June 2006
This has been quite a bad month for us,I have been ill with diarrhoea and vomiting and spent a week in bed.It has weakened me further,but thankfully I'm starting to get over it now.
We've now had a new gantry hoist fitted,which is like a frame that sits over the bed (like goal posts) and the hoist runs along the cross bar. It's made life a lot easier for Sharon and the carers.
Since coming out of hospital I've found that I have less energy and so I'm spending less time on the computer and more time in bed (idle sod,I hear you all say).
As I move closer to the end of my journey,I have been doing some thinking and have decided that I won't go back in hospital again.I would rather be comfortable and treated at home,hospital stresses me out too much.
I've also decided that I wouldn't want resuscitating again if the need arose,I don't think either of us could stand going through that again.
That's not to say we've given up,where there is life and love,there is hope.
July 2006
July has been too damn hot and humid,in fact one day was the hottest July day since 1911!
We finally got our wheelchair accessible van,a Renault Kangoo,through Motability and it's great. We've been scooting around here,there and everywhere,it's so good to be able to get out again. Even ordinary things like going shopping and visiting relatives seem like special trips.
We ended the month with a suprise birthday party for mum who is soon to be 70. All her friends and family were invited and her face was a picture as she walked through that door. She loved it and everyone had a great time,even Sharon and I had a dance together.
As for me,I'm feeling fine. Life is good and I'm glad to be alive!
August 2006
It was Sharon's and my mum's birthdays this month,so we had a party/bbq at our house to celebrate with family and a few friends.
I can no longer go to the local day centre due to some legal bullshit about me having a trache,etc. So I'm limited to going to the supermarket for my weekly trip out,lol. We did have a good afternoon out at a local stately home ,Newstead Abbey.The weather was fine so we had a good few hours walking round the gardens.
I still feel good with no noticeable signs of further deterioration,although I could have another infection in my feeding tube site. So I've been to see the doctor and got some more antibiotics and had a swab taken.
The trache is still doing ok with no problems,I'm even getting used to the monthly changes even though they're not all that pleasant.
We've now had over 10,000 visits to our website since it started in April,2003. Thank you to those that have visited,and continue to visit us.
September 2006
I've had some problems with overgranulation round the stoma of my feeding tube. Overgranulation is an area of raised,inflamed skin that is very sore and bleeds easily. The District Nurse has given me some Lyofoam dressings for it and it's much better now.
Also my breathing is getting bad when I'm asleep,I get headaches in the mornings when I wake up and I'm very sleepy the whole morning,both signs of carbon dioxide retention.So I'm waiting for the doctors to sort something out to help me breathe at night.
There's nothing much more to report this month except that I still feel fine,despite feeling tired all the time and,other than my breathing,I've not noticed any deterioration in my physical condition.
We've not had any trips out recently,only to do some shopping,still that's better than nothing.
Copyright © 2004 - 2006 Rob Marshall