Diary week commencing 13th December

Diary week commencing 13th December by Helen Miller.
13th December Saturday
Stopped in today watching Christmas films in my bedroom as John Hates them. They are all children’s films I love them, it’s not Christmas if I don’t watch The Wizard of Oz. Abi and I then settled down to watch Strictly and the X factor. Abi wanted JLS and I wanted Alex. It was nice spending time together. Daniel has been ill all day and stopped in bed being sick. I can’t be a mum to him and look after him as I can’t get upstairs and also can’t risk getting any virus. That upsets me more than anything.
I went to sleep happy. AT 2.00 am. I woke to the sound of my Oxygen machines alarm going off which means no oxygen coming through. Abi ran down stairs and started to panic which made me panic and one thing led to another and I had a panic attack and I had an accident. The feeling of not being able to breathe is the worst feeling anyone could experience. We woke Dan to fill my liquid oxygen but he was really ill but bless him he managed. After I composed myself after 30 minutes I phoned dad to come and pick me up as I have another oxygen concentrator at theirs. So at 2.45am I was sat in dads car and going back to theirs. I calmed down and went to sleep.

14th December Sunday
After tossing and turning I eventually woke at 11.30 to 3 messages from John. One saying where am I, The next one asking if I was ok and then the last one saying stop at mums until the oxygen machine mended. He’d obviously woken the kids and asked what had happened as he hadn’t heard a thing.
He phoned back and said the machine was now working after he’d cleaned it and was going to leave it running a bit to make sure it was ok. I decided to stop at mums for the night.
15th December Monday
Dan was off to London today at 5 so I heard him getting ready I couldn’t get back to sleep after that. Early start for me today as I had an appointment at Breath Easy at 11.45 for an assessment for rehabilitation. I was left waiting 45 minutes with o explanation as to why but soon discussed my requirements with the team and have discussed what I am able to do and what I’d like to do. I am going to join the gym and go on the exercise bike. I might be able to do a minute but all these minutes will add up.
Mum and I then went to Meadowhall which was nice. We stopped a few hours and did a little last minute shopping but then went home. I started feeling a little unwell and extremely hot at night but put it down to 2 very disturbed night’s sleep.
16th December Tuesday
I’ve been up all night; I’ve got a chest infection. I can’t breathe in or out properly my chest feels like someone is squeezing me so tight that my eyes are popping out. The only way I can relax is if I sit forward. Even if I sit upright it hurts. I asked Dad to call the Doctor and he came and confirmed my infection. A week before Christmas and I feel so poorly. Dan is still poorly at home in bed and I can’t be there for him.
Daniels teacher came out to see me and told me his attitude and behaviour was excellent He has achieved student of the Term, Governors praise and student of the week. She also brought me notes written by other teachers saying how well he was doing. We are very proud of him.

17th December Wednesday
Another awful night’s sleep coughing all night; nothing helped and sat up most of the night waiting for daylight.
A beauty therapist came to do some reflexology to see if that helped to relax me it did but the cost of this is really only for special occasions so I’m afraid that was a one off.
Mum and I watched 2 Christmas films whilst I coughed all the way through and my friend sue came to visit which was lovely.
18th December Thursday
Worst night yet for coughing ,it may be that the anti biotics are working and trying to bring the gunk up but it just won’t come up yet. I just feel terrible.
19th December Friday
My last Diary of the year and I want to ask you one thing to do for me for Christmas. Please discuss organ donation whilst you are all together over this festive time. It doesn’t need to be depressive and to make to sad. Have a laugh, have a drink and just state your wishes that’s all I ask.
Thank you for reading my diary all year and I want to wish you all a very merry Christmas and a happy and healthy new year. I hope and pray that I Santa grants my wish let’s wait and see.

Please sign up and talk to your loved ones this Christmas

6th December

Daniel

Hello to you all
It’s been a long time since I have updated this blog. I don’t know what as I have had the time but my mind has been in such a muddle and I have been concentrating on my ou assignments but that is really no excuse.
Well Christmas is nearly here and I have all presents wrapped and most of my cards written. This year feels quite strange, I think it is because it’s the third Christmas on the list and we have all had enough of the waiting but then I’m dreading the transplant and what life brings me afterwards. It’s very scary and I can’t imagine what I will feel or how my life will change. They say that having a transplant has a prolific change to your life and that’s scary.
Let’s get away from the negative and think about the positive this year.
John’s business has really picked up and has had new clients that hopefully are long term. I’m sure now his business with just grow from strength to strength and that is a big weight off my mind as I know he will be ok if anything happens (It wont! but I have to think like that)
Abi goes to University in January and has just had her 19th Birthday. In one way she’s ready to leave home and grow into becoming an adult and in another I feel she still has so much to learn and she isn’t ready yet. Financially I know she’s going to get into a pickle but I suppose that’s part of growing up. She can’t cook and thinks going out drinking is a must at Uni. I hope she realises pretty quickly that this isn’t the case and working hard is her main priority. She is studying a DIPHE (mental health nursing) for 4 years. I hope she enjoys herself and gets what she wants out of life by starting this venture. I’ll miss her terribly but I’m making sure that she will have Skype and I can see her weekly just to make sure she is ok.
Dan is the one who has surprised us all this year. Due to everything that has happened to this family over the past few years Daniel has been fantastic. Yes on occasions he becomes a ‘Kevin’ but this isn’t his usual personality. We have received numerous letters from his teachers, governors saying how well he is doing and won many awards such as student of the week, student of the term. As you may or may not know through Dan’s life at Primary school they practically wrote him off and said he wouldn’t amount to much. They didn’t even put him in for his SAT’s become going to the comprehensive (this disgusted me). They just couldn’t be bothered spending a little more time with him and understanding his needs. He became the quite boy who was never any bother and understood nothing. It wasn’t until leaving there and getting involved heavily in sports and being tutored by us all on various occasions that he blossomed. He is now predicted to get his GCSE’s (5 c’s in sports and public service) to name a few. I am so proud of him. He doesn’t know what he wants to do yet after leaving school but I am sure he will choose the right path to take.
I want to be there for him over the next few years and help and guide him through his first job and first girlfriend etc…. Though I don’t really need to worry as John is his best friend and they are inseparable which sometimes I do envy but are so glad about. They both need each other. It’s me sometimes that feels I’ve got no one but that’s me just being silly.
Today is the 6th December and I’ve spent the day alone. It’s been quite nice; I’ve watched films all day with no one saying it’s boring and want football on. I made sure I had lots of drinks and food at the side of me and the phones at the side of me just in case anything happens.
Well ill tune out for now
Love Helen
xxxxx

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.

One day I'm fine, the next I'm really ill

SATURDAY



John and the kids all had a lie in. I emerged at about 10.20am and immediately phoned mum and said I would love to go to Meadowhall and I’d be ready at 12 noon. Adrenaline pumping I got dressed and brushed teeth and had two cups of tea all in one and half hours which is a record. We did a bit of Christmas shopping and listened to the band in Marks, had dinner in Coal with Abi which was gorgeous. The staff said was I Helen from The Star. I’m feeling okay today which is quite rare for me nowadays so I’m happy.



SUNDAY



Watched TV this morning, the Remembrance service, and then got dressed. This year I bought an enamel poppy which I’ll wear all year round to show my respect. I’ve done some work on my degree and then sat and read the papers and watched TV. I was in contact with John all day as I have been buying Christmas presents for the kids. I’ve nearly finished now so I know if I get the call they all have something to open. I said this last year but I’m still here. Had a text from both Louise and Dianne who have had transplants and they are now eating and making good progress.



MONDAY



I managed to have breakfast, bathed and dressed for 1.30pm and then go on the computer. I’m on my next Open University assignment so it’s keeping my mind as occupied as it can be. ‘The call’ is always at the back of my mind. I’m trying to keep strong so ill last until I get the call.



TUESDAY



Hairdressers day whoopee!! The feeling of having my hair done and looking good makes me feel brilliant. This time I’ve got red hair with purple and black weaved in. I love it. Even though I’m on oxygen in a wheelchair there’s no point in not being adventurous, I’ve always loved having my hair done. Abi saw it and wanted her hair like it but I’ve told her to stick to blonde. Julie who I met through this diary has sent me the most amazing box of chocolates and I’ve dived in. I’ll certainly not be underweight anymore for the transplant. All in all a good day.


WEDNESDAY



Read in the paper about the girl who doesn’t want a heart transplant. I totally understand her reasoning and am proud of her decision. Having a transplant is not the be all and end all and when you talk to the consultants they tell you how it really is. This little girl has gone through so much is her short life that I admire her immensely.

I’m studying today and just sitting on the settee. I’ve tried to help John prepare dinner and mum tidied up a bit. Hospital tomorrow.



THURSDAY



Went to the Hallamshire hospital today for my monthly check up. I was there for about three hours. I’m okay and stable due to the slight tweaking of my oxygen and bipap and other medication. Six people came up to me and asked if I was Helen from The Star and said they avidly read the diary. They said it makes them not feel alone when they feel down and depressed due to their own illnesses. Also Val reads my diary and keeps all the nurses informed of my progress. Very tiring day but didn’t have a good night sleep.



FRIDAY



Feel a bit chesty today not an infection but just tight. My limbs are aching but I’ve just taken my pain killers so I hope they kick in soon. Two sets of aunts and uncles are coming to visit me this weekend so it will be nice to see them. I think I scared them with one of my last diary entries but as I’ve told you all one day I’m ok and the next I could be really ill. I’m going to mum’s this weekend as dad’s birthday is on Sunday and also I need some quite time.



*The Star’s Gift of Life campaign has recruited over 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. To sign up as an organ donor, visit www.thestar.co.uk/donor and click on the link to go to the Organ Donor Register.

Published Date:19/11/2008
Modified Date:19/11/2008

New Government report on the Opt out scheme

Please take time and read the report on the Opt out scheme. There decision is to not agree with the opt out scheme due to different factors some i agree with and some i dont. What do you think? We need to raise awareness of the donor shortage whilst ever reports are being written meetings are being held people are dying. Its the time to act now as a nation not wait for the next set of reports and the next time meetings are being held. We are dealing with human life now.
I thought that Britain had got rid of the death sentance well there are 8000 people on it in this country that shouldnt be!!!!!!!

The pain is so raw I don't want to be here

HELEN'S DIARY:

Published Date: 04 November 2008
HELEN Miller, from South Anston, is waiting for a lung transplant and is keeping a weekly diary to support The Star's Gift of Life campaign.
FRIDAY
I have been extremely ill, was in bed and couldn't move. I was struggling to breathe, my body ached. I took my painkillers and diazepam to try and calm me but they didn't touch the surface. I really thought at one point that I couldn't cope a
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ny more. I don't have this feeling very often but there are times when the pain and helplessness are so raw that I don't want to be here any more. I didn't even have the strength to cry. The hardest thing when you start to feel better is looking at your family and seeing their faces and the despair they have gone through.

SATURDAY
I made John, mum and dad carry me to the car and take me to mum's.
John had not slept for two days and was so upset he just didn't know what to do. The kids couldn't cope and were really upset. Then I started crying because I didn't want to leave John and the kids. You always need your mum, and my daughter needs me and I can't be there for her at the moment and it's killing me.
SUNDAY
I started to feel a little better but very weak as I had not eaten since Thursday. I managed Weetabix. In the afternoon I had a bath.

MONDAY
THIS is the first time I've been well enough to go on the computer and read the papers.

TUESDAY
I slept through the night – this is so unusual for me. I managed to bathe and get back in my pyjamas by 3pm today so things are looking up.

WEDNESDAY
UP at 11am today and washed by 2pm so getting better. I wish now dad had taken photos of me at my worst so I could show you all. Every picture I have is when I'm really trying hard to look well.

THURSDAY
I never know if what I am suffering is due to that or something else. I feel like I'm living in hell at the moment. I am positive but just weaker.