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HELEN'S DIARY: I'm too ill for my 'dream' graduation
HELEN Miller, from South Anston, is waiting for a lung transplant and is keeping a diary to support The Star's Gift of Life campaign. The 38-year-old mum of two wants readers to know what life is really like on the waiting list.
SATURDAY
I WAS up a few times in the night with a headache then realised I'd 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.
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 but I may add I feel that because I'm in a wheelchair and oxygen that the women who are offering sniffs of perfume 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.
SUNDAY
IT'S DAD'S birthday, I hope he likes his presents.
I received a mark for an assignment and passed.
My aunt and uncle are coming today to see us.
Had a lovely day but talked too much.
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.
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 two years to write and whilst being written 2,000 people died waiting for transplants, that 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 they have Wales?
Why don't the newspapers, apart from The 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.
That night my local MP Kevin Barron phoned after the email 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 felt fed up of lying in bed.
Lisa the transplant coordinator phoned to see how I was doing.
I've said I'm okay 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, although only time will tell.
I think chronic illnesses either makes or breaks 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 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 with me not working any more. But I'm sure she will do well.
My friend Sue visited me today great to see her.
- The Star's Gift of Life campaign has added the names of 28,000 readers to the Organ Donor Register.
Currently 8,000 people in the UK are waiting for a new kidney, liver, lung or heart. But a shortage of organ donors means hundreds people are dying on the waiting list each year.
Click here to go to the Organ Donor Register
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Tuesday 22 May 2012
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