I NEED QUALITY TIME.

ok.. So we who have MND are terminally ill.

( I know others are too and I'm not dismissing them in any way, but just writing from my experience... though I guess that the issues for this post, may well be the same for us all. )

So I think we may think of our time left in one of two ways..(or at least on the spectrum).
1. I'm ill , I've  got MND .. (sort of becoming defined by the MND, letting the MND take over )... OR..
2. OK I'm terminally ill, I've got MND ,but that apart, I still want to be me.

I feel I am in the latter camp.

I desperately want to be known as Nikki Woodman, who happens to have MND..

BUT this is so hard to manage.

Take today for example.

I woke at 9:45, ( late I know, and a nod towards the MND, ie difficulties of sleeping, it's awkward as I don't turn and thus get pain , thus don't sleep well. )

I was washed dressed and had had breakfast by 11:10... again I wish this could have been faster, but it takes a very long time to do these tasks. In fact I was so shattered by this time I didnt actually get my foot supports on.

I rested and at 11:30 Michaela, Physio arrived. I asked her to put on my foot supports for me.We discussed the bed and sleep issues. The reason for this was that: On Wed I had had the topper mattress removed as I was very VERY hot in bed and found it difficult to get into bed as it was ,by  2",  higher.  BUT last night I was boiling too.. so it wasn't the fault of the Topper. I also had pain in my hips. I said to M that I would just take paracetamol for the pain. She then pointed out that my skin rips ( I have a silver dressing on toe when I scratched an itch and the skin stripped off ). So therefore if I could reduce the height of the bed and keep the topper to try to prevent pressure sores it would be best.

She set to work. Off came the castors on the bed reducing the height by 1 1/2" height.... tonight I will see if I can get in. She remade the bed putting the topper back on.
We then talked about my getting into the new  Rise and Recline chair. She brought a 3-legged walking stick which I can use to support myself whilst getting in the chair . The problem I have is that my left leg wont support me , which it needs to, to turn to get into the chair. By putting my weight on the stick I'm more supported and able to access chair.

At this point Rose and a student arrived, they are wheelchair services. MY neck rest has not been able to be adjusted to support my neck for several months. Thus I have headaches and Michaela has to massage me as frequently as she can, though I am aware I take much of her time allocation. By removing the support I have for my lumber area the headrest was more in place... but it's a compromise... headache or backache !!!!
I will got to the centre, ( soon I hope ) and items will be suggested to customise the w. chair.

They left.

10 mins alone, and then my friend Janice arrived. She helped loading the d.washer , putting Tesco stuff away ( he arrived mid w.chair session) and the unpacking some art materials ( they too arrived during the w, chair session ).

Janice and I shared lunch and a glass of wine. She left at 5:10. I very nearly went to bed , desperately tired ! But had a coffee and the phone rang.

Julia , OT, asking me about the Rise and Recline chair. I suggested that support needs to be in place in advance of the problems, and they are better placed to know what is likely to be the next event. However, I flagged up that getting off the toilet would soon be a problem, ( Im having to rock back and forth to get enough momentum to get off... I feel this will not work soon... ) .She suggested a hoist.
AH! I said, and who will work it ?
AH! she said
..... these matters are left floating.... I hope some thought will be given to this problem and that there will be a suitable solution.. and that it wont be to have a catheter or to wear nappies
.... not yet at least....

So off the phone. It rang again. My friend Elsa with some ice-cream.. YEY!!! She only stayed 15mins...

Then I started to write this.

So, this Blog is about time for me ....... What time...?????   I can't do without medical support... I don't want to do without friends.... but I do need time, just to be me. 

Being me... ME...
ME the person who may longer go out to work , who may no-longer do voluntary work,  may only go to the cinema or theatre occasionally, may want to watch a TV prog quietly ( or listen to the radio or read), and who desperately wants to paint.

My painting is one of the times when I am me. My painting style has adjusted because of the difficulties of MND... But I actually find solving these problems interesting. A way to beat the B disease !
I seem to be painting on smaller canvasses. I use a lot of Liquin Light ( the paint then flows well and is more controlled), I also find using shorter brushes easier.


I haven't Blogged for 2 days, nor been on Facebook, nor Twitter, nor answered a number of emails and txts.......

BUT, can you see why? Its time. The very little , very very little,  bit of time I have,  I simply want to be me... and finding these moments is so so hard !

But these moments are so so important. No ! More than that ! Vital !!!
I do NOT want to be a MND victim, (Yet  I can see how it happens ) , I really , really want to have quality time for me.

It would be easier with money, I could employ a PA to take over these things, or  easier with a partner, who could at least do some negotiations or use a hoist, it would be easier with the right equipment at the right time (good will and professionalism always comes from the medical people, its the funding where the gaps lie ).
 It would quite simply be much easier without MND !!!!           LOL !!!!

I said to my friend Elsa the other day, this disease is so much harder than I thought it would be. Why she asked?

Well ,I simply assumed that help would be there. That it wouldn't be necessary to go through all the questions, funding issues etc etc etc...
That having MND would simply be enough to sound a bell which switched a support switch which would power into action... sadly it doesn't.

And at the very bottom of this long Blog...
Please world just let me be me.
I have MND, but don't know me for that. Know me for simply being me. Please let me spend some of the time I have left doing the things that make me , me .

Thankyou..... and

HUG ME, I'VE GOT MND