THE DAY BEFORE I GO TO GLASTO

My friend Laura had borrowed my cases.. So I panicked that I didn't have a case ! (I had given away all other cases when I downsized, realising that I wouldn't be going on any/many? more hols).

 Now you say why didn't you simply text Laura... well she has mob probs and is waiting for her partner to up-grade her phone, then she will have a good mob. BUT this wont happen for about a month.. so until then I contact Laura via Jess... so last night I txted Jess.. "Please remind Laura to bring bags when she comes tomorrow"  I got a response that Laura was in bed ... ill. So this morn, still without bags, I sent txt to Jess... How is \Laura.. a friend will collect bags if she is still unwell...

No response... My anxiety rose.

Sharon , my support worker, who is very laid back, tried to calm me by saying that we could make a list.

No I said, the way I pack is to go through the day deciding what I need for each part. But on this occasion we will also need to make a list of those things that are to be used then put in last thing... eg night stand for catheter...

So I decide at least I can do meds... put six of each pill in a box for night or day. It was then that I found I didn't have enough of some meds as they had been changed.

So I rang Dr and asked if meds were due to be delivered.. Ask the pharmacy... Rang pharmacy.. explain I'm short and about to go away... why? Where.. Glasto... wow ! ( Ive taught one of the assistants in the pharmacy and the daughters of another, so they know me... OK we will send them up today..

Richard arrives with hire car/van. I become more anxious when I say that hoist needs to be available in case I need the bathroom. Oh it's OK he says ,you'll just got off with Anne.. Ah ! I now realise, and this is what stresses me, that they don't exactly realise the extent of my disablement !! OH Dear!!

Physio arrives 30mins early and starts to teach Sharon how to massage my feet.. (Great but I know that if she stays for the whole time the my lunch of egg and waffles wont be cooked.. and I had only a few strawberries for breakfast as the toast was to difficult to eat..... and I was getting hungry !

Anyway few minutes later as we are deep in our massage lesson and I am in fits giving points for each person... my mate Barry arrives. He makes coffee and then watches entranced.

The lesson over Physio and Sharon depart. Barry makes me a lunch of cheese tomato and crackers and we have a chat.

2:00o'colck and Laura should arrive... Panic now truly rising !!!  But a few minutes later she arrives ... WITH BAGS !!!

OH I for got to say that the man to mend bed should have arrived by this time... so no clothes could be laid out... Laura had a coffee.... me a glass of wine... the stress was about to show. Just at the end of the wine the man from Yorkshire Care arrived. It was an easy job to fix... the motors had gone... WHY? Ive only had the bed about two or three months !!

Anyway bed fixed, Laura followed my instructions and most of the packing was completed !

Sharon arrived for visit two. There she said , I told you all would be well !!!!So the next hour or two was spent watching news,talking to my girls and answering texts.

I have had so many texts from friends wishing me well for Glasto... it has be amazing. Sharon commented, Is there no-one in West Yorks who doesn't know that you're going ? !!!!

I ate some dinner and am drinking red wine too. I now have to finish off the list with Sarah, night Carer and also shower... the last till Monday !!

There must be something I have left out... this was a truly manic day... but I hope you get the taste of my day.

My breathing has become worse as the day has gone on... But , Hey !, that's living with MND !

( Sorry if the garammar in this Blog is off no time to draft.... I'm finishing packing, I'm off to Glasto tomorrow you know !!!!!

HUG ME, I'VE GOT MND

C ARERS

People are all different, even people doing the same job.
Well I already knew this, from the differing personalities that were teachers in my schools.

So why does it  so surprise me that carers can be so different.

I have  a super team of four from Scope. But they are all so different and have such differing interests and skills. I get on with them all in different ways. They are all kind, all try to get basic tasks like managing the hoist correct and all , I feel, have my best interests at heart.

One of them has young children,and is most definitely someone who enjoys house work. eg She loves ironing and does it beautifully.

The second is very shy and lacks some confidence. It is so clear that she wants to be perfect in all she does. She takes her time to be just right and asks frequently to check that things are done as I would wish.

Number three is more of a clown. ...  BUT...She uses her common sense and is so funny. She is a speedy worker and even managed to clean all the windows in record time... she loves music eg Radio 2 and sings along.

Number four, today's carer,, has done the same art course as me , but she went on to complete to degree level. We have lots of art-related things to talk about and she doesn't mind doing mucky jobs like cleaning my brushes. This so helps, as it takes me an afternoon and I end up wet and making the bathroom filthy ( I can't reach the sink).

So differing personalities all adding value to my care.

I was so worried, when dear Laura left, as to whom would replace her, but this team seem great AND I still see Laura every Wednesday... so care wise.. fingers crossed... I feel Ive got it made.

HUG ME, I'VE GOT MND

CONTINUING CARE ASSESSMENT

For some time now the NHS has picked up the cost of my night carers.. ie 60% of the care package budget.
At the review,a few weeks ago, the NHS agreed to pay 80% 0f the total cost and also agreed that another assessment would take place very soon. Indeed it was soon, 10days later.

At a previous review I sat with my Social Worker, a member of Scope staff and a man do with funding. I was very annoyed with the man as he came in and sat behind me... I eventually moved. But how rude to sit behind someone in a wheel chair.. well to sit behind anyone actually, ..........well except perhaps at the pictures !
At that meeting 2 out of 3 people wanted me to sign a  care plan off, which basically meant that I would get 1/2 hr extra time !! No B....... Way !!!

It was difficult for me, three against one so I determined that at any future meeting I would have some support.

Thus it was that my lounge was rearranged to make space for at least 7 people ! I was expecting the NHS person, the social worker, physio ( at my my request) , my friend John and my carer !

It couldn't have been a different meeting. All the people were very supportive as we filled in the long document. It did get to one point about communication... I communicate well... but felt the need to explain to the NHS woman that though I appear bright and articulate inside, I'm actually very frightened. Being a good communicator doesn't mean that you are glossing over feelings but I thought they may feel that I was just fine !Anyway at this point I broke down. My breathing and voice came out in gasps. The group showed nothing but kindness and support.

Then I composed myself, and eventually we got to the section on mental health... I said I had depression ... yes said NHS woman, you are bound to be depressed with this diagnosis... No, said I, I have a long term diagnosis... she was surprised and that got me another high level of need. In the end there were 5 high levels and though she has to take the info to the panel next week she said it would all be fine. I would have 100% NHS funding. In fact it means now I don't have to jump through hoops !
At an instant she increased my daily care by 1 1/2 hrs per day.

I feel this went well... but if only I had known I wouldn't have had to re-mortgage my house by so much.... but what the hell !! it now means that I can have any treats I wish and not worry about money.

I wonder how many of us with MND have continuous care... was it an ordeal for you? Was it difficult to get?

I feared the whole process, because every other step of the way has been so difficult and every step taken so long to get resolution............. But this was easy, and also means that I am now getting the care I need..... Unless the govt steps in !!!!!! Fingers crossed !!!

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

MUESLI IS OFF !!

OK , It has been weeks since I last Blogged.
A big thank you to all those who kindly contacted me to check if I was OK.

I am OK, but the MND is marching on and I simply don't seem to have had time to fit in this writing. Shame I hear you say !!!, well some of you.

Re my Blog.... I had built up a good set of daily readers and this has definitely diminished. So please do tell your friends that I am back.

Such a lot has happened. and so here is my news in brief..

The very, very. best thing is, that, I am having a new wheelchair... I have a benefactor... and I am sure s/he would not wish me to go into the detail. (I shall refer to my benefactor from now on as he , as its less to type !)In fact he is not actually buying the wheel chair, (£7,500).My benefactor is buying one of my paintings! I have to send images and sizes of some and he will choose....

Perhaps this one?

Or this one... it's very large.....

This person also collects art. So if he hangs my work, it will be alongside prestigious artist !!
How wonderful is that? I feel so very fortunate.

The chair is ordered and should arrive in 4/5 weeks time.
Its purple... I'll say no more, but, be sure when it arrives you will be inundated with photos!

As for my health...., I'm being measured for a collar next Tuesday and should be going into Hx Hospital soon to have my oxygen levels measured overnight. I also have the first appointment with the gastroenterologist re a PEG, ( feeding tube).

So you can gather for yourself how my health is.

Other BIG  news is that ,
I am going to Glasto ! More tomorrow !

Oh and the title., Muesli is off ......ie,the menu.. I had a major choking issue yesterday and struggled to breathe for ages.. then started shaking with the shock. There are other things that I have found I can't eat either lettuce, crispy bacon and a few other things.

Ive tried pink hair (but it washed out), and I bought an ice-cream maker. Wow, how lovely is the ice cream... and good,......... just the pure ingredients that I know have but in.

My care plan eventually came into being.. the transfer from the emergency team to the Scope team has been difficult. Getting to know new people and having more freedom as I have support , and can , for example , have a coffee whenever I wish, or go to the bathroom.
It's sort of like being let out of prison.

So that is a short version of my life in the last three weeks. I'm sorry the detail is missing but I will write more fluently in future.


HUG ME , IVE GOT MND.