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