OUTSIDE MYSELF

I had a home visit from my psychiatrist today. He completely understood why I can't see him at the medical centre until I get an appropriate wheel chair. (see para after this re wheelchair.)  The design of the splendid new Centre in Todmorden is so daft, and inaccessible for people who have difficulty walking. There is a choice of ramp or steps... But the ramp is quite steep and long as it has to rise to quite a height. It therefore would take two people to push me up to the entrance. It is likely that I might be able to find two friends who would be willing to do this.... However, why should I? It's simply not right that I inconvenience people in this way.
..... Anyway, I have been feeling as though I am looking down on myself and watching all that is happening to me. It such a strange disorientating feeling, and makes me feel so unreal. I'm watching a video of myself.. and yet I'm here.... As I thought , and he confirmed, this feeling happens when people are in extreme stress , it's a coping mechanism. It doesn't make it right, or make it better, but it's good to have an explanation for this horrid, weird feeling.
He suggested that I might need some respite, and I agree. The few days I had in hospital were such a break. I felt safe, and anxieties dropped away for a while. food came without the battle in the kitchen , I could shower safely, support was there... I could easily have become institutionalized!

Anyway I have decided to talk to a GP re a referral to Overgate Hospice. Even if I just spend the odd day there,I will have a meal, enjoy company and be able to have a safe bath... it is so long since I was immersed in water. I wouldn't wish this every day, but it would be such a treat every so often.

The other advantage of the Hospice, is that I think that is where I wish to die.. I need to be secure in wherever the place is. From what I have heard people are so caring, and the atmosphere is positive, even though all people are terminally ill. The other major factor is, that, I understand that families are supported as a whole. It is important to me that my girls and their husbands are supported when I die. This could be the right place for me to spend my last days.

.....................................Wheelchair ,update... (adding to stress). Next Friday will be 6 weeks from when I was given the training for the outdoor/indoor wheelchair. I was told I would get it in 4 to 6 weeks. I thought I would ring today to see what was what. What I did find was that it actually wasn't ordered till 2 1/2 weeks after the assessment! This is to do with budgets!!! So now I have extra time to wait..... more stress..
........................................And yet more stress.. the money being released from the sale of my house, which I will have upfront to get the adaptations done on the bungalow... well the relevant  people (from sheffield,  don't ask!!!)    sent a form to fill in... no problem. BUT I have to send in my house insurance. This is fine , but they expect it to be for 200K, the sale price, yet a rebuild price is only about 150K, so now I have to adjust insurance.... another stress... I need a secretary!!!!!


Tomorrow I go to Sheffield to see Prof Shaw, to get the results of the tests . 
Watch this space.. 
but maybe no news tomorrow as the trip to Sheffield is exhausting, so I doubt that I will Blog tomorrow night.


HUG ME, I'VE GOT MND

STARTED BAD.. ENDED GOOD !

Started the morning with TERRIBLE back ache. Michaela came and did massage and then with 2 paracetamol was able to face the day.
I actually didn't shower and dress till 5... but in the meantime...
I did loads of paper work. In truth most of it was paper recycling. But I did fill in all the forms for the car, now I have my license back.
Richard came at 2:30... and WOW what developments. It looks as though it will be 8 weeks before I get in bungalow, BUT... The doors are chosen, I have to choose tiles for bathroom , can go to Classic carpets and  choose carpet, ND need to choose kitchen too!! YEY!!! He has planned to have kitchen done with lower worktops, ie access ible for me in wheel chair.   SOOOOOOO Pleased about this.
Then I got a call from SAMS... it is very likely that a ramp will be provided to allow me to continyue volunteering in a wheel chair...

OK all this will take a few weeks but THE END IS IN SIGHT!!!!

Tonight, ( after I showered and dressed!!!) Steven and Ester Cooper took me to the opening of the Tod art show... ie the HND , Access, and BTEC people.  I was very impressed by the work done with the BTEC students. The room was so alive... congratulations.  Steve pushed me round and was able to bang me on the back at the right spot when my swallow went wrong.. Thankyou Steve. Dodgy moment there! Sadly I have had a few of such moments, is it the swallow muscles getting weaker... I think it may be . It's frightening for me, but not too many times so far. ( Praise be).

Tony was brilliant and has said he will come round soon to give me a tutorial... We agreed I'm Nikki artist, not Nikki MND...YEY!!!


HUG ME, I'VE GOT MND