Oh the pain of this terrible illness that makes the sufferer frustrated and snappy and the carer tired and on a short fuse. I want to sit and weep for us both.
Who else can understand other than the sharers of this site. The unpredictable fall just when you've turned your back, the struggle to get the patient back on their feet, sleepless nights, who in their wildest dreams could think they'd be facing this.
Just having a rant , today's been the pits.
I read all you posts and know so many are in a worse place, I gain inspiration from your posts and I learn a lot . Thank you all
Written by
gypsywoman1947
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All you can do is take one day at a time I think so many of us had bad week last week, try and get some rest easy said than done thinking of you and everyone else with this horrible illness Yvonne xxxxxx
Must be full moon again! S has fallen quite a lot this week, his poor elbow is at least four time the right size.(warfarin!). Ended up going to see an emergency doctor this morning, after, he refused to go upstairs, (living area up steps here in our house in SA!) I had to feed him his breakfast, because his elbow so bad, very confused, yet I'm over reacting, making everything up and panicking! He just sat there laughing at me this morning, while I was despairing! I know it's his way of coping, but how do you cope when someone laughs in your face and you know what you are doing is wrong? I know we should be on the next plane home, but he won't even discuss it, no point in just booking the flights, 'cause I know he won't cooperate if I did. Thankfully elbow not broken, I am just at a lose to know what to do for the best? If we come home, I know he won't forgive me, yet I am struggling to cope, having to do practically everything for him. Spent the whole day, after seeing the doctor, dozing on the sofa, what else is there to do. It's the only time he is safe, when he is asleep!!!
Hello Heady . What a nightmare we are all in , I am sorry to hear of your trials, I too find the laughing over despairing situations hard to cope with. I get angry , I try to walk away from it for a while. It's not easy is it.
V always seems to fall to her left - her arm is black and blue , her elbow painful and our Elk has almost run out of puff . When they demonstrate how to use it and slide sheets it all seems so simple but when V has gone down everything round her ankles at 2.30 am wedged sideways and unable to move or help me move her then it just seems impossible and I end up using brute force and ignore all the so called easy steps . I don't know about the moon but V has certainly been going down more often over the past few days although I also notice that her mobility overall has deteriorated very rapidly in the last week .Sign of things to come ? I have told her she must call me in the night if she needs the commode - she says yes but I can hear "I am not b------y well going to do that " in her voice . What do I do ? I don't know . Sometimes you just feel so helpless and useless . Georgepa
Georgepa when my husband started with the falling and after having to pick him up, then call the Paramedics to help I told him that he could no longer go by himself. His falls were always to the left in the bathroom which made him then hit the tub with his neck and shoulder. Now he weighs 185lbs. not so easy to pick him up, and he too could not do anything to assist me. I told him that if I had to continue to pick him up that not only was he going to get hurt, but me as well and then 'where would he be?' With great reluctance, and me being a b…h about it, he finally gave in. I have caught him many times as he stumbled and almost fell and I suppose he realizes that all in all it is for the best. Good luck!
Georgepa, that's it exactly , it's a stubborn streak isn't it? We would probably be the same. I notice my husband falls 2 or 3 times a day over course of 10 days and then perhaps not again for a week or so. It's as if the illness suddenly has a progressive spurt and then remains stable for a while. I hope you get plenty support. X
You will be surprised how the moon effects everyone GeorgePa. Just wait, in about 25 days time, we will all be complaining again! Unless it's the time it takes us to get all stressed out again, after relieving all our problems here.
You are right about being helpless and useless. There is no easy answer, just plod on, hoping that at least 50% of what you do is OK, can't even hope for right, OK, is the best I can acheive!!!
hi heady this does not sound like you mate\\\\\\\\ c;mon now lets have some of the old heady back again that's not him laughing by the way its the psp when my wife has a bit of a moan I usually laugh I cant help it ==== it must be infuriating for you all but don't fold up mate S needs you to be strong regarding your house in south Africa where did you have most friends yourself in the uk or south Africa
because I would stick with the place that I had most friends
and I mean friends not aqaintences I KNEW I WOULD HAVE TROUBLE WITH THAT WORD MATE BUT I WOULD GO WHERE MY FRIENDS ARE IF ITS WHERE YOU ARE FINE BUT IF NOT REGARDLESS OF WHAT S SAYS I WOULD GO WHERE I FEEL COMFORTABLE FOR YOURSELF MATE THATS WHAT YOU HAVE GOT TO THINK OF NOW MATE REGARDS TO S MATE TELL HIM HE HAS A RIVALL IN AUSTRALIA CAUSE MY ELBOWS ARE A MESS I HAD TWO FALLS YESTERDAY AND THE DAY BEFORE AND THE DAY BEFORE THAT I HAD BETTER STOP THERE SOUND LIKE A BROKEN RECORD WELL HEADY TAKE CARE OF YOURSELF WONT YOU SEE YER MATEY PETER JONES QUEENSLAND AUSTRALIA PSP AND LAUGHTER MAN
Thanks Peter! I do know it's the PSP that's laughing at me. In one way that makes it worse, at least I can shout and scream at S, PSP, has no ears! Or none that it's letting on about! Are you able to explain this laughter to me? I'm sure it's because S just isn't able to express anything, that he starts this horrible laugh. I asked if he was laughing to stop himself crying, his reply was "why would I be crying?" It's quite soul distroying, when you have worked yourself to the bone, frightened stupid about his never ending injuries (on top of everything else!) running out of dry sheets, clothes etc., just for someone to laugh, when things get on top of you!!! I hope you don't mind me asking this, but I need help, S just can't explain himself anymore. Can't even use the computer to express himself, writing went out the window years ago! It's so hard for him and I'm not helping, because I don't understand!
We have got family here in SA, they are all coming for lunch today. So I have got to pull myself together and get on with life again. Thanks for your help and support!
heady did you get my last em to you about laughter matey I do not want to write it twice if I can help it hope everything is going well for you in SA now mate and S has settled down a bit mate take care matey look after yourself because your the one that counts now mate life goes on regardless if you know what I mean !!!!!!!!!!!! peter jones queensland Australia psp bloke
Thanks Peter, I did read your previous email. I know what you mean about looking after myself. I DO try!!!
Thank you for your explanation and understanding. I was reading an an old blog earlier, where you were saying that you sometimes feel a burden on your wife, I'm sure that goes with the terrority, but on behalf of everyone here, especially me, your insight on this terrible disease, helps enormously. I really don't think I would understand half what is going on, if it wasn't for you!
Your perseverance and constant fight with your computer, is helping a great deal of people. I know life isn't easy for you, but your effort is easing life for others.
I did read somewhere that some PSP sufferer sometimes laugh when they mean to cry and cry when they mean to laugh. Maybe that is what hubby does, Peter Jones mentions this as well, together with some very sound advice about friends.
Take care, I hope the journey back to the UK is uneventful.
hi gypsywoman1947 that was a good year mate was that your date of birth well mate I think your em covers it all so I will say no more except take care look after yourself peter jones queensland Australia psp sufferer
Hello Peter I often read your supportive posts on here , I think it's amazing how you contribute whilst being a sufferer. I hope you get plenty of support as you travel this bumpy road. X
HI GYPSY WOMAN 1947 I GET ENOUGH SUPPORT THANKS MATE TO KEEP ME GOING AND YOU ARE RIGHT IT IS A VERY BUMPY ROAD BUT I HAVE IT SO THERE IS NO GOING BACK SO MUST MAKE THE BEST OF EACH DAY THANKS FOR YOUR EM MATE SEE YER TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
My husband also laughs when I am upset and he says to me when I ask him why is he laughing when I am crying and he says I am crying inside. Safe journey home Heady when you do return and for S elbows to right themselves soon, and you take it easy, and try and get some rest, I now it is easy said than done, thinking of you all Yvonne xxxxx
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