MANY LOSSES

In the last few days and I have been too exhausted to write, sorry!

 For example, yesterday I had a total of 16 people through my door. Today,( a quiet day !!!!!), a mere 10 !!! 

So, I’m sure you understand my silence once again..

So.... the losses......

I had a phone call from a guy I haven’t actually ever met. His name is Roger. Roger is the brother of my friend Nicki. Nicki, I met in hospital at Sheffield. We shared award for 4 days. Nicki was my clone, in many ways . A teacher, same name, similar age... but Nicki had Bulbar MND. It meant that she could walk when I couldn’t,......... but couldn’t talk or swallow, when I could.

Together we made a perfect Nicola.

Though I didn’t know Nicki for long, it was our synchronicity that made us close. In truth I didn’t have too much contact, but I will never forget her.

So as you get to the end of these paragraphs, you will realise that Nicki has died, and that is why her brother, Roger rang.    

I am so sad and offer my deepest sympathies to Roger, and all the friends and family, of dear Nicki.

Today I had another sad letter, telling me of another death. The man who died was called Ken. He was nearly 90 and died of old age, not MND.

Ken was, sort of, a last link with my parents. Ken and Kay (his late wife) were best friends with mum and dad and used to meet up most Friday nights at The Speech House, Royal Forest of Dean. Dad and Ken both head teachers, Mum and Kay both teachers.

I send my deepest sympathies to the three children and, of course my love.

I have many funny happy memories of the Friday nights... especially when too much Whiskey was imbibed!!!

My other losses are to do with my MND.

I can no longer click my fingers on my left hand; I can’t easily lift a full cup of coffee.

And lastly, I made the phone call today to have my car taken back.

This too is a very sad loss. I have been a driver since I was 17.

So much sadness.

HUG ME, I’VE GOT MND

WHEN WILL WE BE THERE?

You know the phrase.. all children say it... usually just a few minutes after you have left home ..... with hours of travel ahead!!

So , what do you do? Well there's always I-Spy, alphabet games, books, songs, ( Heaven only knows how many times I've sung The Wheels On The Bus!!!!! ), snacks (including Haribo or Smarties!) .

And then (You as a parent) pray to arrive!!!

And , eventually, you do arrive. You (the parent) are shattered, but the youngsters energised and happy. ........




MND is sort of similar... You are on a journey. There are differences..... You aren't praying to arrive...... because that's the end.

But the journey is tedious. Its hard to face each day with a sense of adventure and wonderment. Many days show there are changes in your ability to move.

You need more equipment, more support. (For me my legs are now hopeless,but more frightening, signs of the swallow muscles not performing as they should...........)

With this comes levels of indignity, cost and great sadness.

But you cant give up the journey, you cant give up the effort or you're lost, it's over. 
Its hard to keep on this route. So, So hard. You simply don't know what bend, bump or jolt will be next.

In some ways I wish I knew the map, knew what to expect. Would it make it easier... or would it be so scary that you would just crash the car ??

I think it probably would be too scary to know minute detail.


HUG ME, I'VE GOT MND

MARILYN

At 9:00 I saw a txt from a friend.(I  had been asleep in chair for a while). I responded that I was going to bed now,,,,, but. 
Today has not been good.. feeling very weary, but more worryingly , my hands are throbbing and aching. Do hope it's not the start of lack of their use. I will stick to the hope that it's because I have to drag my-self upstairs and rely on my stick to steady me at all times. 


On Monday engineers arrive to put in the electrics for my Stannah stair-lift. I can't quite get my head around the fact that I will be so pleased to have a stair-lift. The speed at which this is progressing is frightening... and I so want to be the statistically (less than 5%)  people who live longer than 3- 5yrs.  But tonight it feels that maybe hoping isn't enough , the progress of the illness marches on and on and on........... so sad.


So anyway, having felt so exhausted  I thought another glass of wine then bed. The wine  perked me up somewhat, and I now find myself watching Marylin at 11:30.


My memories of her go back to my first Girl Guide camp. It was at Horner Water , Minehead , Somerset.. The year  she died. That day my Mum and Dad visited me in camp.
So, two memories: 
My initials are NW and some clown put "IT" after each initial in my Wellies... so I came to be known as Nit Wit Woodman... this nick-name lasted for many, many years. 
My second memory of that camp was that I was constipated. I was told to have a "swig" of syrup of Figs.... Having newly arrived from Miami, I had no idea what "swig" meant. I drank a VERY good draft of the liquid. Then spent many hours tregging back and forth to the "lats" . ( a trench)...
So those are the memories Marilyn evokes. She is so beautiful, 
To this day, "Some Like It Hot", is my favourite all-time, film.
What a beautiful; woman . and yet so damaged. I would live to be as beautiful, sensuous, and lovely as she was... but poor damaged lady... you wouldn't wish those stresses on any-one.


I have an illness, but don't believe I have the fears that, that poor woman lived with. I have much to live for, much still to strive for..... and I will. 


My fear is that when most of my body is in paralysis , you might all reject me. 


It will be frightening, and difficult , for you; but actually more frightening for me. That's why my Blog is called Hug Me etc... 
I so need your help and support now,..... but really, really hope I can rely on you in the future. 


I hope you will be there to Hug Me. and I'll do my very best to hug you back.. Thankyou.

HUG ME , I'VE GOT MND...