Good luck Angelina glad you have decided what to do,if your sil says anything you tell her straight,she would not be able to walk a mile in your shoes. until you are going through this thing,no one has any understanding how it is.Can I say now you have decided to do this,make sure you put something in your boxes that has John smell on it,sounds odd I know,but i think thats what you miss most of all,its one of the senses that you do not miss until its gone.[does that make sense]
Debs good luck with your sct.
love and kind thoughts to you eve
Hi MaRi
I just cannot imagine it,London to Brighton,56 miles is it,with that great big hill you have to ride up,it gives us so much hope.he must be fit.
Thank you for your post,my husband is on his 5th cycle of ctd and had complications with pneumonia,some times I just cannot see any progress,and then some one posts with such good news and its wonderful,gives you that hope back again.thank you eve
Hi Keith
I think we were all wondering what happened to you,but to scared to ask,as we new you were going through a bad time,but its lovely to here you are doing well.
Have a good break away from it all,wish i could do the same [I am jealous ] Best Wishers Eve
Hi Ladies
The worst thing that was ever said to me concerned my first grandchild who has cp.I was walking him,and met a male friend who new my daughter,and was explaining why Matty was in a wheelchair.
He asked if my daughter Ruth was going to keep him!!!!!!!I often feel like coming out with comments{no hes going out with the rubbish] just to see the look on there faces LOL.
As he has grown older it is harder because he is a very bright child,although his body has little movement,its a bit like being in a zoo,only he is the animal that people look at,[ not very nice]
The worst one for my daughter was at Pembury Hospital,A nurse was going to give Matty some medicine,My daughter as usual questioned what was being given,and the stupid nurse right in front of Matty,told my daughter if he did not have it he could die!!!!
Slims little blip was on the way to ITU,a young doctor said,we are taking you to ITU,I cannot promise you,you won,t die !!!!,he didn,t even ask,!!!
I can laugh now but at the time,it doesn,t seem funny, love eve
Hi Min
So sorry to hear peter,s not doing to well,but we both know how quickly it can turn round,a few days on a drip works wonders,Slim had a feed in his neck with lots of tubes to be able to have lots of drips,with machine,s going off every five minutes,not nice at all,It must be awful having to go home and leave him there.
I hope today things start turning round,the key seems to be catch it early,you have been here before is it less frightening,or just that you know it,s something that happens and you have no control over it,and it becomes part of the course?
We go home to empty house,exhausted by the strain of everything,with so much to do,feeling you should make good use of this free time,to clean wash the dishers or iron.!!!I sit and ponder all the things,we had plans to do,and wonder will we ever get are lives back,
How is your kitchen coming along,all planned and ready to start!!!!
This is what will keep you going,plan for that future.keep in touch
love eve
Hi Roz
I feel like a naughty school girl,the first time i thought what an earth have I said,because I do not swear normally,I was upset by the whole thing,and thought,have i offended someone.
The second one ,was saying H-e-l-l.Tom told me how to get round it,but you have to question ,who would find it offensive
Glad you seem more upbeat Roz,think good thought,eve
Hi Everybody
Slim was changed to Oxycontin in hospital,when we asked why,told it was better because it worked longer up to 12 hours,I think they said it was opium based,morphine mst worked faster,but the body gets use to the drug and becomes less effective leading to higher doses.
As for Tramadol Slim was taken off them again by hospital as the were not suitable with some of the tablets he was taking
Oxycontin,works well for the amount he does,but if he was doing things more physical he would have to up the dose.
When he was rushed into hospital,The morphine mst did not touch him when asked pain level said 9,its amazing how much of that stuff he had,just to control pain,which it does for short period,.
hope this is some help eve
Thank you Dai
Dai you are in the right,It does get me down,today was another hospital day,believe it or not we were only in there for one hour miracles do happen.
I think you are right care,s do get overwhelmed,many cannot express them selves,i must admit my spelling has got much better since I have been posting,but my grammar needs improvement.
So you keep it up Dai,were would we be if people like you,were not on this sight,I would miss your songs,miss toms laughter,mins sound advice,and bridgets,common sense,jo little comments I could go on,there just an example.but i do wonder about people who come on this sight,then leave without so much as an explanation!!!
love from an institutionalised carer 😛
Hi Roz
You hav not heard from me before,so when you posted again I thought if I replied you might think{who is eve]:-)
I came on this sight in February husband has mm.but do not think you are forgotten I read all your posting because i had to know what the future held,I have thought many times how you were getting on,so many people come on this sight then vanish and we never no the out come,and thats sad.
Roz i think we need you to post,so we can see how you are managing to pick up your life,Michael would want that,We all know the first year is the hardest,so you keep posting,good and bad times. eve
Hi Wendy
Sorry to here you are in hospital,Raging diarrhoea not nice,but you are in the right place,if it was a infection they would most probably not like to have admitted you! fluids is the big one with diarrhoea,and being an impatient any test will be done earlier.It must be very hard to cope with living on your own,
Hope your well soon love eve
Hi Gill
Hope Stephen picks up soon,think about a good holiday in France when this over,that must take some of the pain away.When we go to Dover and watch the motor homes going on the ferries,I have pangs of jealousy knowing it is going to be some time before we manage France.
wishing you well Eve
Hi Angelina
I would not know how to advise you,but just had to let you know,my thoughts are with you,I think I would cling on to the fact he would not sign that form,I can see why it is important,to get your life in order,I can remember when Slim was in ITU i left him sleeping,came back 4 hours later he was so upset,he thought because i did not tell him I was going,I had given up on him.Something i would never do.
John needs to believe he is going to get better.a nurse once told me if a patient wants to know anything they will ask,and I believe that to be true.So in my case,no matter what I think or believe does not matter.
My thoughts are with you,and I hope John gets over this bad time
love and best wishers to you Eve
Hi Bridget
Slims on Oxycontin 30m twice a day morning and evening,also liquid Oxycontin allowed as needed,but if he starts using it all the time doctor will up the pills.but not needed at the moment.
As you know Bridget Slims had a bit of a rough time and can take a lot of pain,the Oxcontin was given in hospital as before Slim was on morphine,but the Oxcontin is a slow release drug has to be taken over a period to have an effect,liquid is for top up.It has worked for Slim.He cannot do much ,walks on sticks for short distance,then wheelchair.also standing causes pain in back,but he can now sleep through the night,and generally he feels better.but I do not think,he could of got much worst pain wise.
Hope this is some help to you Bridget love Eve
Must tell you what happened on Friday
We went to bank to sought out accounts now we are married.Slim on sticks,after five minutes had to sit down further down the bank.Started to remove stickers from his walking sticks,when the man next to him told him to stop doing that,as they had to go back to hospital,Slim told him he would be keeping them,the man said he had been standing there for five minutes and did not need his sticks,Slim reply was what has it got to do with you,when he rounded off on Slim,"I am a tax payer people like you run this country down" I missed all this,and he did not tell me till i got outside the bank.
I can laugh now but by god did my blood pressure go up,he would not let me go back,mind you if i did I would have lost the plot.
Slims worked hard all his life,and served his country for 22 years never claimed a penny he,s not entitled to care allowance and this stupid man thought he had the right to have a go at a man who couldn,t defend himselve and no bank employ stepped in,makes you think what the worlds coming to.LOL
best wishes Eve
Hi Min
He will not let me stick anything up his bottom LOL he must be getting better his dignity is coming back,!!!!;-)
Seriously Min its a bit of a fight with Slim,he takes so much,just does not want to try any more,looks if its starting to work,should do drinks it out of bottle>:-(
As for weight gained some then had v&d and lost it.Sorry cannot help you with Peters problems,it couldn,t be reflux? Slim takes tablets for that and suffers from hiccups all the time,hurt his ribs so much he thought he had broken them,but that turned out to be pneumonia ,Keep well min,best wishers eve
Hi Pat and Jane
Min and jo ,s advice is good,just want to add it is important to drink a lot of fluid as you need to clear kidneys,to be honest your mum seems to be doing ever so well,it must be hard living on her own,if i am correct the nurse on this site can put your mum in touch with some one with same condition,ask Ellain ?
Might be worth going to an Info day look on dates to see if any are were you live.Keep in touch, eve
