WHEN IT WAS GOOD IT WAS VERY VERY GOOD, WHEN IT WAS BAD..........!!!

OK sorry about this but my day started with  toilets....... again !!!

I woke at 6:15 needing the toilet and Sarah (night sitter ) took me. She said would you like a cup of tea? I thought that would be good and so didn't go back to bed immediately. By the time I did need to go to bed I was so cosy, and watching news that I thought I would just stay up. Especially as I heard that the Rolling Stones are confirmed to play at Glasto.
I soooooooooo want to go. I know it will be my last time. But WOW!!!! Energy redoubled to seek hiring of suitable equipment, especially a suitable bed. Think the rest is covered.

At 8:55 I needed the toilet again. I thought the carer would be arriving very soon, so I got myself on,knowing that I wouldn't be able to get off.... but whats a few minutes wait??
A few minutes turned into 1hr and 20mins!!
OK maybe the person before me was ill, or even dead. But what I found unacceptable was that the carer arrived and asked how I was. I said not good I've been here 80mins, please get me off. I'll just sign in first she said. No , I said , please get me off , I'm feeling faint and my legs are wobbly. Off she went to get gloves. WHY ??? after all she was only touching my back and left arm ! THEN when she returned ( me still on loo) she saw telephone And Bloody-well signed in !!!

Enough  of the carer. I knew friend Barry would come up soon and get me some breakfast.. toast and coffee.  He arrived and did. He also stored some equipment in the garage to make way for the hoists............

OH I forgot whilst on the loo I got a call from the NHS delivery people to say they would arrive in an hour. I said make it that hour, I'm stuck on toilet and need carer to arrive. They did arrive when I was released, and in normal course of events would have been getting dressed. But I needed to let them in and show them where the hoist was to go. No, said carer, get dressed first. So that's why I was speedily, but roughly dressed !!! So then I spoke to NHS  men and realised only one hoist had arrived, they said they would return in the afternoon, and they did.

Next thing phone call from Social Worker. The panel re Continuing Care had met yesterday and the NHS will pay 60% of my care costs. This is to include a night sitter plus and extra person for 30 mins to hoist me into bed. 1 1/2 hrs each morning to get me up dress , breakfast etc. 30 mins lunchtime, 1hr tea time and 1 hr per week for cleaning !!!
Whilst I am grateful , I will still be paying the maximum £204 per week as this package is expensive,,,, ie even the 40% which with be paid by social services. There other problems. The social worker put in the plan that was made for my needs a month ago.... and things have changed. I would much prefer a long morning and no lunchtime call. Also, the council have an arrangement with a Care Agency , so it might well be that I cant have my present night sitters, and I get on so well with the four I have now. It seems important to me that I have continuity. BUT the worse thing is that, if i have to go to bed when the hoist person arrives, my bedtime is set not by me but by the council Wheres the choice here? How eroded is my independence ? !!  Also 1hr for cleaning !!! So I hope the two morning people will do some cleaning ?? When I asked this the social worker said that they would clear up the dishes but didn't think they would do more !!!!  One hour cleaning and laundry !!!!!!!

Barry went and I made some essential phone calls.............. all answerphones except the one to the Urologist s secretary.... she can see no reason why I cant have Supra pubic catheter. but the consultant is ill ( which is why I saw the unpleasant man, who wont be involved again, he was on loan from Huddersfield ). But proper Consultant will be back on Tuesday. I await a phone call.

Whilst I was doing all this I decided to record my own answer phone message. Well I've done it, but am quite horrified at the depth of my voice, and how it has changed generally.

Michaela and Bethan, physio and OT, and we had great fun (NOT) playing with the hoists. The best one gets me to a standing position. Its rather like water skiing !! Than goodness I'm better at the hoist than I was on my 3-ever goes at water skiing !!!!

My carers arrived for tea visit. One of them is a good friend and brought me some chips. I managed to cook some steak at the perfect time to have the two together.

A calm evening, thank goodness. I've done just over an hour of painting. (All I could manage as my arms ache) BUT it's progress.

So the good bit , well The Stones, of course, and the chips ........... and the rest of it ranges from not so good to horrid !!

HUG ME, I'VE GOT MND

TODAY I FEEL SAD.

Today I feel sad.

MND certainly is a  progressive ,and for me, progressing disease.

This morning I couldn't stand , as I usually do, when getting out of bed and doing the transfer to my chair. My night carer had to help me.

Then, after she left, I needed the toilet. 

I couldn't get off. I tried on and off for about 20 mins, during which time I cried. 

Eventually I rang my neighbours, who fortuitously had popped in yesterday with their phone number!

So they got me off the loo! and \Ive spent the day trying to be positive, but not really succeeding.

I feel that if I were to go into the studio and paint, it might help. But my creative mind is blank at this moment.

Sorry to be forever moaning, but this is a diary of living with my MND.... for the public to read,if interested, for my family now and in the future. And you can't always be positive about things when you have MND. Because the reality is that it is horrid, horrid, horrid!  And mostly we do look on the bright positive side, but today, for me, that's a big ask.

Lets hope tomorrow brings some sunshine and joy.

HUG ME, I'VE GOT MND 

HABITS !!

Two items of note !!

I gather it takes only 21 days to form a new habit.... SO, Lucky ME !!! only 10 more days and I'll be a non smoker !!! (Courtesy of pneumonia).  LOL !!   BUT ! Do I want this as a new habit??????  Well it would be sensible not to smoke. It would mean I don't have the stress re the house smelling, It would save money... lots !                BUT. Sorry, I actually LIKE smoking... what do I decide ?? Watch this space .


Second habit...maybe not quite a habit ... well you see....... I have been in many homes in my life where there are books by the toilet. I've never understood this. I've always gone to the loo, washed hands , out.... Never saw the need/desire to linger .......  BUT........ As I sat on the loo on Saturday... ( too weak to get off ), I did decide that perhaps a book or a sketch pad might while away the time. I realised, at 10:50, that I wouldn't be able to get off, and knew that my friend John would /should arrive at 11:20... so I sat. Quite stressed and thinking of how I might de-stress. SO, suggestions needed, what would you read on the loo, which would de-stress you whilst you await help ! Oh, and bus was on time, and all was well..... Thankyou.


HUG ME, I'VE GOT MND.

MORE ADVENTURES IN THE LITTLE GREEN VAN !!!

After a weekend full of fun and millions of visitors, I found myself with just Eliza and my two grandchildren (aged 3 and 5). All  relatively calm and peaceful. 
Splash came in the morning . The children popped off to the playground mid morning and had a wonderful play.
In the afternoon we had decided to go to "Flying Saucers", in Hebden Bridge, where you can paint pottery.
I rang for a taxi for them, having decided that I would go down in the green van, so that I would have full use of my wheels in HB.
The taxi firm, thinking I needed a taxi for myself, were very apologetic , saying the man with the wheelchair taxi no longer worked in HB. In this instance it didn't matter, but, in the long term it does, as any possibility of using a taxi is gone . And I must say, that after the last RAC visit ,I was about to throw in the towel and commit to using Taxis!!  OK, I could get one, but it would come from Halifax, at a probable cost of £50 each journey ! So I guess I need to investigate any community transport help......

Anyway on to Flying Saucers... all great fun !

Liza got a taxi home and I went to green van to return too.
A car was parked behind me, leaving not enough room for access.. despite the sign saying Please leave 2.5 m space !!!
No matter, I thought. I sat in the sun, had a cigarette and waited. Man and children eventually came, got in car and drove off !
Now, there are those of you that would say I should have had a go at him.... well Im sorry, I couldnt ! I knew that if I tackled him, I would be the one ending up in tears !
I got in. Car wouldn't start.... after a few goes I realised that I had , in error, locked the steering! RATS!!!! So sorted it.
Went to start car.. it didnt ! Several goes !!! Then I saw sign saying depress brake.. ! AHHH ! BUT Brake was on ????? !!!!!
I then realised that if you do anything unusual, eg undo the the steering lock or even ( and this is true), open a window !!! YES.... a window !!!! The over-ride on the systems are re-set to manual!!!
In this case it was the braking system. Three buttons... one of which I found out was a horn ! (You'll have guessed how I found that out !).... anyway, eventually brakes were working, I was set to go , car started ! YEY!!!!!

Up Keighley rd, OK. Sharp bend into Billy Lane. Difficult manoeuvre when you accelerate and steer with you hands... But road joining from Billy Lane, was clear.. I swung around ... perfect... except a horse box and a Tesco van decided there would be plenty of room and coming towards this junction didnt pull up short and wait, ( as most do ), but rather  moved to the corner ! RATS!!! So I had to mount the pavement.

Made it home for a cuppa !!!

PS Other issues as yet , unresolved, happened yesterday... to do with my very favourite issue of , "Not being able to get off the toilet"... When this is resolved I shall Blog the whole sad tale.........

Until then,

HUG ME, I'VE GOT MND 

HEADLINES

MARK ROTHKO...   On the news today a guy who had damaged a Rothko painting was given a prison sentence.
I saw these Rothko paintings. The are beautiful and gave me the feeling of peace and tranquillity that they were aimed to.
How could he do it. These images are sooooooo wonderful.

PIZZA I've always had a prob cooking pizza, the edges burn. BUT, tonight, for the first time ever , I did it. YEY!!! Perfectly cooked Pizza and wonderful salad.

WONDERFUL SALAD. Do try this . Chop an orange. Add salad vegetables, especially celery and essentially onions. The acid in the orange sort of pickles the onion.. finally sea salt and a small amount of Olive Oil... simple change from vinegar... but so much better... YEY!!

ASSESSMENT. Social services came along today. I asked at what point does health-care take over..  not if you have difficulty showering, not if you have difficulty cooking a meal, not if you are too tired to eat following making a meal, not if you have a problem dressing, not if you have pain in bed because you don't turn over, not even if you have a feeding tube... but only if your feeding tube is troublesome !!!
I await assessment results.
I know I need more help... but what will the assessment say.
The max you have to pay is £220 per week.. with my rent that's £1480 per month... !! EXTRA! Lets not go there.

OT. Contacted me re visit for toilet adaptation due tomorrow... it might not work.. be warned!!! After waiting  two weeks plus 1 day, because there were not two people available to transport possible toilet riser.. I'm totally angered by Calderdale stores team.... I await tomorrow !!

PROF SHAW (MND world expert/ wonderful, amazing woman): Went to Sheffield yesterday. Prof Shaw incensed by my toilet predicament. Will write letter if not fixed. BECAUSE : If a person with MND breaks a bone, the disease will undoubtedly advance....
I am sooooooooooooo at risk at falling off toilet.. and never mind the indignity !! So watch this space.

GETTING BETTER :Having been ill for a week with stomach problems, I'm now nearly better, still a little pain..
BUT I am so in FIGHTING form !

DO WATCH THIS SPACE.... THE MND CHARTER SAYS EQUIPMENT SHOULD BE PROVIDED APPROPRIATELY AND IN REASONABLE TIME............  Toilet... essential !!! Chair.....essential!!.........Care........ essential...... ! so please do watch this space.

Contact your MP. I have. Make them aware. MND is special because it is progressively degenerating, time is of the essence..... we cant wait for equipment, we need it NOW !!!!!!!!!!! Please help, not just me, but anyone with this horrid disease.


HUG ME, I'VE GOT MND.