Latest Diary

Diary week commencing 15th November

Saturday

I was up a few times in the night with a headache then realised Id not turned the oxygen down. I tossed and turned but then didn’t really get back to sleep, I had terrible stomach pain and my breathing was heavy. Put TV on at 8 and watched the news. Went to Meadowhall (as you’ve probably already guessed) and I have a gripe with the big cosmetic counters. I love make up and perfume and when I go and look around usually to buy ( I may add ) I feel that because I’m in a wheelchair and oxygen that the women who are offering sniffs of perfume etc or offers totally ignore me. This really hurts. One woman helped me today when we asked for help in Hof and she was excellent so thank you. Just because you are in a wheel chair doesn’t mean that you still don’t want to look and smell nice.
Family gathering at mum and dad’s tonight as dads’ birthday tomorrow. Chinese and Indian – FAB.

Sunday
Dads birthday –hope he likes his presents. Received mark for assignment and passed. My Aunt and Uncle (dads brother) coming today to see us. Had a lovely day but talked too much and once they went I was so tired I went to bed to rest and watch TV. That’s the trouble with me , when I go out or meet people I try my best to look and sound my best so sometimes giving people the wrong impression of how seriously ill I am as once I am on my own I just collapse and lay on the settee.

Monday
The government committee has released the UK taskforce report on the OPT OUT scheme for organ donation. I have put the link on my web site www.helen.miller.co.uk for you to look at. I am disappointed that they are not in favour of the opt out scheme but glad that the media are still giving organ donation the media attention it so desperately needs. This report took 2 years to write and whilst being written 2000 people died waiting for transplants (takes some digesting doesn’t it). All these reports, meetings, think tanks, takes months and years to decide on the actions they are going to take meanwhile thousands are dying. In the meantime its people like me that have to keep reminding people how important it is to talk about donation. Why don’t we have TV adverts like Wales? Why don’t the papers (apart from the Sheffield star!!!!!) make a conscious effort to remind people? I have written to my Local MP today asking these questions, I’ll keep you informed if I get a response.

Tuesday
My aunt and uncle came today to visit me. We had a lovely day. Dad and Uncle David upgraded my lap top that I’ve given abi for university. Aunty pat bought me a beautiful bag full of body shop goodies.
7.00 That night my local MP Kevin Barron phoned after the e mail I sent and we discussed what could be done about organ donation and the report that has just been released. I am going to keep in contact with him as he is chairman of the Health Committee and will be looking into this report.
It was my graduation today at The University of Huddersfield for my Cert Ed (teaching qualification) but due to this bloody!!! Illness I was unable to go .It has always been a dream of mine to wear the cap and gown and I wasn’t able to do it.

Wednesday
I had a really bad night couldn’t sleep and woke many times. I woke early and decided to get up as fed up of lying in bed. Lisa (transplant coordinator) phoned to see how I was doing. I’ve said I’m ok but the illness and the waiting has really taken its toll on John and the kids and I doubt we will ever get over that (only time will tell) I think chronic illnesses either make or break families due to the immense stress it puts on you all.

Thursday
Yes again I’ve not had a very good night sleep but I’ve got used to that now. I ordered some make up on the shopping channel (john will kill me!!!) on Tuesday and it came today. It’s lovely and cheered me up. So I’ve made a concerted effort to put my make up on even though no one will see me today. Abi has just heard she’s passed all her medicals for her nursing diploma in Chester so my daughter leaves in January to start her own life and a fantastic career. She intends to do mental health nursing. She is so excited. I don’t know how she is going to cope financially as we are not in a position to help a great deal me not working any more but I’m sure she will do well. My friend sue visited me today great to see her.