SPLASH !

I had a really bad night last night.. for two reasons. Firstly, I was to have my first meeting with Sharon , who would be washing me , and secondly I knew I had to be up at 7:15 in order to take off the ECG monitor which was to be collected at 7:30.
Consequently, I slept little and instead of painting as planned , I ended up in bed this afternoon for about 4 hrs. However,this sleep was interrupted by Boots delivering meds....
My prescription arrived with lots of code zero on them... apparently I have to see Dr to get any more repeats ! WHY?? Surely the Riluzole and Metformin are standard as I am unlikely to not need these !!!
I fear another battle !! RATS!!!
I'm so pissed off with these little interruptions. Just when you think something is working, it B****** well breaks down !!!
Why?? It stresses me so much.
MND is hard enough to deal with ,............. well you would think.
Sooo maybe, I've got it wrong, maybe this will just be a simple phone call... but it's yet another "one more",  simple phone call !
Rant Over !!!!

So onto Splash!
I know that showering is something I enjoy, something I need, something I want, and something I have always done for myself since childhood. 
Recently I have found that showering, drying and dressing has been too exhausting... it uses up half a day of energy... AND.. I have had difficulty in the transferring from power chair to shower-chair.
Sooo. THE SOLUTION... get someone to shower me, and dry and dress....
But mentally. what an adjustment. It is almost the ultimate in the invasion of my personal  space, for me. I only see, at the moment, someone feeding me and or wiping my bottom as a worse invasion........ and erosion of dignity........... Is there more ???

What do other MND people think ?? Have you had to go through these issues too ?

Well, Sharon arrived. I was expecting a little old lady, sort of a Miss Marple...
What I got was a tall , friendly,tidy, woman wearing PINK Dr Martins !!!!! YEY !!! Within a few moments I knew we would get along... perhaps the Docs were the clue,(and the colour of them !!!).
Sharon was simply brill. She somehow managed to allow me to retain my dignity, giving me choices in everything... She washed my hair and dried it too. She could see my skin was dry and put on moisturiser... she treated it all as a Spa Day !!

How lovely. I feel confident and very happy that she will take over this aspect of my care.
At the moment she has only two spots, but I hope ,will soon, find two more.

So, after the anxiety all is well. I feel proud of myself, that I have faced yet another hurdle... and got over with success.

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