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Friday, 11 January 2013

SO WHY WAS I SO UPSET???

Yesterday, as I hope my Blog showed, I was upset re the death of Alistair Banks, Alistair the Optimist.

Why?

Well there are so many parallels. Ok Alistair was fit and 20 yrs younger than me. But he had the same illness: MND type ALS.
His video interview on Ch 5 shows him one year after diagnosis in a wheel chair. He describes how it all started with his leg . He limped and his foot flapped. (At this point for me, I too wondered what was happening. I walked as if I was drunk, (even at 10:00 am ), and I felt people treated me as such. This was hard to cope with. )
He was a teacher, he was creative.
Alistair was very positive and , I guess , thought that by being positive, he would make his life ,not only , useful, but also may well extend it. Well these are my thoughts , and they may well not reflect his, but somehow I get the feeling that they might well do.
On the Ch5 interview, one year into diagnosis, he states that not only have his legs gone ,but that he recognises other bits are going............... this is exactly my scenario.
My legs are hopeless. My arms and hands cramp frequently and though I still speak with a strong voice, my neck muscles also cramp on occasion. I know they are on the way to becoming weak and eventually unresponsive.

Alistair lived 2 1/2 yrs after diagnosis

The MNDA give a 2 yr life expectancy and the NHS give a 3 yr life expectancy....
average, yes, 2 1/2 yrs.

OK, some people do live a little longer and this is where I was confidently heading..... I thought, no go back on that , feel, that if you are positive, you will beat the averages.

BUT, Alistair was positive, he was so positive, and yet he didn't beat the MND averages.......

So that's why I , personally, am upset.
A selfish view , I do recognise.
I don't wish to be selfish and am somewhat, ashamed of my feelings.

Alistair leaves a wife and small children. Really sad and difficult for them.... I do, so, know this.

For me there is not partner to upset and though I have children, and of course they will be upset and sad, but they both have loving partners and will survive I'm sure, as they will be loved, cherished and cared for.

So a somewhat self centred response to a dear, strong mans death. But I thought I should write this, as this diary was always intended to be my honest views of my dealings with this horrid disease.

Please , to try to be compassionate towards me as you read this. I pray you don't judge this as the views of a self centred person, but more the views of someone whose fears have been unveiled and who is frightened............. and sad.

But I shall wake  with my spirit encouraged by you, my readers, my beloved friends, and also by the visits of my family and  grandchildren.

Who can feel sorry for themselves when there are so many potential joys abounding. I will regain my positivity and dream / no ,anticipate that I will beat the averages.

HUG ME, I'VE GOT MND.

Thursday, 10 January 2013

THIS COULD HAVE BEEN.... BUT IT IS'NT!

So, I havent written for a few days. Why?
Well that comes under THIS COULD HAVE BEEN........  The Ugly, The Bad, The Good.........

The Ugly: The words I used when I dropped the soap in the shower and when trying to retrieve,(and failing!), I hit my head. The feelings (negative), I had  towards the person who woke me at 8:35 and asked me to make an appointment..... ( I  keep books, ibuprofen cream, a glass of water, even a torch by my bed......... but not my diary!!!). How much I wished I could murder Alexander Graeme Bell after the phone rang and rang yesterday, and practically each call gave me another issue to solve !
The Bad: Tired , so so tired, so I had an afternoon nap....... one phone call and two deliveries later, I gave up. Emails to answer. Photocopies of passport etc to be certified, (For the second time, for the same process!!). The fact that I must have ticked the wrong box, though I thought I hadn't, and will be charged £35 for  the morgage money to be given to me. Yorks Water telling me that I use 50% more water than the average single person! Finding out that my house is  Leasehold not Free hold.... (have never paid rent!) Should have gone out today but too exhausted and dragged down by dross!

The Good: Tescos Fish Pie, yummy. Phone calls from my daughters. Emails from friends.Visits from friends. New jeans in sale (turquoise!yey!!!) £9 !!! Very Yey!!! Speedy call back from Wrigley Claydon re Free/Lease Hold info and copy to be sent of tenancy agreement. (999yr lease from 1909... so cant see a prob!). Friends visiting.

So this could have been another of my rant Blogs... and believe me, I could have bored you rigid with the detail!, but I heard of a death today. A man whom I didn't ever meet, but felt I knew. Thoughts of him cause me a sharp intake of breath and  deep sadness.
and thus now to write.......


BUT..... IT ISN'T
Because today a great Campaigner  for MND awareness, himself suffering with MND , ALS, died. His name was Alistair. Known as Alistair the Optimist. He was a husband, a father a teacher and enjoyed singing. His record was used by the MNDA as a face of MND . I remember so vividly hearing his words at the MND conference in spring last year.

As a tribute to Alistair I shall include two clips from You Tube.


ALISTAIR R.I.P.







HUG ME, I'VE GOT MND.

Monday, 7 January 2013

WHAT A DAY!!

I woke at 5:00 with griping pains in Tum.......... things not right since illness at beginning of Dec. Resolved : phone Overgate Hospice to ensure I see consultant Rachel tomorrow.. (Sorted this afternoon).

I spent the next two hours awake  and used this time to try to get comfortable and plan for my day.

I had planned to go to Hebden Bridge: Visit the chemists to sort prescription.. (needed on Wed.) ......... Take annotated care assessment form to Social worker( some errors) , book appointment with Psychiatrist ( feeling low some days and need to talk things over, like preparing for the end of life), post letters and parcel to Tam, also get to  form from Post Office which will certify documents are accurate.. needed for mortgage ( though why the hell I can't imagine, as they have all been taken by original broker... why can't he just pass on that he has seen this original info ??!!). Then on to Tod to check access to Philosophy class which happens every two weeks, and I'm interested in joining. AND I NEEDED TO SHOWER.

But I thought it out.
Laura could post parcels.
Laura would push me into shower.
Hospice would/ should be able to certify documents.
Ginny would look at access.
Carolyn would take letter to Social worker, same building.

You do need a brain to be this ill! LOL !!!

I decided to sleep........... woke at 10:50.
Laura came at noon.
We had a coffee and sorted list out .
Elsa took prescription in , Phone calls sorted lots of bits......... more than mentioned here............. lists are great!!!

At 3:00 not 4:00, as planned,  Carolyn and Karen arrived. They put other bed support on the far side of my bed. This will help me turn over more easily. A few accidents occurred,  as I have cables running everywhere...... but nowt that cant be fixed! BUT  Most difficult, is TV not working. Its ok as TV now as I've retuned it ,but the HMDI cable isn't working, so I have to get to bed by 10 in order to ensure I can watch Lewis ! No pause or record as usual. However friends coming round tomorrow and I am sure they will be able to sort cables. (Please). I did do my best to fix this , but getting into the corner in a wheel chair is, virtually, impossible.

Sue came to visit and we had brill chat. But when C and K finished bed, it was time for me to walk. This was not easy, and I'm ashamed that I did weep. BUT, with the new year resolution re Mascara ! What a mess my face was. Mustn't cry too often !!!

They all left, and my scanner which was showing errors all day was my next challenge! I had decided that the bank statement wasn't proof of address, (needed to be certified by Hospice tomorrow), so I thought I would copy a gas bill. Easier said than done. The scanner would NOT copy !!!! RATS !!!! So I thought, trick it! I scanned to computer and then printed. It worked !!!! YEY!!

So I've had my 6:00 GnT at 7:00 !.....Have  done Facebook, Blogged ( here it is) and will be soon heating Pasta Carbonara courtesy of Tesco !!

Bed at 10:00.... Lewis  and new clothes to wear to Hospice tomorrow............ Reflexology to look forward to and to seeing my special mates Jackie and David.

And tomorrow evening.... drinks with J & K and my TV fixed.

What a day !!!

HUG ME, I'VE GOT MND

Sunday, 6 January 2013

CREMATORIUM CAMBRIDGE, ELEANOR ROSE VICCARS, MY BELOVED DAUGHTER.

I asked my college friend Christine ( who now lectures at Homerton) ,that if possible , would she visit the crematorium at Cambridge and take a pic of the book of Remembrance for me.  Today is the day it is open on the anniversary of my daughter, Eleanor s , death... and I doubt if I will ever get to be there again.

Chris said she would do it.

This is the response she sent me :

I went to the Crematorium first thing this morning and wanted to describe
it for you. It was misty and quite mild and I was the only one there. I have
taken a photo of the view before I went into the room. The Remembrance
Books are kept in a small cosy room that has many plants and cards spread
across the floor and shelves. Eleanor's name was easy to spot, second from
the top of the first page of the book as you step in the room. I didn't
know if I would be able to leave anything but I had brought a small pot of
early snowdrops. I spotted a card with some poignant words that I liked
and have taken a photo of the snowdrops alongside the card for you.

I thought the snowdrops would be happier outside rather than in, so I
walked through the gardens, thinking of both you and Eleanor. I discovered
a recently designed part of the garden that is dedicated to 'all babies and
children so briefly known'. It was incredibly still and peaceful just to
stand there in the mist. I left the snowdrops by a mother deer and her
small baby. 





Christine and I had been in touch since 1970 when we finished college, but also met up at Mill Rd maternity Hospital, when she too, was pregnant. Her second child , Laura, ( a successful  actress , but I don't wish to reveal personal details here, as these are friends not celebrities to me),  was born whilst Eleanor was alive............. but prior to this delivery  Christine visited me..... bringing  some perfume..... Magie Noir... To this day I can't cope with  this fragrance as it brings back, too vividly, that visit........ but Christine knows this ........ we have discussed it........ she understands.......

And as you can see, she so does understand ............. how lovely was her response to my request to go to the Crematorium.


Thank you so much Christine..... My love always...... this memory is so important to me and you have made it happen.

Big hugs always..to my dear friend .........


HUG ME , I'VE GOT MND.

Saturday, 5 January 2013

TOO TIRED

Sorry , too tired to write much tonight. I'm aware I still need to recall manic fri! Will try to tomorrow. Have spent today doing bits around the  house...

Two big thankyous :

Firstly to Liz who worked overnight last night , and yet still came to take down Christmas tree. I had hoped to have it up for Liza and grand children's visit... But it's been postponed... AND Tree so so droopy! It was sad to look at! So decks in loft. Happy to wait for next year! When they will appear once again. Hope g chn see tree next year and collect pressies !
Under the tv simply isn't the same!

Second enormous big thankyou to Chris D , we were at college together. We have been friends since 1967..... Chris lives in Cambridge and I have just texted her to ask her ,that if she is free tomorrow, could she go to crematorium , as its the anniversary of Eleanor's death... And the book of rememberence will be open at her (Eleanors) , page.
 I would love to go to Cambridge myself. Walk in the gardens... But can't.
So I asked Chris if she will go and take a pic for me... She has , kindly, said that she will.so tomorrow.
Sad , but happy , that a friend is willing to make this memory for me.

HUG ME, I'VE GOT MND

Wednesday, 2 January 2013

NEW YEAR RESOLUTIONS

Resolutions, sometimes do work... they're all about beginning to activate a habit which will do good. I can remember many, many years ago (before it was easy to do it), my resolution was to recycle glass. I took three full years to ensure that this became  a habit ! But I did it!

That was an example of a resolution which was altruistic in nature. More often we make resolutions which are personal aims... loose weight... being a prime example.

But why do we do this each year?
Well , I know why I do it. For me, each new year seems to give an opportunity to "put right" wrongs... too harsh?  It actually does seem to me, that by resolving to do better in one way or another, wipes the slate. You can start again, freedom/release from, past misjudgements. It's almost like being forgiven.

I love the feeling of  even simple  fresh starts. For example, I loved a new exercise book at school, love clean sheets , love showering and putting on fresh clean ironed clothes..... simple examples of fresh starts.

Perhaps I'm one of the few who feel this rather deeply, perhaps thats why New Years Eve seems so important to me.......... and if you find it weird? Well I respond: It simply wouldn't be good for us all to be the same!

So what fresh starts can a woman with MND make?
This year my resolutions are quite selfish and are about being me. Allowing myself to be in charge more and not run by the MND.

I want to live my life as Nikki Rose Woodman , who happens to have MND. NOT the woman with MND called Nikki. During the past year it has often seemed that MND has engulfed me, taking over my personality, like a parasite.

I've been anxious re so many appointments breaking up every day.
So my first revolution  is to give my self time. Time to paint, time to read, time to listen to the radio, time to have a nap if I wish....

It may be selfish, but if I have only limited time left, I need to spend more of it as I wish.
This doesn't mean I don't/won't welcome your visits, (because I value them above all), but it may mean that I need to keep certain days completely free... I hope you will understand.

Other very simple and perhaps daft resolutions:
I'm going to wear mascara each day. This is about taking pride in myself, again, valuing myself. If I look better , I will feel better.
I also will allow myself not to eat crusts, I've never liked them, and always eaten them.
I  will have butter. For years I've used butter substitutes , thinking they are "better for me".
I will wear what-so-ever I want... and if this means PJ's all day... so be it!
and finally, for now.........
I will ask for help, ( this can be difficult), but there are some things I would like too do which, with a friend, will be achieved more quickly... like scanning in old photos.


I reckon  I might need to revise these as time goes on. So I'm going to allow myself the freedom to count each new first of the month as a time to revise ..............
Well I can't wait for Jan 1st  each year can I ? There may not be many left, BUT multiply these by 12 and there are plenty!! YEY!!!


HUG ME, IV'E GOT MND

Tuesday, 1 January 2013

SHOULD HAVE BEEN ABOUT NEW YEARS RESOLUTIONS

Yes tonight's Blog, should have been about resolutions.... well mine anyway.. but I've had a rough day, so tomorrow will be positive re resolutions.......... and comment............... I promise!

Jan 1st 2013: I was awakened at 8:25 by a lady who often rings me by error.. asking for Mark... Usually I'm kindly and try to explain that she has dialled incorrectly. She seems to be elderly and somewhat confused... But I snapped ... then felt ashamed when she hung up. Other friends rang... and I was so tearful ! Ashamed .......... Again!  I did get better as the day wore on,  and so was Ok by the time my girls rang.

The reason I was weepy was that I felt sorry for myself. I had spent last evening by myself. For me, New Years Eve is more important, more important, than Christmas, and always has been... always has been an emotional time when I want to be with friends........ And............ after all,  I'm hoping that last night wont be my last ever Dec 31st.
But it may have been.......... so I was sad....... having never been alone on a Dec 31st in my life !

So just to let you all know: I don't mind being on my own for Christmas.

 BUT I don't ever, ever, EVER! want to spend New Years Eve on my own again.

The next one may be my last, I hope not, but lets face reality, it may well be........

SO.. You are all invited to my house.. RSVP.. Then I can order Fizz and you please bring food...

Please put this in your diaries now.

Thankyou.


HUG ME. I'VE GOT MND