GLASTO... HERE I COME !!! ?

Glasto here I come...!!! It's taken a lot of planning.

For some people, facing a death, they wish to do extravagant things like going on the QE2. For me, my QE2, is to go to Glasto, one last time.

For the last 12 or so yrs I have gone... and loved every visit.
My first time was with Anne. She had gone the previous year with her husband Richard. He hated every moment and thus I was asked to go with her.
My very first time ... we went after school on the Friday and missed Coldplay we also had to leave on the Sunday afternoon.. I thunk we missed Rod Stewart... but I thought it was brilliant... and well worth the money.

We were both working, Anne was one of my staff... eventually I was retired and Anne got permission to have a day off from Govs. So Anne would arrive on the Fri afternoon, I had already set up camp, ... and she had to leave on the Sunday.

One yr I went alone... this was OK but not as much fun as with my friend.

Thereafter we went together, and as I had medication which required refrigeration, I was allowed to stay on the disabled site.

The disabled site is amazing. There  are two marquees. One for tea and coffee , chat, charging of wheelchairs and activities,   and another for complimentary medicine, such as massage.
There is also a proper shower.
It has always annoyed me that people who support those with the real disability have used this shower... I never have.

The site also has many volunteers who are so , so helpful.

So my plans.... amazingly, I had a dream, about a year ago ,that Michael Eavis knew of my condition and flew me by helicopter to the Pyramid stage to meet the Stones. This was long before anyone knew that the Stones were playing.

When I heard they were to appear I was overjoyed. Anne and I had decided that to get tickets in October was dodgy as I didn't know how my health would be.
Every year I have been the one to get the tickets... using Internet and endless phone calls.... It has always worked... but this year I decided we should use her link with the Eavis family... I'm not going to say how... but it worked and we have tickets.

THE PLANNING. Well this was mega.. First I had to organise transport.I searched the web and found I could get a large vehicle which had lock down for the wheel chair for £624 .It was booked.I needed space to carry a hoist, a commode and me in a wheel chair. I noted that I also need a bed. I have rented one for £225. It will be delivered and collected from the site. I also have to remember night bags and the holder, a spare day bag and all meds....
Keeping dry has been an issue, so I have bought a coverall , it covers my whole body including my feet. I will need to take clothes for warm and cold weather... the list is endless... but, also includes a box of red wine !!

My daughter ,Christina, contacted , Make a Wish, to see if I could meet Mick Jagger... apparently they only deal with children.. she then contacted Michael Eavis, but apparently the Pyramid stage is closed to all headliners... even those with MND.

So Ive spent a fortune. BUT it is a so very special event for me ! Wish me luck! I'm apprehensive now but also very very excited.. I'm following my dream.. paying for it , but hey, It's still a less expensive than the QE2 !!!

The Glasto team for disabled people have been amazing.. we have been given a pass for the transport to access the site and also there will be electricity in our tent.

This is my last big trip... I'm going to really enjoy it..

Please hope there will be no rain.!


HUG ME , I'VE GOT MND

HERE I AM !

Recently a number of people have contacted me, to see how I am. They have been worried, as I haven't Blogged, Face-booked or Tweeted for over a week!

I am somewhat humbled by your concerns, thankyou so very much.

So why haven't I been Blogging ? 

Well I have been unwell , a third UTI in four weeks, and boy does this bring you down!! Had I written, all the content, would have been to do with, yet again , toilets and bottoms !! And this would be far too much information! I've kept quiet and stored up a few gems for when I did start to write again...... and here they are !

Well Margaret Thatcher died. I had missed the news that day, but  was alerted to her death by a,  funny or tasteless (depends on your point of view), joke sent to me. Through this. I realised she must have died , then  looked on the news channel to check.

Because:  This isn't the first time I had thought she had died.
You see,   I was at Glastonbury on the day Michael Jackson died. It was a Thursday if I remember rightly. I had travelled there alone, and was tired after the drive As it was raining, I decided to take refuge in my sleeping bag and have a nap. I was awakened from a deep sleep by lots of chatter going from tent to tent. In my sleepy state, I heard the Margaret Thatcher had died....... but no I had mis-heard ! , it was Michael Jackson........  I thought my hearing was spot on.. Not that day !!!

I am having more carers now. All of the people are kindly and mean well, but sometimes just don't quite get it !

These two stories are to do with Onions!!

First: I was to have a potato and bacon dish for dinner and asked a carer to make a small side salad to go with it. I  would  bake it later. (Well I simply can't attune myself to eating at 5:30 ish each evening. ) So I said that  there were two tomatoes, a shallot and an orange (orange acidulates the onion and makes it taste yummy).
Off I went to the bathroom.
On my return I saw my salad: One tomato( not two), half an orange (why?) , and one whole large onion!! (Don't think she knew what a shallot was !! ) So as not to offend her, I said thankyou, chucked away most of the onion when she left ,and found the second tomato.
Looking back I cant imagine that I kept a straight face when I viewed that whole plate of chopped onion!!

Second: a rather more serious error to do with onions. As I said before , I frequently ask carers to do prep , to enable me to cook my evening meal. (I find chopping very difficult). So I planned to make a tomato sauce with mushrooms to use with pasta. I put out two onions and a few cloves of garlic and asked for these to be chopped.
Meanwhile I went to the bathroom.When  I needed help to get up,  in came the two carers . The person chopping the onions came in with her gloves on. Do change them, I said or, I will end up smelling of onions .
She oblidged.
Then helped me.
Then, back to the kitchen..
And I knew, I just knew....... "Have you changed your gloves? ", I said.
No, was the response.
Please do, said I .
She did, but obviously didn't understand my request.  I took the opportunity to gently explain that bathroom tasks and kitchen tasks are different and changing gloves is like washing your hands after leaving the toilet to do anything else. I beliieve she felt she was protecting herself fine , forgetting that gloves have a two way  purpose!
Later she did query my request ,but was assured that I was correct !

Once again , whilst these tales  may be funny and occasionally worrying, what really concerns me is the time when I may not be able to communicate my needs and comments quickly. 
I have noticed people do rush into tasks, without awaiting full instruction, and perhaps I do make them impatient as sometimes I cough between words or simply take a breath......  I have to trust, that, by the time that comes I will have a team of carers  who know me well and can be reliably trusted to do things correctly.

A step closer to Glastonbury.
This week I did manage to source a Profiling bed , which I can hire for a week and take to Glasto !

On Tuesday ,I am to have Double Profiling bed delivered . These are apparently reserved for bariatric patients . I am being allowed one, as I get so stressed in a single, feeling so enclosed , like being in a tomb. 

I had a need to , yet again, move beds around, getting rid of one of my doubles. But until the person who wants, it can collect, it needed to be moved to the garage to make way for the new bed.
Who to do it?
My friends have done it once.
Then it was moved back in by removal men.
Now there is an urgency to get it out again!
One of the support workers offered that her son would help. He would turn up in an hours time.
He did. Bed moved !!
How kind, I hadn't even met him before.

And another lovely happening today. A surprise visit from a friend, bringing smoked salmon, cheeses and lots of goodies for lunch, and we had a couple of glasses of champagne too !

Not a bad way to end this Blog? I hope you agree. 

HUG ME, I'VE GOT MND