Sunday has arrived and we are still both very tired, we haven’t ventured out to the gym yet. The first couple of nights I think both of us went to sleep as our heads hit the pillow. As I sit here writing I have a cat curled up behind me and Jake looking at me expecting a pat. Life is slowly getting back to normal, by normal I mean , lawns to mow, patios to sweep, clothes to wash and iron and things that need fixing when they break down. The other night I had a call of nature and walked down the passage into the toilet and my bear foot landed in water. I got the mop and cleaned it up and looked for a cause but being tired and without my glasses I thought it must have been a leak in the connection between the toilet and the cistern and I went back to bed. Early next morning as I escorted Jill to the toilet we had the same amount of water. With a bit more light and my glasses the problem was the cistern – leaking. I pulled it apart and checked the washers and valves but to no success. I now have a new cistern – the old one was some 20 plus years old. Still have a slight problem – the cast iron connecting pipe work to outside has started to corrode and also leaks. More major than I can repair – so will need a plumber. We are going to renovate the bathroom and add another toilet so that will have to wait with an ice-cream container catching the drips.
Jill has already been back on the Crazy Fit massage Machine and I have noticed her getting back some of her voice. The cold had almost taken it away and she had got almost silent except when I annoyed her. She spoke to Chris and Allison on the phone last night – so that is encouraging.
Since we have been home I have added some further information to the blog – Pages, about MSA.
Its breakfast time and we have decided to continue the diet – but using the CSIRO diet and work through both books. Guess what my favourite breakfast this morning – scrambled eggs and bacon.
Thanks to every one for your encouragement for Jill & I to continue this fight. We had an email yesterday from one of our stem cell family, about what one of the other patients at Qingdao had said to her.
The new English patient’s wife (he has advanced ALS) said it so well: “we can’t give in until the fat lady sings and she isn’t singing yet”. Here’s to endless singing. Love, Joanna.
You will have to put up with this lousy voice for a long time yet. See you next week on the net.
