THE EASTER BUNNY

Easter Sunday. They day when the fast ends and we have treats, like chocolate eggs.

I really enjoyed a chat I had with my Granddaughter , Sweetie Pie. We talked about the Eggs she had received and how there were some eggs in the garden.
AND, she said , Grandma , I saw the Easter Bunny ! Strangely she referred to the bunny as a she. I've always thought of the Easter Bunny as being a He.  Now, my grandchildren are bi-lingual , (my son in law is Italian), and I thought it might be because the Italian word for Easter Bunny is feminine. But no, it isn't.Sweetie Pies Easter bunny was Black and Brown.

Sweetie Pie was thrilled.

This reminded me of the time when we had a trailer tent, and for a first trip we went to Aunt Margaret's house for Easter. Aunt Margaret had a house surrounded by a large a field. So we went there.

At this time , Chrissie , my youngest , was just a baby and Eliza about the same age as Sweetie Pie is now. The  Easter basket, full of little eggs, which at home appeared on the swing each year, on this occasion , was hidden in the hedgerow. Liza went to search for it. AND at the same time saw the Easter Bunny! Her Easter Bunny was male and light brown. She has never forgotten seeing the Easter Bunny, and to this day, swears she saw him !!

As for me, I was never lucky enough to see the Bunny, But I did always have an egg search. Below is a picture of me on one of these hunts. I think I must be about 7.

I do hope you all have had/are having , a lovely Easter break.

HUG ME I'VE GOT MND

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

DAY TIME TV

I wonder how many of us watch day time TV? 

Me, I have fads. By the time I can repeat the format, script verbatim, I realise that it's time to stop watching that particular program.

But I must admit that DOCTORS, BBC1 at 1:45 each day ,does grip me. It's a great format. The underlying story of the Doctors Practice and always another compete story going alongside.

The recent doctors story. for several weeks, has been about a doctors husband who has has a stroke and wished to end his life. He planned to go to Switzerland. His family were very against this decision. Eventually his wife realised that as this was his wish, she would help him by supporting and booking tickets. It the end , however,he did get tablets and ended his life at home.

I wonder how many of us when diagnosed with MND think about Dignitas.?????

I certainly did. 

But having researched it ,I realised that I would have to die sooner than I needed to, ie whilst I still had quality of life, because of the need to be able to swallow the med by yourself.... (even though there is apparently something that lifts the cup.) The thought also that you have to be resident in Switzerland, for four days prior to the end completely freaked me out.

Imagine, "Well what shall we do today", off we go sight seeing !!!

So I wonder how many of us have thought along these lines? 

MND is very had to live with.

 I'm finding that it isn't the issue of being terminally ill, but all the crap that goes alongside.... the catheter, the hoists, the space the hoists will take up ( two arriving tomorrow), the not being able to reach things that people have put away in the wrong place,the worls that helps me on and off the toilet, the people that pull up my knickers,  the fact that I need carers.............. but would like space and time and peace for myself.

HUG ME, I'VE GOT MND

FROM MY "SENT" EMAILS

I don't know why, but some friends don't keep up with my news, and kindly send emails asking how I am............ WHY?? when its all here !!

So I often respond by using copy and paste, from this Blog !!

But tonight, I'm doing the opposite , this is an excerpt from  my email response to a friend who sent mail today, asking how I was..........

"Yes snowed in! No carers for 3 days to get me up and do tea time call .They didn't get through till last night. Thank goodness for the tenacity of my night carer , she walked from her stranded car. So I was safe and didn't have to sleep in chair !!

I’ve had a bad last few days. A disastrous meeting with urologist who basically was a bully. I now have a catheter of the type I didn't want ! This went wrong last night and nurses had to visit. They got stuck twice !! (because they used Sat Nav and didn't go up Keighley Rd as I suggested !!) But the nurse was kind when she arrived at 1:00 am, and helped considerably.

Also, yesterday , I had to be rescued from toilet by neighbours who has fortuitously just given me their phone number the day before!! Also, first thing found I couldn't get off bed without help and this has been my big positive skill in life!!

BUT today whilst transferring from shower chair to w. chair my legs started to go. I said to shower woman, that my legs were going. Oh no she said , I've got you! But none-the-less I ended up on floor and had to call the care team to pick me up. They came in 30 mins, despite having the wrong post code (HOW???? !!!!)..... so several calls later they arrived !

And finally (well you did ask how things were), I went into spare room , somehow knocked the door. It moved and got the headrest of the chair stuck in the handle. I got totally stuck !! Called the number of the only other neighbour that I knew.Asked her to take photo first as this was becoming an hysterical day!!

And its only 5:30 what else can happen?"

And this is the pic !

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 

MY LAST SIXTY HOURS'

So, having seen the urologist on Tuesday, I did agree to having a urethral catheter.... but was very anxious about it.
It seems/ seemed , to me that a supra pubic catheter is a medical intervention, but having one through the urethra diminishes my femininity.
Anyway the Di was cast ! BUT I said I do not expect the district nurses to arrive unannounced. I've had this experience and wanted to guard against it .
SOOOOO.........
What happened ? On Wed morn ,as I was enjoying my shower, who arrived? Yes, the District nurses.
 I was upset and angry.
 I became even more upset and very angry when they wanted to talk to me through the door whilst I showered.
I then became hysterical and shouted, "I'm a person not a piece of meat".... when they persisted in trying to engage me in conversation.
They waited. They apologised for just  arriving, but said they didn't get that message.
I asked them to sit whilst we talked.
 They didn't.
Now, any one in a wheelchair recognises how dis-empowering it is to talk to people who tower above you.........
Normally I cope , but on this occasion my temper and general anxiety was rising.
So into the bedroom we go. Curtains drawn and light (with low energy bulb) put on.(ie not very good light.) They lift my legs on to bed and said to open them up and move them to the side. I said you will need to position them.... they seemed slightly mystified !
So legs in correct position, they said its not very bright.
AND .You so will laugh at this.........
I said the reading light is bright...
 ah said the nurse, there's a torch here ! 

SO, Am I one of the few people to have a catheter inserted by torch light !!!!

They gave me a run down on attaching bags etc.... and, I am bright , but when you are in quite a state of shock you cant be sure if you have taken detail in.

The rest of the day I spent anxiously as I seemed to be sitting on the tube. A carer arrived and said there should be a thigh band.
I rang district nurses. Yes they had one. It would be behind reception at Mytholmroyd medical centre, but centre would be closing for training ( in  Courtesy I ask myself!!) . I had to get there in the next hour.

I rang a friend who, was waiting in for gas man, but none-the-less collected thigh band. Felt more secure.

The first night of sleeping with this thing coincided with a new night-time carer. Now these people have been of variable quality and the three regulars I now have are brill, but a new person??? Anxious !!!!

Anyway Janice arrived and was a world expert on catheters and helped me de-stress and made sure I was comfy.
Even so I woke every hour or so.

Morning carer arrived and all went well.

Last night all fine.I slept.

BUT This morning..... I woke as I was getting texts and heard the beeps. ( The night person leaves at 7:00 and the breakfast person comes between 8:30 and 9:00) ,
I noted the time. 9:20.
I read the texts . Cleaner would not be able to get up.... snow.......... phone call,breakfast  carer not able to get up...snow.
I looked at the bag..... full.

I knew I had to get out of bed and disconnect and get to bathroom to empty.

HOW. What would happen if I stayed there... would it back up? Would my bladder explode !!!!

So, somehow, and I can only put it down to sheer bloody strength of mind and the  fear of remaining where I was ......... I did get off the bed, I did disengage the bag. I did get to bathroom.

I shook. I shook. I shook.

The phone rang, carers would try to get up to me asap. Was I OK? or should they use search and rescue team who have 4X4...( Just think I could have been on one of those rescue programmes the BBC like to put on!!....imagine !!!!!)

Anyway ,eventually, a brave physio man drove carer up. I was made tea and he even went to post office and bought me a packet of cigarettes . (I know after pneumonia, and not smoking for 15 days , you would think I'd know better!.. But sod it !!)

Julie dressed me. I put heating way up and at 11:40 finally had some breakfast..... Wheetos, my grandchilrens favourite !

Today had been full of text conversations.
Carers did get here at tea-time and have assured me a 4X4 is organised for tomorrow. So that is fine.

However, will my carer arrive to sleep tonight?
Who knows.......
Plan B , if she doesn't is that I will sleep in wheelchair........... well I'll be safe.......  I cant get into bed without help........... so that's that !. my last 60hrs.

I wonder what the next day will bring?? Hugs I hope.

HUG ME, I'VE GOT MND

SHOULD OF

I went to see a Urologist today for advice and information re having a catheter.
(Not that I want one. Not that I feel I am in any way missing out. But a pragmatic resolution to a problem ).

In my discussions, I realised that people were referring to a SUPER Pubic catheter.........

Now , when I do have a catheter, I would like it to be Super.........
However,I did realise, that probably an error of pronunciation was afoot here. What was being referred to as SUPER should probably be Supra ( ie above).
And yes, a quick Google, and I was quite correct.

This lead me on to think about other phrases that people use quite incorrectly

SHOULD OF.......... When people mean Should Have.......

HAT TO............. Meaning Had to

And we wont even go near the use of YOUR, meaning You are !

What concernes me is that, as language is evolving constantly, by custom and practice , this sloppy use of language will become the norm!

BUT What concerned me EVEN MORE, is that when the consultant was referring to said Catheter, he himself called it a SUPER Pubic Catheter !!

What hope is there!!!

P.S.One of my favourite Musicals/ Plays is "My Fair Lady" !!  and my daughter is called Eliza........... Perhaps this all says more about me, than anything else in this ramble.

P.P.S .Forgive me, but it's probably  far better for me to ramble on about use of language than the ins and outs of the catheter !! AND The way I was stuck on the scales and the other general indignities of the morning.

P.P.P.S. Boy,  am I leaving myself open to critism regarding my use of language .... and YES, I do know I use weird punctuation......... but that is for effect, (my excuse)  and as for spellin......the spell check is on strike !!! LOL !!!

HUG ME, I'VE GOT MND.