As some of you know I had a really bad day on Friday. Nothing really happened, just a small thing that broke the camel's back!
We went away for the weekend, was planned. Nearly didn't go! Went to the Lake District in England. About 4hours drive from where we live. Took 6, loads of traffic works! spent all Sunday driving around. Then the 6 hour drive back yesterday. So spent 18 hours behind the wheel!
I can tell you, it was worth every minute. For 18 precious hours, I did not have to worry about S. No falls, no unrealistic demands, toilet breaks were carefully managed, only had to resort to the bottle once. It was just S, me and the car! S thoroughly enjoyed it, as he was doing something "normal" that didn't take any effort, all he had to do, was look at the beautiful scenery. He grew up here, so we visited a few old haunts down memory lane. Lots of good boxes were ticked!!!
Yes, I am exhausted today, but a pleasant tiredness, not the overwhelming feeling of Friday!
What I want to know is what the rest of you do to relive this awful pressure we all suffer from time to time?
Lots of love
Heady
Ps. Car didn't have quite such a good time, brick wall jumped out at me, while reversing. Still has giving S something to dine out on for ages!!!
Written by
Heady
To view profiles and participate in discussions please or .
Gardening, play my ukulele with friends here at home, watercolour painting ( not much time for that lately), wine appreciation group once a month, unofficially known as " The boozy women's natter group", darts once a month at local pub and C comes too. I say darts but as Kathleen was called for her turn while laughing at something with me, she said, "Why do you keep interrupting our conversation to throw darts at a board?". My hubby and I also enjoy a hug. It's more like me holding him up while he clings to me. I aways end up with a very wet shoulder but it's nice to have that close physical contact.
We've just come back from a week in Suffolk. I dread the M25 but am not on it for long. It took 3 hours both ways. With packing for a week, loading the car, checking tyres, water etc and then all the washing now I did wonder if it was worth it but we also had a great time and when I asked C if he had enjoyed it, both thumbs went up.
I hope the car wasn't too damaged and the wall is still standing.
Oh! If it's the evening when I need destressing, a glass of wine and bar of chocolate usually does the trick.
hi nanna b hows it going mate sounds ok to me it was better to hold c up for a hug and get wet than have him 3
sheets in the wind and hold him up wasn't it nanna I think c is a bit of a character mate all these crafty hugs he gets I done a silly thing yesterday I went out on my own down to the supermarket I never took the phone
with me to get some shopping this was at 9 --20 am
so after i done the shopping I thought I would have a haircut so I sat down and waited for my turn then I had it and went home not realisin g the time by now it was 11==50 am I just go to the door when my wife came out like a bat out of hell and she got stuck into me i9 was standing there like an idiot while she wore herself out abusing me saying I was selfish and did not understand anything '\ which it does take me a little longer for it to sink in these days \\\ I was speechless which was no surprise to me\\\ she thought I had been run over or had a accident or lost my way something terrible had happened to me so everyone that can walk or try and walk don tg go out without your moblie phone and remember to phone home so she or they know where you are and it was inconsiderate of me I just thought that time was my own but its all ok now not forgotten but ok with that off of my conscience I will wish mr c a very good night and mrs nanna sleep well oh yourf day is just starting isn't it mate see yer take care peter jones qiueensland Australia alias \\\puyella yuk what have I done with a name like that
Hi Puyella, I wondered who was talking to me. Sounded familiar calling me mate but didn't recognise the name. Any significance? Mine is what my grandchildren call me...pretty obvious really. It is good you can still get out by yourself but your poor wife must be worn ragged with worry. I'm afraid I let rip on C many times when he could walk especially when he went through 2 panes of glass in the greenhouse and another time I found him clinging to the side of the pond having fallen in backwards. I stopped colouring my hair as I was doing it every 4 weeks and am quite grey now. Proverbs 16 v 31 says, Grey hair is a crown of splendour, the sign of a righteous life so I don't need to colour it. ( Not sure if I've lead a righteous life but if the bible is correct, I wouldn't be grey if I hadn't).
Hope you slept well last night. Our day is good so far and for September it is very hot, 25 c at the moment. ( OK that's probably cold to you but getting too hot for me).
Behave Peter Jones and don't forget that phone next time.
I never realized how special a hug could feel. Mike and I have been married for forty three years come this November. I think up until this horrible disease we both took a lot of things for granted. We don't now. We tell each other so often now how much we love each other. Yes, we both already know we love each other but it just reinforces it now. Take care.
now heady that brick wall never really jumped out at you did it mate
im glad that s had a very good day and yourself of course a lovely country drive that's great for taking the old tempers down isn't it matey see yer peter jones puyella
Peter, I know what you are thinking "typical Sheila!" The wall was definitely NOT there, when I checked all my mirrors before reversing. The bleeper didn't go mad either, do what conclusion can a girl come too?!!!
I'm afraid I will have to side with your poor wife. Fancy frightening her like that! Least you still can, S can't go out anymore on his own. Had to give up driving a couple of years ago now, even before we knew about PSP. But yes, I got the same tee-shirt as your wife. Why can't you men, just learn to say you will be a couple of hours longer than you think you are going to be. Gives you a bit of leeway to do your own thing and nobody worries till much later!!! Of course, if you do get lost or what ever, nobody will know. Your choice!!!!
Shame you live so far away, I think I would come and take your wife for a much needed drive in the country!!! (Hope you did!!!)
A few deep breaths as im reaching for the wine and cigarettes. (Wish i liked chocolate) do a lot of knitting and reading. Seeing and talking with friends.
It must be something to do with being at the start of the journey (4/6 years). Think it might be different if Brian was getting up and falling over all the time or doing things that would put him or me in danger.
I do count my blessings that he is quite happy to sit and watch tv and the only time he gets out of his chair is when I am with him to assist him. Janex
Hi Jane glad I not the only one that reaches for the wine and cigarettes. Since Jim came out of hospital he seems to have one problem after another. He is still not confident at walking and yesterday whilst trying to put him in his stair lift his legs gave way and we both ended up on the floor. Eventually I got him into bed and the next thing for me was a large glass of wine. It works wonders. Denise x
I always tell newcomers to buy shares in a tissue company. After reading all your replies, perhaps it should be the local winery. I too, reach for the wine!
Cheers to you JGC. Strange start to today. The night carer said she was worried about my husband as he hadn't passes urine all night ( usually about 600 mls). Thumbs down when I asked him if he wanted to go and was uncomfortable. The bed was dry so I checked the convene. It was still on but urine was in the tube from the convene to the top of the bag so I knew he had passed more. I put my Miss Marple hat on and investigated. On my knees I swept my hand under his bed across the parquet floor and out came a stream of water. The bag was locked and there was no water under the bag. The night carer said the bag must have leaked. Since she left I filled it up and it has been hanging for half an hour with no leaks. Miss Marples surmises that she left the lock undone ( I've done it myself so wouldn't be cross) cleared up the urine from the floor as best she could but didn't reach far enough under the bed. I do love solving these little mysteries but I do wonder why she didn't admit to leaving it unlocked. She knows I'd be more likely to laugh over it than be cross and I was just relieved my dear hubby didn't have more problems.
So glad you were able to plan and get out. Mike and I are hoping to have a weekend away to attend a DOUBLE birthday party for two of our grandchildren. The drive is only two hours away but we plan on spending the night at a hotel and taking our time coming home on Sunday. It seems since we were diagnosed in June 2014 we spend almost all of our time seeing different Neurologist with different specialties . I finally had to buy an appointment book to keep myself straight. We had an appointment with a Neuro Opthamologist yesterday in the pouring rain. I do all the driving. I managed to go through a red light. Scared the JESUS out of Mike. I apologized and we both had a good laugh. Today we go to a low vision Neurologist. Tuesday we go to a sleep Neurologist. The list just goes on and on. It's 2am right now and I am up and about to work on making jewelry for a resale shop where I volunteer. I use to go in and volunteer all day on Tuesdays. Since Mike was diagnosed I only go in for about two hours. I work on the jewlery as much as I can here at home. I love to garden (I am a retired Florist) . I always wondered why GOD created dust and weeds well, now that concern has been answered, it's for poor folks like us so we can unleash stress and frustrations. I laughed when I read about your car accident. We just took my car in for bumps and bruses too. I had a confrontation with my electric garage door and the electric hatch on my car. The garage door won!! Sorry to go on for ever. I thank God I found this sight, I check it every day. All of the patients and caretakers have so much insight for NEWBIES like my self. I know MIke and I have just started this horrible journey but it helps to know there are some real people out there that I can read, listen and learn from. Take care.
S got his diagnoses Sept 2013, so not that far in front of you. We spent all last summer, going to loads of different people! Unfortunately, none of them had the magic wand. Yes, PSP has a very steep learning curve, but don't worry, again, unfortunately, you will be fast tracked up it!
It's not just our cars and husbands that will get bruises from PSP, we will as well. So take care of yourself as well as them! Not easy, if fact I'm finding that bit, the hardest at the moment. No doubt, I will learn to ask for help. So, the fact that this IS still new for you and everyone asking how they can help. ACCEPT all the services offered NOW!!!!
Hi Everyone, just read all the replies about stress. You are all such incredible people. I have saved this page so I can read and have a chuckle everyday.
I smash up cardboard boxes for recycling.Vicious weeding,resort to adolescent language(when I am on my own)I just had to dial 999 as D had fallen with his arm underneath him and so normal way of getting up wasn't possible.No lasting damage just grazes and bruises,the paramedics were very kind but not familiar with PSP Well now we have made 2 of them aware of it.Glad you can enjoy trips even if tiring,D is always anxious to get home and doesn't look up enough for scenery but he would have enjoyed a brick wall incident!Keep going and tell yourself "well done" Love p
Apart from a good friend or two who understood if I just needed to talk, I found tearing up paper (such as envelopes) got rid of some of the stress. And there's always housework ...
Luckily I could lose myself in a knitting pattern - not too complicated in case I had to leave it half-done, of course. Didn't go in for knocking down walls, though, that's a bit drastic. Learning bricklaying could be a new skill for you.
Ha! Ha! Ha! Keep telling everyone, it was the wall's fault. Even the nice man at the garage today, said, there are so many of these walls, that jump out at people's cars, something should be done about them. So there is no way I am going to be part building more of the little B's! (Or big ones in my case!)
Heady, we are going to downsize and sell our house. I have been looking by myself before taking my husband. Parked on a street in a tight space. Did not even know I'd been hit until the next day. My husband kept trying to tell me but I did not understand. Said something about PSP. When I finally realized I'd been hit I figured out he was making a joke about my having PSP because he used to come home with unidentified dings and dents before he stopped driving!
Maddys I get the same joy when I take my empty wine bottles to the bottle bank. I do launch them thru the hole with vigor that bang crash does make me smile. Janexx
best stress relief (besides a hot bath & vino), I put on my boxing gloves and punch the bag-gets it all out. Kickbox as well. And retail therapy. Never underestimate the power of shopping even if it's only for groceries. A good long walk on the hiking trails w/ my dogs also works wonders. And seeing what everyone's up to on this site-always makes me feel better. Especially Peter Jones, he always puts a smile on my face
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What do you ask the Neurologist?
How do you get into clinical trials?
How do you cope with dreams and hallucinations?
