I'VE COME TO FIND IT HELPFUL........

I've always found it helpful to write things down.
This action took a while to come to.

When I was younger, in my 20's.. I was hopeless at helping myself if I got in a state, and would rant or slam doors or bite my nails harder or shout or cry or............. !!!!!   .... well generally use a lot of energy and get absolutely nowhere!

I guess I have a volatile personality. I excused myself on the grounds that I was "artistic"... Actually, I now realise this was simply bullshit. I was allowing myself to behave in a puerile manner... and as a young adult this wasn't reasonable.

I guess it came with responsibilities of being a parent, that I realised I needed to be calmer, more in control...

I took to writing letters to address issues or to inform people of my arguments against the irritations I found. (I used to almost get tongue tied when angry.. You know, when you think back and say to yourself .... "I should have said this....... or that"   and then you get even more infuriated.

So I wrote these letters and then read and re-read them. Then, I would either tear them up into the tiniest pieces(like confetti) , or sometimes I would burn them. I found this a way of eliminating and calming my angst and any general rage.

Why do I have, did I have rage ? I guess it was a little to do with the nature nurture thing. Some part of it genes, and some to upbringing. Dad was very artistic and also very volatile. He would let rip like a firecracker. He often started a rant with "God bless my heart and soul....rant... rant...rant !!!! He never did learn to control his anger, he always let rip. And, it seemed to me, often Mum or I would be the butt of it.

Dad had issues re depression, was prescribed medication, but would never take it consistently, thus it never worked. I also remember once when had an appointment with a psychiatrist and it turned out that the Dr was younger than him, and more-over that the Dr was a WOMAN !!!!! Well he never did go back !

I too have a diagnosis of depression.. BUT I take my medication and I attend appointments. The services have improved over the years, I'm sure. I  find CBT beneficial. AND since being on a brilliant medication , for the last 8yrs, I am saved. My only difficult times now are when I am over-tired. But even then I do try to control any desire to rage.

Generally I found in my 40's and 50's, and indeed up untill 2yrs ago, I would write down issues. I have endless notebooks ! Through these years I also found simply writing lists... two columns   Positives / Negatives.... helped.

And now I have MND.
Something horrid and a real thing to rage against. But strangely , I don't. I simply accept that I have this horrid disease.
I am actually probably more calm than ever before in my life. This doesn't mean that I want to have MND, it doesn't mean I want to die earlier than I thought I would, it doesn't mean I don't fear death, it doesn't mean I am sad that I wouldnt see any more grandchildren born, it doesn't mean that I'm devastated at the thought of leaving my children and the effects that my death will have on them........

I do write still.  Here it is.
I have found so much solace in writing this Blog.
I have many readers ,85-100 per day. Some contact me directly, some on the blog, and many many people Tweet me...@1949NW .
The comments I receive are amazing. I seem to have a whole new set of friends/family. I gain such encouragement from these comments and I am becoming proud of this Blog, because so many people have said that I have encouraged them to fight and given them inspiration.

And yes I do fight,  By being calm about MND doesn't mean I don't fight. I am a single woman living alone and actually every day is a fight to manage my life.
 Most days I win, some days not.
I find accepting MND is not too hard ( its a fact, I have it !) .\
BUT it's the side effects eg..... having a sore bum from being in an uncomfortable wheel chair all day,...... having to have someone else  dry my intimate parts, because I cant hold a towel strongly,.... all this is hard to live with  .
I control this , not y raging, but by speaking out firmly but politely and also by writing.

I also escape the MND horrors by painting ( when I can ).

Having time to enjoy life ,while I can ,and not be regimented by caers visits, health visits etc........ is difficult.
I fear painting time is SO diminished.
If I had carers all of whom I could trust,  all would be so much improved.
 I don't have consistency, except from two of the night sitters , Laura and a few of the day care staff. The others I have to watch  or instruct, time and time again !

I sometimes wonder if it is I who is fussy, but actually I don't think so. I expect trained people to be handling my body.... I don't have to make best friends of them ( nicer if I do), but just the simple skills should be in place... so for example, my catheter tube wont be pulled, my leg garter isn't twisted, my clothes are smoothed, I'm not left hanging from the hoist too long whilst clothes are sorted...( even though I go through with them each morning !).

So ,you will see, if you have read to this bitter end. Writing does help me. Its one of the reasons I Blog. Its also a diary for my family to look back on in years to come....... I wonder if they will ?

I will ask Liza this evening. She is visiting with my grandchildren  for the weekend... I'm so looking forward to seeing them all. ( So don't expect a Blog tomorrow, I'll be playing or resting !!!!!)


HUG ME, I'VE GOT MND

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