GLASTO THE FESTIVAL 3.................ESPECIALLY FOR PEOPLE WITH MND

II heard of my diagnosis at the beginning of December 2011...

It was on a routine visit to my GP re mu Thyroid levels.... It was Friday evening, late. I had no-one with me... my GP said she had had the results of my MRI and electromyography tests and it was confirmed that I had MND. She gave me a print out of info re MND which said that life expectancy was 2 to 3 yrs ...
How horrified was I .
I decided to wait til the Monday morn and ring the neurologist... clearly he was horrified that I had been told in this manner...
He then made an appointment for approx 12 days time,
I decided to use the time t think about my future with MND and to google as much info as I could.
Fully armed with info and a plan for my future ,I went to see the neurologist.
He was kindly and a support plan was put into place immediately... however. as Christmas was coming up this didn't swing into action till Jan. I did , however feel supported and knew that this time of thinking was good.
 It was only then that I told my dear neighbours, then my very best friends and eventually my girls ..........of the diagnosis...............
So how did I cope?......
I decided that I would try to live my life as I had done. always. I recognised immediately that my life would involve having carers eventually, and \I hoped that they would take over the mundane  and difficult tasks that would use my energy, allowing the special events in my life to still occur.
 Of these painting would be a priority.. It is................ and I still do it.. I have an exhibition of my work in October this year........
I had a wish to go to the island in the Bahamas , where I lived when I was a child........... but soon it became obivious that this would be impossible.
My next wish was to go to New York...... my friends said they would go with me......... but this didn't happen........... sadly.................
 my next two wishes were to go to Glasto 2013 (especially when I knew the Stones were playing !) and to go to Whitby via Yarm (where I used to live).

So to Glasto .......... any trip like this takes planning. I hired a big enough car to take myself in wheel chair and all the equipment. This included  a tent, hoist, commode and luggage. The luggage included yellow bags, dressings, scissors, bedding, warm clothes ( I'm always cold ), tena lady, gloves and all the normal stuff like torches...
 I had organised that a hospital bed would be delivered to the site.
I must admit that the people on the disabled site were of a great help. (Lots of people on this site hire vehicles.. they are probably people with walking difficulties rather than people like me , and you, who cant weight bare and utterly rely on a chair. ) OH I organised that our tent would have electricity, IE to charge chair during the night and the hoist during the day and also to power the bed..

So planning................. is of the essence,,,,,,,,,,,,,

Also the choice of carer is important.... I had a choice of two........... the one I chose was a nurse (daughter of the woman I always have gone to Glasto with). I knew she would be able to care but wouldn't be phased by the enormity of \Glasto ,as she had been there before.
My other possible carer would have been great as a carer............ but , as she hadn't ever been to Glasto, i feel  would have been overawed by the whole place, by the sleeping in a tent, and by all the practical adaptations that have to be made in such a situation.

I think its important not to cling to your carer in outing situations. Thus after breakfast and dressing me my carer went off... returning at 2;:00 so that we could go to the Pyramid by 3:00.
There I stayed till midnight .. \My carer discreetly emptied my catheter.. I was surprised that people didn't stare.. She kept me in water and food.

It was  a great shame to me that I couldn't mooch around the site as I always had done... but this was too difficult.. The roads//tracks were so rutted that travelling in a wheel chair was mega uncomfortable........... so you do have to make compromises.

HOWEVER  I was only too happy to be on the site and to see some of the bands... especially The Rolling Stones.

So you see ,you can do special things with planning and with an element of compromise..
 its sad that compromise is past of our lives , but sadly it is.

I do hope, like me, you are able, want to, do things that others say are soooooooooooooooooooo difficult........ THEY NEEDN'T BE.

HUG ME , I'VE GOT MND

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

REDUCED TO TEARS... AGAIN... WHY? ... READ ON ...

So, Alarm set for 8:30, to leave house at 10:00... get to Tod at 10:45. (Yes, it takes that long to exit house, get into car and drive the 15 mins to Tod).
My plan was to go round market and buy some flowers, then off to Boots to get a lip gloss and some moisturiser... all treats ! YEY !! Then , off to dentists at 11:40 and nails at 12:30. (being done a few days early so that I look special for my Birthday on Sunday.)

Having been shut in by snow for a few days I was sooooo looking forward to this outing.

Dressing this morning was really difficult. Getting knickers on a major event !! I managed without crying, but only just. I really do need help to get me up , dress, and even to get my breakfast, ( I'm always starving in the morning , and a boiled egg would be great... but only ever manage cereal !)

So Coffee and cereal ... but milk short so rather dry cereal... Tesco due tomorrow...

Leave house on time.

Push button to open WAV (Wheelchair Accessible Vehicle )... no response ..... Move closer.. NO RESPONSE !!  

The rear door entry simply would not work.

I tried and tried from all angles.

Eventually ,it dawned on me, the reality, it simply was not going to work............ 

Now, here it is important to say how I feel about the dentists. This was my third attempt to go. Once cancelled because of snow , once cancelled because the back door of the Green van (WAV) , wouldn't close and now the door wouldn't even open !!!!!...........  AND the dentists had bought ramps especially for me to enter.........

So I was reduced to tears ! The sheer effort of dressing this morning, the sheer frustration of the back door of the van not opening.... the sheer stress of living with MND.. and it being so difficult !!!!

What should I do ? I simply couldnt ring dentists in my weeping state.

I rang Liza, my eldest daughter, and having reassured her I was ok, that I was weeping because of the van, asked her to ring dentists.... she did... then rang me back........

BUT  I was totally wiped out by the efforts this morning .. both sad and disappointed... and ,     actually,             Bloody Mad !!!

RAC came. The reason this time that the door wouldn't open, was that the battery in the zapper which controls the rear door entry, was flat !!!

What else can go wrong???????

This was so simple, and in many cases would be a laugh, but, in the context of my troubles , became the straw that broke this camels back.

Luckily my mate Janice was due to arrive at 2:00 ish.. we had a great chat.. then Michaela (Physio) came at 4:00 ,and massaged my feet....... wonderful !!!

So , I'm calm now , but still wondering about how getting my knickers on tomorrow will go.
This disease is simply horrid !!

HUG ME , I'VE GOT MND

IT''S WEDNESDAY, CLEANER DUE TODAY

I woke at 4:00 this morning. I tossed and turned and eventually got up at 5:15 to make a cup of tea. This was no easy decision. 
Remember I have to put on foot support, move to the bottom of the bed, balance, move into chair, unplug , turn it.. go to loo (inevitably when you wake up), get to kitchen. Stop chair, stand, balance, fill kettle,not too full  !!, as then its too heavy, put on, reach for tea bag, fill cup, back to chair, move over kitchen, get in position to open fridge for milk, which requires I turn chair around, Milk in... carry hot tea carefully to bed room, pop on window sill as I balance ...moving along the cup with free hand. Tentatively get cup on bedside table. Drink tea. Watch sky get brighter, fall asleep at 6:30.. wake with alarm at 8:45.

Same process again, but this time I put coffee in cup!! and don't go back to bed. 
I watch the cows in the field, and eventually get cereal, eat some of it and manage to load dishwasher. ..... Four trips to utility room, each involving a trip to turn in the hall, the right angle turn to the utility room cant be manoeuvred in one. Each piece placed involving a balancing act....

Shower time. Got into robe and was just about to turn tap on when I realised I was in the wrong chair! In swapping chairs I got them totally stuck together, It took about 10 mins to do the transfer!!

Shower, hair wash. Clean clothes. Getting clothes out isn't easy, as yet again I have to balance, whilst reaching for a jumper I have to catch myself on the wardrobe door , to prevent a fall,but it swings... I thankfully land on the chair!!!!!!

Dressed, another cup of coffee.. same process.

I rang David re car. He answered (YEY! ???) said be was getting in touch with man at Motability. He would ring back.  
Rang Hosp transport to arrange transport for Thurs next week as I'm have a 24 hr ECG fitted.

I rang David, he had had a missed call from Motability, would ring them back then get in touch with me. 

NO CALL!!

And now we get to 12:30. Tracy, cleaner arrives. 
1:00 Tesco man arrives. As he picked up the 5litre bag of cat litter it split.. It bounced all over the kitchen.. into every orifice!! He got broom and was sweeping up when Tracy joined in with a dustpan and brush.. this caused further eddies of cat litter... what a mess!!! But the funniest bit of the day !!

Tracy did her stuff and as she was about to go the MNDA woman , Carol, rang back. She seems to be a terrier.. and is taking over sorting this for me. Thank goodness, I so need an advocate.

I then went to feed Meggie. I couldn't find her food tray. Eventually I saw it had been moved to the utility room... WHY?? 

It took some minutes to pick the bowls up, and I spilled her water on the floor and down my clean ( this morning ),  trousers!!!!  V V upsetting

This evening I have eaten. A frozen asparagus risotto, to which I added some salmon.

When I went to turn bedroom light on and close curtains, I saw my water mug by my bed. Why did Tracy move tea mug and not water mug??? WHY ???

Im feeling, sadly,  stressed... 

BUT tomorrow my easel and art stuff arrives,...... its been in store.

Normality ??? Hope so.

HUG ME, I'VE GOT MND

SHOULDN'T THE WORLD STOP....?

I remember 31 years ago when Eleanor Rose ( my middle daughter) died, I went out to shops and did all sorts of "normal" things. But it was such a strange existence, people didn't know what I had been going through, didn't know how deeply I was grieving. I felt then, I think I should wear a badge saying... my baby died on January 6th. She was 10 days old." In other words I felt the world should stop and take notice. But , of course, it didn't . The grief continued and very gradually I came to terms with the terrible  , terrible,  event of the death of dear baby Eleanor.

I guess I'm writing about that now, as I sometimes feel, Should the World Stop.. but actually life goes on.. and I continue to order each day. Visits from medical people to help me, visits from friends to whom I appear normal,( well as normal as anyone would in a wheelchair, who stumbled and walks with a strange gait.)... Is this how I want it to be?
Some days I simply don't know. The world continues to spin, but I feel out of sink.

Today I had a visit from friends from Hertfordshire, we first met on a camp site 26 yrs ago. We have kept in touch each year at Christmas and in the last few years met twice.
As they left I was brave. But part of me thinks , will I see them again? But  I probably will. The progress at the moment of the MND is slowish, but I know it's marching on. I will see them, but how will I be then? I simply don't know.
Each parting, especially when I see my children, leaves me with an emptiness, what will I be like next time?

I do try to be brave, as much to protect others as myself. But it is hard. Should I behave like this, or just let my feelings go.
I want to tell people that I love them, care for them and that I will miss the futures we may have shared in some way...

In a book I am reading, Tuesdays with Morrie, a guy with ALS goes to a friends funeral. He hears all the wonderful happy, loving things said about his friend.. comes home and thinks... what a waste... he didn't hear that.
It's no use saying kind loving words about a person when they're gone.. say them now.
Kind loving words may make me cry, but it will so help.

I think I knew this deep down, when I first entitled my Blog HUG ME...  When you are dying you need the love now. The world for me isn't going to stop, I shall continue to be as me, as possible. I shall go out as much as possible, but exhaustion does limit this. I shall paint, and I will try to be as "normal" as possible... but I carry this awful burden.  Some people take the stance (perhaps to protect themselves?) ,..... oh anything could happen... you could be here for years.
I won't. But I want/need  the years that I am here to be good ones.

On Saturday I went, yet again, to look for carpet. It broke my heart to know that a wheelchair on a wool carpet will wear through and thus I must have a polypropeline one. I love wool. It's warm, it's comforting, and I feel  it says something about me as it's natural and so special. What a silly thing to get upset about you may think. But I have had to make so many compromises.. my house now on the market, unable to get out without help, unable to get to the door quickly, not standing facing the shower, wearing a device to keep my foot from flopping, half filling the kettle so that I can lift it, ready meals   etc  ... and this is only the start. I am adapting to my life and my spirit is strong, but I need to tell you all ... this is hard... it's so so hard.


HUG ME, I'VE GOT MND