I'm so pleased for you.
At our house, the cancer fatigue is becoming more and more frustrating. Helplines, literature, Mc nurse all give the same advice which I am following and it's having no impact. Today took the ASBO boy for a walk to the lake, just over 1 mile, and had to come home on the bus. Grrrr!!!!!
WeeeeeeeHooooooo! Dancing around the house. All clear. Fab news, Katy. Have another glitterberry juice.
Which reminds me: I always pick up any cans + bottles that people have left strewn around, on my way back from my chippy trip, and put them in our recycling bins. (readjusts recently polished halo ). Anyway, the other week, I found a nearly full bottle of raspberry schnapps glitter 15% alcohol. I didn't try it; just tipped it away, but it did make me smile and think of BENCHLAND!
Left OH in pub and went to do supermarket shop. Told him I was on my way home but he asked for longer. I was only half way through putting the shopping away when he texted to be picked up. Told him he'll have to wait until it's all away and I've had this mugatea and a sit down!! Hmmm. That will come back and bite me?
Just back home, I have the all clear, woo hoo!!! Balloons on benches, glitterberry juice being swallowed and cake eaten..........
Check up in 9 months, hurrah.
Hope your OH is behaving today JCJ, you can understand him trying to behave normally and it does take it's toll. Fingers crossed he doesn't start feeling anxious about your holiday.
You are THE Domestic Goddess xx
The girls got back OK. 5 hours after leaving here, but they stopped for food half way. GD was a "sleepy little angel" all the way which they put down to "magic nana" cuddles.
Good news you've found a better route to your YD's. She won't seem so far away now. Fingers crossed for appointment tomorrow, that it's all gone.
We've had a tough couple of days. OH' was great at the weekend, but the effort to try to appear 'normal' took it out of him and he's been anxious, depressed and extremely grumpy!! I was seriously doubting whether we'll get away on Sunday. He was talking about going back to docs this morning, but he's been much better today, though, and we've just been to the vol allotment. I've attacked a wilderness of weeds: (we've not been for 2 weeks because of the heat and rain) , planted a gazillion leeks and dug up a few spuds. OH and a volunteer picked loads of broad beans that had gone over. They'll all go to waste. I hope he hasn't overdone it. Don't want him back in grumpy, shaky mode!
While I've been trapped at home with him, I've been quite the domestic goddess. Yes really! I know you're shocked. I've cleaned the cooker extractor and replaced the filter, defrosted the freezer, mowed the front lawn, made 12 jars of blackcurrant jam and knitted half a diminutive monkey (YD's best friend is pregnant and YD has asked me to knit a safari mobile for her). Wish dinner would hurry up and cook because I'm starving!!
so glad your girls were with you at the weekend, pity about the awful weather..........
i know you have to keep busy, what are we like?
hopefully they are home safe and sound.
just heard thunder a moment ago and its pouring down, yuck
had a lovely time and have found a way that cuts costs in half, woo hoo and there is no danger of me getting lost haha.
just as well............
have my check up tomorrow, to see if c has gone, it's looking good.completely different than before, if i need anymore treatment they will do it there and then, am feeling optimistic that it's done, fingers crossed xx
Hope you didn't get/aren't still lost KTC.
My girls have just left. So hard to see them go. Won't see them until October when they come for the Cher concert. I'm still "Magic Nana" because I managed to settle GD a couple of times and get her off to sllep for a nap so her mummies could have a break. Good practice for when we're on babysitting duty - although a lot changes in 3 months at this age!!
It was less upsetting to part with the tent than it could have been as it's been throwing it down with rain all weekend and they got soaked trying to get everything in the car (while I cuddled GD)! Overheard DIL discussing the tents with YD and she said, "You can still go camping with your mum"
I'm making marmalade (ready prepared oranges in a tin!) for OH, to distract myself. It's a long 4+ hour wait until I can expect a message to say they got home safe, and I can relax. It was certainly too hot last week to make marmalade. Or the humongous batch (2 batches?) of blackcurrant jam I need to make from the fruit picked on the vol. allotment. Half of it will go to the food bank, as it is more useful to them in jam form than the fruit on its own.
Wonderful news, grumpy, so glad meds are working, Revcat sends her love to you x
Oh my OH bearing all?? Lets hope he didn't leave the car...........
Have a fab time with your girls, woo hoo.
Grey and sticky hot some rain on and off this morning already, yuck.
Adventure starts soon, may give in and just get a taxi, CBA getting lost??? xx
Great news, Grumpy!! Here's to cancer meds doing their stuff! Long may they continue to do so. Hope the "botty burps" (ASBO boy's, not yours ) didn't fumigate you out.
Another excuse for a party, especially combined with me finishing my round Jersey swim last night. 45 miles, but I couldn't tell you where I ended up, or how long it took. Did I start it in September? Who knows? That information is long gone, along with the original website. Only had 5 lengths left to swim last night, and the water felt so lovely and cool after an impossibly hot day, so I took it easy. By the wonders of virtuality, I also started the next swim challenge: 31 miles. The length of the River Anker. This has the added advantage that, at about the half way point, I can pop home for a mugatea because the river passes through our village!
On the topic of swimming, just saved OH major embarrassment. He decided, as it was so hot yesterday evening, to wear just his swimming trunks (the old fashioned style, not budgie smugglers - perish the thought!) Obviously, I don't usually see him wearing his trunks because I'm in the car park when he's swimming, so I don't know how long they've been like it, but the trunks had a large split up the back seem, revealing a fair amount of.... Um.... flesh! I have now mended them. Modesty will be intact tonight.
Funny thing happened yesterday: phone rang. I picked it up, listened for a couple of seconds and then snapped, "NO it isn't. **** Off!" (I didn't use asterisks, but a very rude word that I wouldn't even spell with sparklers! ) and put the phone down. OH's face was an a absolute picture!! Until I reassured him that it was (yet another) automated call claiming to be from Visa Security. We have had lots of these calls recently. All the same voice. All from different numbers, because I block the number each time. He genuinely thought I was being that rude to an actual person. So funny. Hehehehe.
Hope you find an easier way to get to YD's. After the first few times, you'll know the route and won't get lost.
My girls coming today. Yippee. So excited. Glad it's a wee bit cooler for their journey.
Good news today - saw the oncologist, and the latest scan shows all the Mets are reducing!!!! The meds are working properly. I did tell him I fully intend be a medical miracle......
Off to bed with a celebratory tipple, and a small hot dog (he gets botty burps when he feels the heat)
Yes, no exploding arm, first attempt, woo hoo, all done!!!
That's brilliant that they are coming for weekend, you must feel very happy indeed
Be lovely to see your girls and have some special time with baby!!
Tenting may happen again, you just never know and at least you have the tents, wouldn't fancy tenting on my own either.............
Went through yesterday, all went well and am off again on Sat, was terribly sluggish though. Friend called last night and suggested lunch, said yes, wasn't at all sure because of the lethargy, went anyway and had a lovely time am soooooooo glad I agreed to go
ED researched last night the best way to get to YD's, bus takes an age, taxi is horrendously expensive, so she has come up with an idea, will try fingers crossed I am not wandering around lost...........(remember when I didn't know where I was/had been???)
Hot here too wore shorts today, woo hoo feel as though I'm on holiday xx
Hope lido went OK yesterday, Katy, with no exploding arms or other inconveniences! Hope it wasn't as hot for you there as it was here!! Also hope Mum is OK after her fall.
Soooo hot yesterday. Could barely do anything but sit in the shade in the slight (warm) breeze past the house. Grandaddy of a thunderstorm during the night for over 2 hours. Constant lightning at one point, and sudden strong wind which sprang up from nowhere and lasted about 15 minutes - just long enough for me to dash around the house closing windows! It's still hot today, but nothing like as unbearable. However, it's forecast to be the hottest day EVER tomorrow: 34°!!
I CBA to cook yesterday, and I thought OH needed to get away from the house, so we went to a chippy that has a cafe and air conditioning!
The girls are coming on Friday until Sunday lunchtime. YD thinks it will be fine as long as they don't try to travel in the evening; GD happy to nap in her car seat in the daytime, but bedtime means bedtime!!
YD has asked if she can borrow the tent as theirs isn't really big enough for 3. I told her she can have it because we bought it to salvage our Anglesey holiday, knowing that they would use it if we didn't. They have been invited to a birthday camping weekend in the middle of August, just 1/2 hour away from home, so if the worst comes to the worst, DIL can just take GD home for the night. They won't have to cook and there'll be other parents there to assist (and understand if GD is a tad unsettled at night!!) An ideal first attempt at camping as a family and one they weren't expecting this year. It'll be bittersweet for me, parting with the tent, (especially on the very weekend we'd be using it if I hadn't refused to drag her away from new baby!!) although I know OH & I won't be camping again, and if YD and I do go again, she can bring the tent! She has offered to give me theirs (21st birthday present from me) in case I ever want to camp on my own. Can't see that happening somehow.
Thinking of you in this hot weather, FF, and hoping you're not suffering too much. xx
Am home, woo hoo!!
Glad your OH managed out and about with friend, JCJ.
Fingers crossed you will see all your girls this weekend.
Hopefully you now feel a little less tired, a lot going on for you at the moment.
Well, we had a very good time, pretty lazy really, one day of rain so not too bad. We laughed a lot..........lodge was a great size so we had plenty of room, large verandah area, no meals outside not warm enough haha.
Just before I left had a phone call from care home, Mum had fallen and cut her arm, they reassured me and told me they would phone me again if anything worsened etc. I phoned them next day and spoke to nurse so all ok. Went up earlier today oh my what a mess...............have asked her not to get up by herself and to please call for someone, this was the first fall she has had in 5 months before that it was every other day.
Lido tomorrow, fingers crossed everything goes well ie. no blown up arm haha.
Then next day off to see YD and GS with ED and GD, will be back through at weekend for a couple of days, feels as though I've not seen them for ages...............what am I like??? xx
Sooo tired. Looong week with leavers' performance and evening "do", moving classrooms and all the other end-of-school-year mayhem. Barely been able to speak today. Thank goodness we're not going away until 4th August - gives me plenty of time to recover!
The girls had a successful holiday, for 4 days /3 nights in the Peak District, this week, but the journey home was somewhat stressful, I gather, so I don't know if they'll brave coming to us next weekend as planned. YD said "never again" to travelling with GD in the evening!! I think they had to have several lengthy stops to feed her and try and settle her, in what was already a long journey.
I hope you are enjoying your holiday, KTC, and the weather is being kind. Right by the beach! Lucky you!
OH still doing OK (though I'm finding his grunts, groans, jaw clanking and scratching noises even more irritating because I have no patience when I'm tired!!) He did manage the long day to Buxton, on Monday, without any repercussions, and seemed, if anything, to have more energy to do things this week. The trip away obviously did him good. I think that scare with the new med has motivated him to try harder at managing his moods too. It's looking a little bit more hopeful that I might be able to get away without him. I'll wait a while before risking broaching the subject though!
Quick pop in....
Place very nice we are almost on the beach hurrah. Good weather for first 2 days a little rain today children about to go swimming x
When are you off JCJ? X
No Dr's appointments in the pipeline, because he's cancelled them. I'm not going to press him to take anything else for a while, but I will gently remind him that it is an option if/when he starts making both our lives a misery again with his anxiety, anger and over sensitivity. Much better weekend. 2 a-maze-ing mens finals at Wimbledon helped, but he would have been totally unable to have watched, let alone enjoyed, them last week! I was expecting a lot of anxiety about tomorrow's outing, but so far, so good. I am almost daring to start looking forward to Whole afternoon and evening to myself for the first time in what feels like years! Though I am going to waste some of it doing the S********'s shop. But at least I will be able to do that without stressing about him.
BB and wheelchair are out of my car and left ready, as requested by his friend. Fingers crossed they both cope.
Have you tried the one a day non drowsy hay-fever tablets that you can get in all the major supermarkets? OH suffers with hay-fever but, as long as he takes them every day - maybe a 2nd half way through bad days - they seem to work.
I hope you have some lovely weather for your holiday, but not too hot. How long are you away for?
Am so glad side effects seem to be diminishing and you had a nice time out and about, what happens now? Does OH have to go back to docs? Does he start another kind? Isn't it ironic that a pill aggravates and makes worse the things that it's meant to actually help
We are all off tomorrow, all sorts packed, shorts, cardis, thick jacket, thin jacket, shoes, sandals, have to cover for everything haha.
Hayfever tabs are def starting to work but making me really sleepy, won't be a party animal then??? haha xx
The anti d. leaflet listed tremors and sweating as common SEs (don't know why they picked that one to give to PD patient who already struggles with tremors!) and these SEs undoubtedly triggered panic attacks. However, I'm fairly sure the idea of taking new meds wasn't the initial problem because he was fine for the first week - better than he'd been in ages. If he'd started taking them when they were prescribed, rather than over a week later, the SEs may have been obvious to Dr when he went back 2 weeks later. I bet he didn't tell her then that he'd been taking them for less than a week!!
Today was considerably better than last Saturday! We actually managed a light lunch in a cafe (well, outside, actually) in local town. Parked in same space where I got parking fine and displayed the BB. Take that Mrs!! OH got something for YD's birthday next week (32!! How did that happen?!!) and visited his favourite charity shop while I got some bits. Success.
Then we came home and watched the Wimbledon finals. The men's doubles was phenomenal!! No ambulances called. In fact, today has been the first day, since last Saturday, when he's not had a shaking/sweating/heart racing attack, so hopefully the SEs have now worn off. I'm bracing myself for the anxiety and depression to start again!
Have a fab time with the family near the sea, Katy, I hope it helps the hay-fever.
Can't remember where you started either haha..........
Is it panic attacks JCJ? They can cause all sort of things to occur.
Maybe new tabs that sent him into a spin, will they work? what if they don't? The personal happening?
It's difficult going or not going JCJ, but phone call is good and you can always get in touch if you are not sure about something. Remember feeling kinda flat when all appts were over, you feel as though you should be elated but mentally you are not, that little safety net of actually seeing someone does wonders for you at the time......... I remember being told that
the cases of either onc or surgeon finding anything by touch are minimal,
Am having real bother with hayfever have been given tabs, spray and drops now, everyone is saying this is worst year ever, fingers crossed it all calms down soon. We are near the sea next week so that should make a huge difference xx
Appointment didn't happen. OH cancelled it. I was furious, frustrated and fuming but in hindsight, as he's still having bouts of sweating, shaking and heart racing, it's perhaps just as well: If he'd been like that at Dr's, he probably would have ended up in hospital!! I really don't know what is going on, yesterday, he started a full-on tremor attack, which lasted over an hour, just by remembering how ill he had felt on Saturday!! (or did he remember because he subconsciously recognised it was starting before he was aware consciously?) Also, at Dr's surgery his heartbeat was over 200, life-threateningly high, yet, despite the extreme stress of impending ambulance and hospital, it was back to near normal within an hour. It looks to me like he does have some control over it albeit subconsciously. He so desperately didn't want to go to hospital!! I'm hoping, as the attacks seem to be lasting less time and are further apart, that it is still the SE and will eventually wear off.
I can fully understand his reluctance to try any other new meds!!
Yesterday, I had a phone call from the hospital: told not to attend my onc appointment next week!! Apparently, I was supposed to see the REACT trial nurse but she has left. When I saw the onc last year, she did mention that my annual check ups would move to the trials clinic, or even be done over the phone, but then I got the usual appointment letter in the post. When I said I quite liked the security of these check ups, she did offer to book me in with onc's clinic, but I realised she has a tremendous workload and really there's no need for me to schlep over to the hospital and waste her time. Also I always get neurotic as each onc appointment approaches, so stopping them might be less stressful!! We did the consultation, then and there, over the phone. But no boob grope, obviously They'll ring again this time next year, presumably just to check I'm still alive and haven't suffered any serious SEs of REACT drug or Tapoxyfen. She asked me if I'd been given any bone strengthening meds. "No. Should I have been?!!" and whether I'd been admitted to hospital with any injuries! Again, were you expecting me to have been?Is this something that's likely to happen ?
Been swimming tonight. Just over a mile left of my 45 mile round Jersey swim now. Party at wherever I end up (same place I started, but I can't remember where that was and the app with the map is long gone - just recording my swims myself) the week after next.
Hope all is well with appt today JCJ, and OH manages to have something that will calm rather than exacerbate.........totally scary times. Your head must be spinning. Fingers crossed that things will be better soon. That's the thing everyone is different regarding side effects, some have no bother and others have every side effect imaginable
Yes we now have somewhere to go haha, booked yesterday morning, ED and I were looking at the same place, at the same time, we are off on Mon, woo hoo!!
No bargain, well minimal, but big enough for 7, we are heading to near the border.
A bug has decided to visit, tummy yuck last night, better today, hopefully gone tomorrow haha xx
Update: OH much better today.
I braved going to work but kept my phone in my pocket and left strict instructions for him to call me if he felt unwell. It's only a 10 minute drive home. Text message from him to say he was OK (he was asleep when I left) fortunately arrived BEFORE the one saying "You are expected at the ****** ***** hospital....." : only a reminder about onc appointment next week, but for a second it alarmed me and I let out an involuntary "WHAT??!!" to the consternation of colleagues! To quote KTC: what are we like?