Great news, urine sample today came back all clear and a lovely warm sunny day to boot. Mum put the washing out, filled the bird feeders and planted up some seedlings while dad fixed the cloakroom tap and garden gate. There is one thing about my dad, he is an excellent engineer in metal and wood work. The gate post will still be standing long after the house falls down.
Looking forward to my mate coming tonight with a day out tomorrow. The last time I went to webbs I dismantled a tin biscuit display so best not go there.
I was diagnosed with MND in September 2008. Life expectancy is 3-5 years but half succumb to the disease within 14 months of being diagnosed. The disease slowly destroys muscles needed to walk, talk and eventually breathe. I'm still breathing.
Friday, 23 March 2012
Thursday, 22 March 2012
Happy birthday Edith
With each infection and each choking moment I wonder how much more my poor body can take, but it fights on so I must still have a purpose here, what that might be is anyone's guess. A somber start following a down the wrong tube, on my own saliva moment. It brings tears to your eyes and is a horrible feeling. You will all have experienced it at some time when something went down the wrong way.
My poor mate sue r has a blood clot in her calf, not a good thing at all.
Josie been this morning and did quite a few jobs for me which was very good of her. Steve popped in and we hit him with quite a long shopping list.
Best news is that the antibiotics finished yesterday. To celebrate, sue, edith, penny and I went to the cinema to watch the most exotic marigold hotel. We were the youngest there by a long way but still enjoyed the film very much.
I have treated myself to a quality duck down duvet and a memory foam v pillow seeing as I spend most of my time in bed, it may as well be in some luxury.
My poor mate sue r has a blood clot in her calf, not a good thing at all.
Josie been this morning and did quite a few jobs for me which was very good of her. Steve popped in and we hit him with quite a long shopping list.
Best news is that the antibiotics finished yesterday. To celebrate, sue, edith, penny and I went to the cinema to watch the most exotic marigold hotel. We were the youngest there by a long way but still enjoyed the film very much.
I have treated myself to a quality duck down duvet and a memory foam v pillow seeing as I spend most of my time in bed, it may as well be in some luxury.
Monday, 19 March 2012
Penny
Let me introduce you properly to my live in carer, Panchali. She is younger than me by at least eleven years, maybe more but birthdays and birth certificates are not the definitive article in India. Penny was educated in Christian schools in India but is a devout Hindu. This is a good time to tell you about Trump, a black cat that visits daily. Penny saw the cat trying to get Ellie's biscuits through the cage of the rabbit run. Sue gave him some biscuits which he ate very quickly and was clearly hungry. Penny feels that Trump is reborn and is someone she knew in a previous life and owes him something, so has bought Trump his very own bag of cat biscuits.
Penny has a wicked sense of humour which I love. Today's gem was, what does douchbag mean? I've no idea, wash bag maybe? Look it up says penny so I did. Oh my goodness I can't repeat this, where on earth did you hear such language? (I'm not repeating it here you will have to look it up if at all interested).
Penny is also a great cook and just knows flavours and spices that mix so well together. I would have been in seventh heaven eating all that Indian food.
There is no doubt that Penny is well educated. She is now studying for her nvq level three.
Penny is a private person but when you can get her talking it is fascinating what she has to say. For example the difference in up bringing and the family honour to do exceptionally well at all of the studies. My mum did well to just encourage me to attend school. That pressure was not on me, nor was it for my school friends.
Penny genuinely cares and looks after me with my best interests only at heart. I will normally go along with it all and only occasionally put my foot down, like the go to sleep now, no way England are playing football. She was obviously right though because I missed all of the second half.
The district nurses have to be on the ball when they come here because Penny will chase them with anything to do with my care.
Penny has a wicked sense of humour which I love. Today's gem was, what does douchbag mean? I've no idea, wash bag maybe? Look it up says penny so I did. Oh my goodness I can't repeat this, where on earth did you hear such language? (I'm not repeating it here you will have to look it up if at all interested).
Penny is also a great cook and just knows flavours and spices that mix so well together. I would have been in seventh heaven eating all that Indian food.
There is no doubt that Penny is well educated. She is now studying for her nvq level three.
Penny is a private person but when you can get her talking it is fascinating what she has to say. For example the difference in up bringing and the family honour to do exceptionally well at all of the studies. My mum did well to just encourage me to attend school. That pressure was not on me, nor was it for my school friends.
Penny genuinely cares and looks after me with my best interests only at heart. I will normally go along with it all and only occasionally put my foot down, like the go to sleep now, no way England are playing football. She was obviously right though because I missed all of the second half.
The district nurses have to be on the ball when they come here because Penny will chase them with anything to do with my care.
Friday, 16 March 2012
Racing at Cheltenham
I went to the races with Edith,Penny and Sue. We had a bet on the two forty and three twenty. No one won anything in the first race but the second was very exciting and my horse came in first so I won the money. It was very exciting and great to all be involved. Fair enough it happened in my bedroom on the tv. We have decided that with a fair wind we will go to Worcester race course on the 9th June for a ladies day in aid of st Richards hospice. Lesley will come and we will take a picnic with us.
Mothers day here this afternoon. I have got some very nice things in for mum and dad to have lunch and afternoon tea.
Lesley told us about a very interesting challenge run by a cure malaria charity in May. To live on five pounds for five days. So everything you drink and eat for a pound a day. Also, in July there is the st Richards midnight walk. I'm hoping to rope in jill, belinda, sue and sue and others to do it and keep Lesley company.
Antibiotics making me feel really rank today but backache much improved so not complaining.
Penny negotiated the t junction between the kitchen and the utility a little fast so we crashed on entry of the wet room. My commode chair has developed a shopping trolley front wheel so that doesn't help with the steering. Penny doesn't drive and I think the world is a safe place because of it. Each morning penny armed with the impulse spray attacks me and thoroughly enjoys my agony of the cold spray on my warm back.
Mothers day here this afternoon. I have got some very nice things in for mum and dad to have lunch and afternoon tea.
Lesley told us about a very interesting challenge run by a cure malaria charity in May. To live on five pounds for five days. So everything you drink and eat for a pound a day. Also, in July there is the st Richards midnight walk. I'm hoping to rope in jill, belinda, sue and sue and others to do it and keep Lesley company.
Antibiotics making me feel really rank today but backache much improved so not complaining.
Penny negotiated the t junction between the kitchen and the utility a little fast so we crashed on entry of the wet room. My commode chair has developed a shopping trolley front wheel so that doesn't help with the steering. Penny doesn't drive and I think the world is a safe place because of it. Each morning penny armed with the impulse spray attacks me and thoroughly enjoys my agony of the cold spray on my warm back.
Wednesday, 14 March 2012
Hospice day
I am making the effort and I will get up and go to hospice today, it has been too long. I have a dentist appointment late afternoon as one of my fillings has unhelpfully started to fall out leaving a little hole. Doesn't hurt but best to get it seen to sooner rather than later. As my nan would say a stitch in time saves nine.
Angeline came yesterday. I posed pennys question to her to see how she would fair. I think I have said before, penny comes out with random words to play with to make showering a bit more interesting. Yesterday's was name a ship beginning with T. Easy, tanker, no. Oh er trawler, nope, and angelines attempt, and a good answer, titanic, nope. The answer being sought, a tug. That's not a ship it's a boat. Lol always a giggle.
Right best shake a leg.
I went to hospice and enjoyed seeing familiar faces.
My tooth was successfully filled and a severe amout of money extracted from my purse.
Angeline came yesterday. I posed pennys question to her to see how she would fair. I think I have said before, penny comes out with random words to play with to make showering a bit more interesting. Yesterday's was name a ship beginning with T. Easy, tanker, no. Oh er trawler, nope, and angelines attempt, and a good answer, titanic, nope. The answer being sought, a tug. That's not a ship it's a boat. Lol always a giggle.
Right best shake a leg.
I went to hospice and enjoyed seeing familiar faces.
My tooth was successfully filled and a severe amout of money extracted from my purse.
Monday, 12 March 2012
Makes you laugh
My wee has changed to quite unique colours whilst being on antibiotics. It reminds me of Nora. Bob and Jenny had brought her some beetroot. Nora prepared them with Edith's instructions. The following morning Nora came downstairs looking like she had seen a ghost. "I think I'm seriously ill" she declares. "my urine is a very funny colour." lol, it's pink because you have eaten beetroot, for goodness sakes don't try asparagus.
Jo popped in yesterday with some lovely white roses, they look fabulous. Beth coming this afternoon. I really hope she gets a positive letter for the specials this week. I'm quite nervous for her and hope I have given sound advice.
Lesley came this morning and we had a coffee. Heard from B via email, which was great to catch up on her news.
Oh my goodness she passed with flying colours, thank you Lord. Best day. Beth brought me a lovely card and.....the twilight DVD yippee.
Jo popped in yesterday with some lovely white roses, they look fabulous. Beth coming this afternoon. I really hope she gets a positive letter for the specials this week. I'm quite nervous for her and hope I have given sound advice.
Lesley came this morning and we had a coffee. Heard from B via email, which was great to catch up on her news.
Oh my goodness she passed with flying colours, thank you Lord. Best day. Beth brought me a lovely card and.....the twilight DVD yippee.
Saturday, 10 March 2012
Sue brought Bedford to me
Seeing as I missed out on a trip to Bedford, sue has come for the weekend and brought a great book of photos of Bedford old and new.
Started some new antibiotics last night. I think this is the sledge hammer to get the remaining bug to bug er off. Penny read the leaflet and unhelpfully told me all the possible side effects, she wasn't selling it to me. I might be quiet again this week but I will be ok. I just don't do antibiotics too well. I'm a delicate flower with a sensitive tum.
Lovely bright morning, a good day for mischief. Talking about mischief, where's Ellie she is being very quiet this morning and that does not always mean its a good thing. Right I need to attract sues attention as I need a wee.
Started some new antibiotics last night. I think this is the sledge hammer to get the remaining bug to bug er off. Penny read the leaflet and unhelpfully told me all the possible side effects, she wasn't selling it to me. I might be quiet again this week but I will be ok. I just don't do antibiotics too well. I'm a delicate flower with a sensitive tum.
Lovely bright morning, a good day for mischief. Talking about mischief, where's Ellie she is being very quiet this morning and that does not always mean its a good thing. Right I need to attract sues attention as I need a wee.
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