Pages

Friday 13 January 2012

IT'S LATE!

I am trying to write each day , so I guess this will mean I'll have missed Thursday as it's just after midnight.. but tomorrow doesn't start for me till I've slept.. so it's still Thurs for me!!  OK? !!
Why so late, you may ask? Well ,I have finished and printed my DLA form... all 61 paragraphs of it. I then took the opportunity to write an extra note:



"Motor Neurone Disease is a cruel disease. I have been getting weaker and weaker since May 2011. But my actual diagnosis was only in December 2011. That is why I am applying for DLA now.
I realise I will need much care in the future. At the moment I am just about managing as I am spending my own money, on my care needs. But it’s a fact that if I wish to have any energy to do normal things, in the life I have left, then I do need a cleaner etc....
My biggest need is for the mobility aspect of this claim. I am still driving, but I know I would be more secure with an adapted car. I have worn out the carpet on the clutch side of my new car, in 3mths; this must be because of how I have to hold my foot to be able to drive. I do hope I qualify for the higher rate mobility aspect of DLA, as it is a pressing need.
I have been an active person, worked all my life and have done much voluntary work and am a great traveller. This has all changed. It is so sad. I am grieving for my life. Please help to make what activity is left to me, as possible as you can, as I wish to live as normally as I can, until I absolutely can’t.  In terms of terminal illness by your definition of 6 mths, I’m not there. But I may not have too many months of being able to get myself around and do things that are normal to me.
Thankyou for taking the time to read this statement.... ".

I do hope this adds and doesn't mark me out as a smart arse!

My other big news is that the fireplace is finished and the room a bit hoovered. Liz is coming tomorrow and starting to wash down walls and I shall contribute as tea maker and washer of skirting boards, The fireplace does look lovely, an extravagance, but it will make the room so pleasant and happy, to paint in.

I couldn't write yesterday about my visit from the Occupational Therapist.. I was rather upset as she was clearly identifying my future needs.. This includes a through ceiling lift rather than a stair lift, as there will become a time when I can't transfer from wheel chair to stair lift.
 It brought me up sharp, to hear someone else saying this. I had thought it, but it's so different when another speaks it out loud.
The other problem concerned with this is that she felt the changes to my home, might be too expensive to do and thus I might be better off moving.. I am so happy here, the very thought is upsetting. I also feel that I have always lived somewhere pleasant , I don;t want to be dumped just anywhere for the last years of my life. I feel I deserve more than that and the thought of it makes me weep.
Bed now.

SO HUG ME, I'VE GOT MND

4 comments:

  1. I guess you will not get this big hug until you have slept. Nikki you are so articulate and I think the addition just tells it as it is and adds a personal dimension to the form. I can't imagine how difficult it was to fill in. Hope to see you tomorrow x

    ReplyDelete
  2. I agree with Linda -you write so well ! wish I could reach out and give you that hug-take care Jan

    ReplyDelete
  3. My dear Nikki - a big reach-out HUG for the weekend from the other end of Burnley Road!

    It's both humbling and sad to read your blog, but heartening to know that you're getting so much love and support from friends and family - and from therapists and others who are there to give practical guidance and support - to enable you to live in your own "nest" in just the way you want.

    Yes - you do deserve it! And, yes - keep letting us know how you're feeling.

    Sending you love and HUGS - will speak to you again soon.

    Jenny xxxxxx

    ReplyDelete
    Replies
    1. Thankyou for the supportive comments, as always.
      My love and hugs to you. Nikki xxx

      Delete