The last four weeks have been just brilliant, I have been chief bottle washer, sort of domestic goddess and Miss Speedy whilst walking the dog. As per physio instructions have been walking at pace every day and had cut down my time into town with Lottie Bots to 30 minutes as opposed to at least three quarters of an hour. Poor ole Lot Bots has been exhausted every day with her little legs being trotted at pace across the park, and her little flappy years being assaulted with "Come on Lotbots, I ain't got all day," well this morning the tables are turned.
Lotbots is now once again waiting for her Mum! My thirty minute bracing walk has become a slow and painful one and a quarter hours. For 4 weeks I have been free of a syringe driver, but today I just about breathe with it. I am exhausted, what should have taken me a maximum of 2 hours today has taken all morning because I have stopped so many times until I can manage the pain.
I should be angry and upset that my treatment at the Royal Brompton has only lasted 4 weeks, but I am not it has been a pleasure to feel so well, and I am really glad that I made the most of feeling so well. Back to a slower pace now for the time being sure Lottie will be pleased that she can spend more time cuddling her Mum on the sofa.
Hugs to everyone Daxiemad xxxxxx
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Daxiemad
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Oh dear, so sorry your spell of being well seems to have come to an end. Hopefully tomorrow will be a better day. It must have been nice to feel "normal" for a while. I like your philosophy
not to be angry but to take pleasure in the respite you got! well done. Hope you have a better chirstmas!
It really does hit hard when you have had a good spell. Hope this is just a blip for you and you improve and get that 'well' feeling back again. Enjoy your cuddles.
Thanks Guys, would love to say this is a little blip, but for a while I have see a slow decline, and for a Brittle Asthmatic quite normal. But despite it all I am still smiling as I still have my lovely doggy Lotbots to cuddle!
Might be a little blip - hopefully daxiemade. I think sometimes the run up to Christmas can pull you down, I am definitely not recharging my batteries at the moment Gordon, feeling a bit yuk.
Lib x
Very moved by this, I could see you Daxiemad with Lottie in the park. However have the best Christmas, as much as possible under the circs. Love Annie80.
Hope you feel better soon Daxi and hot to trot with Lottie Bots! Have a good Christmas. xxxx
I wish my husband would get off his backside and do something. He never exercises (I can't he says) he does absolutely nothing. Gets up in the morning with my help, goes downstairs with me carrying everything. Sits down for the rest of the day, get me this and get me that then goes back to bed with me carrying everything, water, tablets, oxygen, nebuliser. He is literally wasting away, his muscles have gone I have to do everything for him. He is making himself worse, the physio told him, use it or lose it so he is losing it. I sometimes wish it was all over as living with him is a living hell, there is no love left as all he thinks about is himself. The physio told him whilst he is using oxygen his body parts are protected so there is no reason to worry about getting out of breath, breathlessness is making his lungs work and as long as he is using the oxygen he can push himself, it will be uncomfortable, but he is making things harder for himself as his legs are wasted and cannot hold him up properly. He has GOT to exercise.
I just do not like being with him anymore and it takes me all my time to want to talk to him, I now begrudge everything I have to do for him. If he would try, things would be different, but he won't. If anyone rings him he says I am fine, when anyone comes to see him he is the life and soul of the party, then when they go it is back to get me this and get me that.
I was changing his oxygen the other day (he won't do it) and he started telling me how to do it, I don't know why because he has not got a clue as he has never changed one. I picked up the empty cylinder and I could have hit him over the head with it I am so fed up of him.
Even our children are fed up with him and have no sympathy because he won't do anything. I think he is lazy and likes being waited on hand and foot. He won't even walk a couple of yards to get something, i.e. a book or CD, he calls me.
I have started spending time in our front room now as I cannot bear to be in the same room as him as all he talks about is his phlegm and the gunk on his throat. He never, ever covers his mouth when coughing he says he can't. He said to me the other day, how long did I think he had left to live, I told him if he didn't change his ways, not long as I would cut his bloo##y throat, that would make breathing easier for him.
Anyhow, have a lovely Christmas, we are on our own this year as our children have made other arrangements, I have cooked Christmas dinner for nearly 50 years for them and now, the first Christmas I don't, we are on our own. Lovely isn't it.
I think I may just go to bed for the day and pretend I am ill so I can have a rest.
Best wishesxxxxxxxx
in reply to
Can you speak to someone about respite care - docs or social services - so you get a break, regularly - as I think you seem to be deperately needing that. You need to take some positive action, rather than just understandably negative ones that don't help you much and don't move you to a better place. My Mum went into a care home every 3 or 4 months to give my sister a rest - made all the difference to both of them. You can get some of your life back this way and teach your husband that you will NOT look after him all the time - he may appreciate home with you more than he does. Also his doc may be able to provide counselling for your huband to confront and deal with his fear, anger, and all that is behind his bad behaviour. sometimes some meds can make people behave worse too. At the end of the day, you are not required to give up your life (or freedom from prison to get your own life. You can separate from him. Call the BLF Helpline who may be able to help. x Take care
I PROMISE I'll come and visit you when you are in prison sweetthing! What a total b*****d, think you should have put this on your own blog - people need to see it, go on, copy and paste onto a blog.
Might have more sympathy for him but for the fact he is sweetness and light when others are there. You are a saint - stop letting him do this to you.
Thank you so very much, the Matron came today and I told her everything, thread through the needle, I told her how fed up I am and don't know just how much more I can take from him. I also said I had not been out since January 2012 apart from one time for 2 hours and going to his hospital appointment.. She has told him in no uncertain terms, that he has a very much higher than average anxiety level, and she is going to get someone to come and talk to him about his anxieties.
She asked him just what it was he was frightened of being left alone for, he said that when he was in hospital he nearly died because he could not breathe, she told him that was because he had had a bronchoscopy and a plug of mucus had got stuck in his throat.
She said he was now on antibiotics, nebuliser, oxygen and all his tablets and there was no reason whatsoever that it would happen again. She also told him that when I went out and if he felt unsure he had to sit down and read a paper, magazine or watch the television until I got back. She said you have both got mobile 'phones so there is nothing to worry about, so he told her that if he had a 'do' I would not get back in time, so she said, don't ring your wife ring the Ambulance so he said I can't because I wouldn't be able to breathe. She told him he was making excuse after excuse and to stop worrying so much. She also told him that this illness effects both of us and because I am his carer I need time on my own to be able to cope with the demands of caring, she said that if I couldn't get out because of his worries then he needs to go into respite every so often to give me a break.
When we went to the hospital to see about his oxygen tests, the nurse told him that he had to exercise, if he is on his oxygen all his organs are protected and a little bit of breathlessness will be uncomfortable but not life threatening and the more he did the better he would get and his muscles would start to build back up again.
Well he has been told, our son came today and I told him exactly what had been said and he agrees with me, so after Christmas I am starting to have time to myself and going out.
Good for you. Exactly what you need. You must take care of yourself and have some time for yourself.
Yes after the New Year I am going to get my life back, if he doesn't like it he can lump it.
I have had to stop letting our grandchildren stay over as he says if he is taken ill I can't look after him, as my time will be taken up with them. They are 15 months, 3 years and 7 years of age.
Today my daughter-in-law asked me if the youngest could stay over on Boxing Day night and they would pick him up the day after. I said yes but my husband went mad, he said no he can't, it is absolutely stupid, what if anything happens to me and you have to ring for an ambulance. I told him I would ring for an ambulance then ring my son and daughter-in-law and they could pick the baby up.
What about me he said, who's going to carry my oxygen and nebuliser and tablets upstairs, I told him there is no problem I have a baby gate, the little one will be in bed and I will see to you. What about tomorrow morning, he said, I will need help getting up, I told him he will have to stay in bed until I get the little one sorted out then I will get him up,
To be honest, it is like having a baby in the house as he is so needy. I make him his meals, he has them on his knee, then leaves the tray for me to put away. If I get up to go to the toilet it is 'where are you going', if I go into the kitchen 'what are you doing'. He is driving me absolutely mad.
When our last German Shepherd died two years ago, I told him no more, I was 68 years old and didn't feel as though I could be bothered with the early morning and late evening walks as well as during the day, as I was child-minding our grandson and granddaughter whilst their mums and dads went to work. But no, he called me a selfish bit## and went out and got a puppy. I love him to bits, he is a massive long haired German Shepherd, but now I am 70 and having to look after my husband as well it is too much. He does nothing for the dog, can't take him for walks and won't even feed him as 'I don't feel well'. I told him (my husband) the other day, that he is a waste of space and air, and for all the good he is he may as well be dead.
As you can tell, it is a miserable existence, sometimes I don't know how I keep my fingers off his neck.
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to get your own life. You can separate from him. Call the BLF Helpline who may be able to help. x Take care
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