Why does things always happen on Sunday, I feel like throwing in the towel, just walking out the door, really feel I can't cope, George opened his catheter all over again the floor, just going to sit down and he did his party piece, nearly every Sunday he does this, feel like sitting In The middle of the room and banging my legs on the floor and screaming, so tired!!!!!!! Anyone want to run away with me? Somewhere hot and quiet xxxxxx Yvonne xxxxx
Sunday : Why does things always happen on... - PSP Association
Sunday
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Yvonneandgeorge
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Me please? ⛱🌅🏖🌞✈️❤️
Me and my mother definitely going with you.. wait for us plzzzz but make it for a long time plzzzz :))
And about sunday.. my dad prefers saturdays more .. really dont know why... once saturday is ended.. ohohho.. lets start our week.
Xxx
Ok ladies just looking for something nice for us xxxx
Life here prefers Mondays! Just had 7.5 quake in NZ Kaikoura SI area. Felt it here in upper N Island! Happened just after midnight so only just finding full damage in daylight. 2 deaths, big holes in roads, damage in Wellington, tsunami warnings, 2m wave Kaikoura. Evolving! Can I come too???
Of course you can hope everything is ok there x
Wellington deserted. Huge landslips, roads inaccessible around Kaikoura. I am well north so am fine.
Are you ok? any tsunamis? did they find the epicenter?
America is "smart" and we Frack for oil.....that pretty much means they extract the liquid (usually oil or something) content from under the ground leaving a lacing of empty space. Well you know what happens to empty space? it collapses till it filled up again......thus causing earthquakes Now the big oil boys don't believe the strange earthquakes are caused because of fracking.......but what about the collapsed holes in the ground where there were once houses and people living in them? There is a high rise in san Francisco that is sunk 16 inches and tilted IDK how many inchis. This is due to a newly built transit system sucking out millions of galllons of water that used to hold up the now sinking building.....San Francisco is on a fault line.....it will be the first to go...
Anyway I hope you are ok......Stay uupright in NZ!
AVB
I am a long way from epicentre,. Think the whole of country felt it though. Main disaster area between Wellington and Christchurch. Kaikoura where you go to see the whales is devastated and cut off except by sea. Navy on way to rescue. Now it is raining hard and blowing. Not nice for camping or hanging in there! Won't get rescued till Sunday!
Yes fracking been done here too, by Aussie company and think an American one too! Caused small quakes.
Trying to blame moon for these current quakes! So why have there not been others all round world?
Look on website geonet.org.nz/quakes there is 1 every 1-2 minutes at present, most between Wellington and Kaikoura. One report said ground had moved 2m!
I know someone in Nelson. Is that affected ?
I do worry about fracking.
Nelson got a sound beating up but not serious I believe. They have a mountain between them and Picton and Kaikoura. Road picton-nelson closed for checking. Think effects more likely relatively minor but could be some damage as shaking was violent, esp for me to feel them in Hamilton!
I have been in Greece and Cyprus we there was an earthquake was horrible, hope you are all ok, saying a prayer for you all xxxxx
Prayer needed for those at epicenter. I am fine, just surprised to have felt quake! Knew it must be big to feel it here as don't get more than odd tremble!
Oklahoma is a state just west of me. It is rich with oil. I read an article about fracking and I feel a little more educated. It is not so much the extraction of the oil and gas but the pumping in of waste water back into the underground that may cause these earthquakes. Oklahoma has one every several minutes. One of them was 7.5 enough to flatten houses but i think everyone is ok. We need to look up (into the sky) for cleaner less detrimental forms of fuel.....solar, wind and maybe just less consumption as I sit here on my computer that works on electricity!!!
Theres gotta be a way
AVb
Oh I'm so sorry. Sometimes it feels like all we do is clean up. Hang in there!
Wheee we going? I don't mind anywhere away from Psp? Let's go Yvonne my suitcase is packed! Where shall we meet? .
We how about Heathrow seems good, somewhere hot xxxx
Don't tempt me!!!
I so get where you are coming from.
I have not been posting for some weeks because every day has been a struggle to survive emotionally.
Hey, I've not tried the middle of the floor one... thanks... I tend to ward the sitting in the corner and screaming method. No, it does not work.
Big hugs
Kevin
XXXX
PS Now there's a thing for the press - a whole board running away to paradise together. You see you are inciting insurrection!
Oh, Yvonne - Its hard.
More hugs
XXXX
Aww Kevin where you been? We MISS you and Liz!! I've been worried about you but thought you'll return in your own time....Yvonne needs a massive hug!! Wish we could all meet up and have ☕️ And 🍰 And 🍷And just sit and relax and laugh and simply have fun!! X
Hi Satt
You were wise to give me time to return. Thanks for that.
I can't post today - only reply to posts - some glitch.
Yes, I have so many hugs for Yvonne and all. It can get tough.
I will post again when they sort my account out. Hopefully Monday
Hugs to you.
Kevin
XXX
Pleased to see you back! Missed you too. Hope you are managing with your new normal. Hugs! Jen
Also been thinking about you Kevin , welcome back. X
Oh how I wish we could go go and relax with nothing to worry about, sick of this PSP, maybe I'll go in the garden and just scream xxxx
Me I thump walls, God knows what the neighbours think (although they make enough noise) don't do my fists any good either, maybe I should try screaming in the corner
Had wondered where you'd been Kevin
Love Debbie xxx
Hugs Yvonne, I'm so sorry . But you know it's so good that we feel free to rant on here because when I read these rants it makes me feel I'm "normal" in the way I feel. I lie in bed and think tomorrow I'll not get upset, nor shout and rant, then a major mishap and I too feel like slamming thro the door. The sufferer has no quality of life and neither has the carer. It's a no win situation. Visit from a social worker tomorrow, she'll be repeating herself for third time, we never seem to get anywhere .xx
True no win all round
But obviously I appreciate a million trillion billion zillion times worse for the Psp patients x
Oh I so agree, I often wonder how I'd cope with the illness,it's just awful x
This is not a life for either of us, so much sadness, don't want to shout our get upset but can't help it. Just want to get up a say, I'm going out for the day today, which is impossible xxxx
True Yvonne, I've just had to change bed, twice in night he pulled convenes off , then when I'm getting him out of bed on the Sara Stedy he stands and wees all over me , just had to shower us both , and so it goes on. I get 3 hours flexi sitting and that's it , hospice day care took him for 18 weeks. I'm now trying to find a day care, social worker has come up with nothing so I started my own hunting and tomorrow we are trialing a place. They will only take him after assessment of toilet situation. Oh Lord , it's going to be a no no , I'm sure. Xx
I'm with you, Yvonne !!
Chris got me up at 3.30 am. Had removed his convene. Then, after I got him settled complained I was walking about, why wasn't I asleep ?
I shouted " Its because you got me up at 3.30 and I can't just go back to sleep !!"
I probably woke all the neighbours.
Somewhere warm ?
Love, Jean x
Jean, those early mornings are a killer, especially when you can't go back to sleep, I hate nights and getting to hate mornings, how depressing do I sound😂😂😂😂
It does help to be able to get it off your chest, doesn't it? Hope Monday is full of joy! Prayers for you and all caregivers...lots of prayers.
Here's to Monday !!!!!!
I'm coming. Passport at the ready. ☀️☀️☀️🛀🛀😴😴
Lol how funny, count me in xx
I get the mysterious "convene just came off" routine periodically. Whole bed including duvet which is hard to wash as so bulky. Also the other end. Says he wants to go to toilet but first lot is already done then the next bit just goes on floor cos he won't sit on toilet for ages. Does my head in every time. I dread every day now. Language no barrier. Marie
The soggy pads in the morning make me retch and as for clearing up No2's I have to keep running out the room and do it in stages, don't know how I'm going to manage it as things get worse! F can still help me to help him at the moment
Love Debbie
Xxx
Soggy pads very strong smell but strange to say you do become accustomed. Other end is taking a bit longer to accept I'm afraid.
Just read Julie's post and I have to agree bout men and their constant fiddling. Good job we don't walk around with our hands down our droobs. Now there's a picture lol
I've threatened to put Chris' hands in a straight jacket and he kept it on last night !
xxx
fiddling is part ro Psp
loll,jill#
xxxxx
Yes to a lovely warm break! I have this theory with men and fiddling with their bits they have to keep checking to make sure it has not fallen off! Our grandson is just a year old and has found his!
You all have a good day I am off to pack!
Julie x
I think we need a big plane by the sounds of things we're all coming. Count me and dad in xxx
well Yvonne and George what can I say except can I come I think judging by the comments hear I must be the best no covenes no catheters no tantrums if fall over my wife pulls my hair and says I cant stand it anymore I think with the amount of falls I'm having I shall be bald in 5 days I'm the one with blood all over himself and she cant stand it I am falling a lot more lately it does make her very nervous AND ME as well the temp is in the 30 and summer has not started yet mates it was 36 on think it was saturday mates so its very quiet as well does that invitation still stand being a mere male and maybe possibly be bald by sunday I begin to wonder if I am bettrr off having my hair pulled or surround by red bloodied females ps I have never mentioned my wife before but this time I could not resist it but I will never mention her again it makes me feel disloyal especially after nearly 60 years mates in march ########### food for thought/ peter jones q l.d australia ===== there were two heifers and a big black bull in a field and one heifer said to the other one DO YOU THIINK HE WILL CHARGE AND THE OTHER HEIFER/.,LOOKED UP FROM EATING AND SAID '' no I think he does it for nothing '' . #########################################
I think we should all park our patients in Heathrow, fly off and let " them " deal with it.
No, I couldn't.
But its tempting.
Love Jean xx
If you bring your loved one along then you maybe entitled to a discount. Just saying... lol.
Sure I will run away ...but I have to be back by five; thats when I feed B! hahahhaha
AVB
If you are flying round the world in 80 minutes, make sure you fly by and say Hi! It's raining and rather shaky, but will be warmer than UK!
No we will be picking you up on the way, stay safe, thinking of you x
Yeah! Bags packed and passport ready!!!
I'm on that plane with you all ! Big hugs to everyone. Xx
Yvonne
Just reading all the responses to your invite! If I could blank it all out I would be there like a shot. However it's always there isn't it? I went away for 3 nights with my young Granddaughter in August. It felt so unreal. Guilty, wondering what I was doing without him.
I don't know how we can do that and therein lies the problem? Or at least one of them. Nothing we do can do to really help our loved ones? Or at least that's how it feels. Everyone just fobs you off. Social workers are there for what exactly? Has anyone got a good one? There used to be a lovely one at the Hospice but she has gone and the new one isn't sympathetic at all. Apart from the people on here nobody is. A shameful indictment of our countries? Why the hell do doctors and nurses not know about PSP? Why did I never hear of it until my husband got it? I am so bloody ANGRY for all of us and our loved ones. We are being badly let down.
Marie _14
And to think of all the other diseases out there we don't know about! A new disease if you will or a new bent on an old disease teen girls experiencing depression...is on the increase , themore they use the cell phone. I hate to be sexist or stereotypic, but I do believe girls need the power of touch as a mode of communication. We need to talk fact to face to see others expressions to physically touch/slap bob there heads up and down or side to side or see the others eyes roll or hear their squeals or shudders or whtaever. The posit of text gives them only one thing, a bit of communication whenever wherever....but girls need more....and because they are not getting this, they are becoming more depressed. I feel this same way with the doctor patient relationship which has transitioned from any physical contact to merely looking at the tests and assess the needs of the patient.....and a reschedule in 3 months....It may not be so much a depression but just the power of healing through touch that is bieng lost due to the power of and fear of germ sharing. If dr doesn't touch you, he also does not spread your medical maladies to his next patient.....to be fair I guess I cannot blame them....But for me I think i would rather be hugged and die sooner than live in an antiseptic bubble of loneliness.
((Big Sloppy Hugs to you all))
AVB
Peter your joke made me laugh welcome back, and you can come with us. ✈️
Hugs to all.. Itseems to be a crazy time right now for quite a few of us. I blame the supermoon!
I would love to head somewhere hot....
Where would you all like to go? Suggestions please, really looking forward to it, meeting up with all my lovely friends I have never met !!!!!! Yvonne ❤️
Mmmm anywhere hot right now with plenty of sunshine & tranquility. Maybe a little island somewhere in the middle of the ocean.
Oh how I would love that it is not just PSP, but you have also got your own family to deal with, really getting hard xxxxx
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