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Wednesday 27 February 2013

YOU HAVE TO BE FIT TO BE THIS ILL!

So ................I started a post re carers, 30 hrs ago... As it wasn't complete, ie I got disturbed... I haven't yet published...


So I thought I would skip forward to today......

I had written a long Blog ..

and out it has sailed into the ether!

Too too tired to re write....

BUT tomorrow ( please god, a fun and free day), I promise I will catch up ...

And leave you with the life enriching piece of music.




Thank god for you, my dear friends. You provide  the balance to my life because without you,  the "authorities"would surely  get you beaten into submission..
(But not me!)



HUG ME, I'VE GOT MND

Saturday 23 February 2013

SIZE DOES MATTER !

So my last Blog was about the situation I was in re getting off the toilet.... and carers..

You will be pleased, I hope, as I am, to find that I am NOT in a Care Home ! But it was a battle !
If I'm repeating here please accept my apologies.... The last week has left me exhausted,  I have been very emotional..... thus haven't updated the Blog for a few days.

SO .........  SIZE DOES MATTER !!   I knew, when they were described to me, that the spacers would be simple tubes, about 1" high... I also knew that an extra inch of height on the toilet would enable me to get off by myself..... well, for a while ... until a care plan and other issues were on the way to being solved.
It realise that if I have a full time carer, I will be be able to have help with the toilet at any point of the day. Either with a helping hand to support me or, in a while, an inevitable hoist.
BUT......... I do not want 24 hour care. The thought of someone in my home all the time horrifies me, I need space . (Mind you the thought of a Care home horrifies me more!!)

To give the Matron  credit , she did talk to the GP immediately after leaving me on Wednesday. The GP  did an urgent referral to a Urologist and I have an appointment for mid March .
The Matron did ask if I thought it might be an idea to find information on catheters , did I Google.......... !!!!!!!!

AS IF I WOULDN'T .........

The care team did Thur and Fri morning... and from today, will be in  morning and evening... but I have no idea for what time this visit is planned. (Ho Hum !!!!)
NB. .......... on Friday I did send a message via carer for the manager of the service to contact me... I have no contact number.... but she didn't..( I guess beggars cant be choosers... !!!!!!!)  BUT by listening to me, they will save money as there are certain times I don't want the carers !

You can only do so much....When will some of these people realise Im not thick !!!!

This certainly doesn't apply to all the teams.The  usual team of Michaela and Bethan are brilliant , and have been since I first met them over a year ago. I am treated with respect, understanding . My thoughts , views ideas are taken as important.

This is a mix up of thoughts and events I know...

But back to the Spacers. Prism are the company who supply and fit. Estimated delivery 3 to 5 days.
Imagine my delight, when I got a call on Thursday , from Katy at Prism, to say that the engineer would arrive to fit them on Friday morning, at 8:00........ OH dear, early start ..........., but I knew it was in my interest to getup .

AH ! Katy said ,The engineer doesn't have the part. I'll get the couriered over night.
AH! Katy said,  That's no good he needs them early. I'll get them couriered overnight, with arrival before 9:00.

AH Katy, I said, You are a star !!
Prism certainly pulled out all the stops. What service .

So Fri morn, I was up at 7:30 and Fed EX arrived just after. Engineer arrived and didnt bat an eyelid when I said I needed to take a picture.
Here it is ...........

The little silver bit is all that was necessary..OK a short term measure, but had it be ordered when I asked ( a month ago), I would have be saved all the anxiety, all the upset, all the worry... AND the indignity of using a commode for 3 days. (This latter bit, not at all nice........ but I'm not going into detail !)

What a week. I do hope I get some peace next week but Monday is not going to be, for certain.. My diary reads thus:
8...                Carer, making breakfast
9.....             Splash , showering me
10....             Laura arrives
10:30............Michelle re direct payment planning
Plus at some point the District Nurse will come to take blood .. ( another story re liver function...)


HUG ME , I'VE GOT MND 

Thursday 21 February 2013

AND SO... THE LATEST TOILET SAGA !!

It started on Monday , the day I was 64 plus 1 day !!
I was showered and about 30 mins later I needed the loo... I couldnt get off....... I had to call for my daughter , Eliza, to help me.
How awful for a child to have to help her Mum off a toilet. But Liza was brilliant and just got on with it.
During the afternoon  all was well . But in the evening it happened twice more. Liza to my aid.
We both felt stressed.
On Tuesday morn I realised I had to do something. I got through to Michaela at the the rehab team. I explained the problem. Liza was going home. I would be alone to cope. It was hospice day. M felt I should go and that she would be in touch.
AND... she was ... She contacted Overgate Hospice, and explained the problem. Liz at the hospice spent much of the day with me helping me to come to terms with the situation and explaining the possible help I might get.
Michaela kept in touch.
The answer was emergency respite carers. But ............. there were none !
I was very upset, as I had flagged up the problem of my getting off the toilet about a month ago. The solution to this was to have a riser placed in the chair above to toilet. It should have been ordered. BUT  whilst this had been tried to be ordered there was no urgency attached.. So no riser available as no invoice..  No riser in place.... no planned help !!!!  The OT eventually asked for a manager re the riser order, and it was actioned BUT no funding actioned.....
However, Eventually.............  the order was put in for this riser, but finance not agreed ! So email sent.. Not followed up....
At this point I was furious and weeping. I had alerted the OT to the need, and ,that as I can see how my body is weakening I knew I would have a problem within a few weeks.........
Liz , at hospice was obviously concerned and cared for me whilst I wept.
Fearing a night alone and unable to get off a toilet, I contacted a friend and asked her if she would stay the night. Kindly, she agreed.
I had a phone call from  Liz Thorp to say Calderdale Matron would be consulted. BUT , Sadly there was no capacity for emergency care , as there should be !!!! Would I be safe tonight ?...
Well yes I would, thanks to my organising a friend.

NOW, It may be peculiar to me... BUT... I simply don't wish to mix friendship with care. Care I pay for and friends do things because they love me, and help in emergencies... but generally they are there to enrich each others lives... not to get me off the toilet because the system fails !!!!!!


ANYWAY.....So my friend came in at 6 and I went to the loo. She helped me off. She returned at 8 and we shared a pizza and drank some wine. She helped me off the toilet.
At 6 on Wed morn , I needed the toilet.... I went and as I was rested managed to get off by myself.
I had arranged that my PA/ cleaner , Laura would come in early at 9:30. I felt safe.But soooooooooo let down by the system.

My friend left at 9 . Lara arrived at 9:40. Splash arrived and showered me at 10:45. This was just completed and I needed to rest with a coffee... and yes a cigarette.... When there at the door was Matron Lyn/Lyz Cliff and a social worker.

They said I gather you have a crisis .... I wept. The social worker was kind and understanding and said take your time.......... The Matron..... continued, that the only option available was for me to go into a rehab place at a care home. She added that the max time I would be there was 6 weeks .. ( SIX SODDING WEEKS !!!!).... She felt hat I might get better given this time..... I said that MND didnt work like that. !!!!!!        She felt that with aids I might manage better !!!
AIDS!!!!!!.. I knew that Michaela and Bethan had been working their socks off analysing  aids ...... what I need is the spacers for the chair over the toilet. These should have been organised weeks ago. I had alerted all to the fact that my legs were getting weaker and that I would need more height to get off toilet !!!

RATS RATS,,, It's bad enough having MND, ...........feeling you have to drive your care is bad enough... but then, when it isn't actioned... it's simply shit !!!!!

The question of a care plan came up.... and it has been actioned that I meet with the planner on Monday... However care goes from a social worker assessment... this was done mid Dec... my needs have changed so much since then... they change almost daily....
 don't they understand how MND (ALS) , works ?? 

The other issue was a catheter  My thoughts are, that if someone is in my home in the morning when my bowels open, then the rest of the day is covered by having a catheter.

So Matron was all for fitting one NOW!!!! I said no. I believe I need a supra pubic catheter  She said that could take ages, You have to see a urologist. Absolutely I said, I don't want to go in to this lightly  and need to see a specialist who will explain the pros and cons of each type of catheter.

Matron still said there was no carers available and the care home the best option..

Meanwhile we all knew that Michaela et al would be bringing a commode and slider which may help.

At 3 the team arrived.

We moved the bed , tried the commode, but the energy required was too great to manage..
I reminded the team that I had no problem (well little problem ) getting out of bed, into w, chair and getting to toilet. It was decided that the commode could be in the spare bedroom....

BUT.... NEWS !!!!  An emergency person would be be able to come in between 9 and 9:30 on Thurs and Fri and as of Sat a career will come in twice a day.

SO, now I have to make sure bowels move to order !!! BUT ,if they don't the commode is there.
The only word is SHIT... Literally LOL !!!!

So if the care planning gets sorted I shall employ a morning person, and have a commode for the rest of the day, until a an appointment with a urologist is made.....

What joy.

I've shed many tears...........
all I want is independence and dignity..........
I know I will pay for this .......
but even allowing for this, the backup has failed.......
what more can a person do ????

HUG ME. I'VE GOT MND.

Tuesday 19 February 2013

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 


Sunday 17 February 2013

NOW ... NOT WHEN !!!

Today I'm 64 !

Last evening very large amounts of curry and copious amounts of champagne ! Presents and cards....

Today a BBQ !

Who could ask for more....

So ,

Will you still need me,

Will you still feed me.....

NOW , I'm 64 !!!

YEY!!!!





HUG ME, I'VE GOT MND


Saturday 16 February 2013

I'M A HAPPY SARDINE

Today  I am a happy sardine..

Why ?

Because both my girls, their husbands and my three grandchildren are visiting....

We squished into a 2 bed room bungalow ..... great fun

AND IT'S MY BIRTHDAY TOMORROW !!! YEY !!!!!


HUG ME, I'VE GOT MND

Thursday 14 February 2013

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



Tuesday 12 February 2013

SORRY .. DESIGN FAULT !

Oh dear... BUT thank  goodness Lynda alerted me! ....

My Blog was a weird colour setting, thus unreadable!

I've done a quick fix , so now it's readable... But not in my preferred colours... So sorry, if you were one of the 60 who tried to read!

I don't know how MND has had a effect on this... But instead of my intellect I'll blame the MND....

LOL

Well why not!

HUG  ME, I'VE GOT MND

Monday 11 February 2013

LIFE'S TOO SHORT TO EAT SOFT TOMATOES !

So as of today I have had 21,225, hits.... Cant believe it! 
Thankyou to anyone who has read these posts ! 
I sincerely hope you have found solace, help.............. or mere fun in reading !

As for today's title ... Laura was making me a salad for lunch.... I knew I had ordered too many tomatoes by mistake ... I then had a moral dilemma .. eat the soft tomatoes first,... then, by the time I ate the others , they too, would be too soft .. so.... dump the first lot and have the salad I would enjoy...... dilemma ...... thoughts of those who don't have sufficient to eat... 
sorry, didnt do the moral thing.... we chucked the soft tomatoes and I enjoyed the salad. 

BUT... had I not have  MND , I would have used the soft tomatoes in a sauce.. even if it did get frozen for later.. 
but I can't do this now.... so sorry world !..

I promise I will do a better Tesco order in future, and revue the the content of fridge before ordering.

Care costs: 2017 too late for me ... so I battle on, spending my children's inheritance.. as will most MND people I guess.

 And as for saying all people with disability or terminal illness will get their care free , as they do now..... sorry BULLSHIT !!!!

February... next moan... it's  Feb-RU-ary ...not...Feb-U-ary .   NB BBC and ITV !!!

Moans nearly over... : Sharon from Splash didnt arrive this morn.. too much snow ?   

Thank heavens for Laura who helped me get clean and fresh ...

Beth from Equipment loan didn't ring back today... she had woken me on Sat morn  saying I had two Rise and Recline chairs that needed servicing... got short shrift !
 I've been through the two chairs stuff twice before ! .............and the only chair I have is two weeks old... so why does it need a service ???   I suggested she rang back today, but  she didnt ! I await the next call !!!

This Blog  Post should have  been, was planned to have been, about the total busyness of last week, and thus why I didnt Blog for a few days... but it's all lost in the mists now... I'm moving on to this week... ! 

BUT have to add a funny.. Last Wed night got my dinner out of oven and dropped it... covered it up with roasting tin.. thinking friend would visit on Thurs..... she was ill... so I spent two days  driving round the mess on floor.

Dropping stuff continued all day Thurs... but the day did start spectacularly..
.................... I drove my w.chair over my clothes... got jeans and bra totally, TOTALLY.. caught up in wheels !!! 

It could only happen when you are in a wheelchair and your arms aren't too strong.. ie you have MND 

So, sorry , my written diary will hold the secrets of my last  manic week... and we will start again here ...



Tomorrow, Overgate Hospice day... 

Watch this space xxxx

HUG ME, I'VE GOT MND

Sunday 10 February 2013

SNOW MEMORIES

When I was very young, living in The Royal Forest of Dean, I remember my first snow event. It was deep, very deep. Presumably, my Nana, who looked after me whilst my parents went to school, couldn't make it to our house.
Dad decided to take me to his school on the toboggan. We lived in Cinderford and his school was down a hill 3 miles ,in Littledean . We went over the fields and apart from it being fun at first, I well remember crying because I had very cold hands. I was put in front of the coal boiler in the classroom to warm. In the afternoon it was painting, and I managed to spill a whole tin of red powder paint over myself and the floor.... I think got told off...  I was only 3 !

No more snow memories until I was 11... Mind you we had been living in the Bahamas until then so hardly any possibility of snow !!! My memory is, again,  of fun on a toboggan, the same one. We lived in Station Street, it is a hill. I went up and down, up and down , till well after dark. When I got in I was wet and cold and mum put me in a bath. Oh the stinging as I warmed up!

When at College in Leicester, I had to ring up, as I had been to Cinderfrd for the weekend... but it had snowed and as Cinderford is high up the snow stayed , so I contacted college to say I was snowed in. I'm sure they thought I was fibbing ! But I wasn't !!

When Chrissie was 2 1/2, we visited a friend and it was snowy. The children all went in the garden to enjoy. All except Chrissie ,who didnt like it , ( she was the youngest by far)... My friend, who was in a bad mood said, It isn't as if she's never seen snow !!! Yes I said, once before, but she was only 18mths ! I was cross at this and remember it very clearly.

Next memory, and the on-going battle to get Eliza to wear wellies when snow was on the ground. We both shouted and eventually she left the house in wellies. I then found out she had gone to Rebeccas round the corner, and changed into her shoes !! Think that was Liza 1 Mum 0 !!!

Horrid memories of snow when I was a headteacher . Oh the stress of deciding if I should close school or not. In the end I usually went with the consensus, as once at Walsden, I kept the school open. Little did I know my school was the only one open in Calderdale... and thus no school dinner would be on its way. I got Grandma Pollards to send up 65 portions of sausage and chips. This cost 50p more than the dinner would have been, so in my Friday newsletter I asked for this back from parents. Most sent it... but some argued,  why should they ! I despair ! Actually the unusualness of the lunchtime gave those little ones a memory that I hope they will treasure... well at the very least, a happy memory for me.

So now I'm retired ,What is my attitude to snow .... well it has changed.
It means I have peace.... wonderful peace.... I get to spend my day as I wish and this is painting as a first choice......... (Fewer medical people attempt to visit, but friends stay in contact via phone).

So, Snow ...WONDEFUL... Thankyou for giving me a break, for providing an oasis of tranquillity.

HUG ME, I'VE GOT MND.

Wednesday 6 February 2013

SPLASH !

I had a really bad night last night.. for two reasons. Firstly, I was to have my first meeting with Sharon , who would be washing me , and secondly I knew I had to be up at 7:15 in order to take off the ECG monitor which was to be collected at 7:30.
Consequently, I slept little and instead of painting as planned , I ended up in bed this afternoon for about 4 hrs. However,this sleep was interrupted by Boots delivering meds....
My prescription arrived with lots of code zero on them... apparently I have to see Dr to get any more repeats ! WHY?? Surely the Riluzole and Metformin are standard as I am unlikely to not need these !!!
I fear another battle !! RATS!!!
I'm so pissed off with these little interruptions. Just when you think something is working, it B****** well breaks down !!!
Why?? It stresses me so much.
MND is hard enough to deal with ,............. well you would think.
Sooo maybe, I've got it wrong, maybe this will just be a simple phone call... but it's yet another "one more",  simple phone call !
Rant Over !!!!

So onto Splash!
I know that showering is something I enjoy, something I need, something I want, and something I have always done for myself since childhood. 
Recently I have found that showering, drying and dressing has been too exhausting... it uses up half a day of energy... AND.. I have had difficulty in the transferring from power chair to shower-chair.
Sooo. THE SOLUTION... get someone to shower me, and dry and dress....
But mentally. what an adjustment. It is almost the ultimate in the invasion of my personal  space, for me. I only see, at the moment, someone feeding me and or wiping my bottom as a worse invasion........ and erosion of dignity........... Is there more ???

What do other MND people think ?? Have you had to go through these issues too ?

Well, Sharon arrived. I was expecting a little old lady, sort of a Miss Marple...
What I got was a tall , friendly,tidy, woman wearing PINK Dr Martins !!!!! YEY !!! Within a few moments I knew we would get along... perhaps the Docs were the clue,(and the colour of them !!!).
Sharon was simply brill. She somehow managed to allow me to retain my dignity, giving me choices in everything... She washed my hair and dried it too. She could see my skin was dry and put on moisturiser... she treated it all as a Spa Day !!

How lovely. I feel confident and very happy that she will take over this aspect of my care.
At the moment she has only two spots, but I hope ,will soon, find two more.

So, after the anxiety all is well. I feel proud of myself, that I have faced yet another hurdle... and got over with success.

HUG ME, I'VE GOT MND

Tuesday 5 February 2013

MON, TUES, WED and THANKYOU VIV !

Bit of a catch up here and about Viv.
Sunday was quiet, good and calm. I spent much of the day writing my version of what I require in terms of Care... then planned to complete on Mon to give to Michelle at he planned visit today... But this got cancelled... there is a lot of snow here in the Pennines.
On Sunday evening Elsa came round , wheeled me in and out of the shower and made a GnT for when I had dried and dressed.
However, Sunday night was not a good night. I woke to turn over . My right leg turned, but my left didn't... I ended up in a frightening situation, where my legs were knotted and I had to lift them apart... I then couldnt get back to sleep... worrying....
Consequently on Monday morning, when I had to leave for Halifax Royal Hospital at 10:30 (early for me), I really , really, didnt want to go. BUT I had cancelled the first appointment , the hosp had cancelled the second ( the machine wasn't working), and thus at the third attempt at the Spirometry clinic appointment, I really felt I must not fail.
So having had a major stress re parking at the hospital (looking for a space), I made it to  Spirometry only 2 mins late .. Viv met me and said that she had been looking at my notes.. and had noted that I had another appointment for Fri for the 48hr ECG machine to be put on. (I sometimes have a racing heart beat). So, clever , kind Viv, had organised that I could have it put on at this visit. AND , not only that, but transport would pick it up to return it on Wed morn . (The only problem being that it could be any-time after 7:30 !! Needless to say I will still be in PJ's !!!)
I was well pleased with this service. My huffing and puffing into the tube ( that's what you do for a Spirometry test), went Ok.... A computer has to match and compare readings , so you don't know how good your breathing is till the results come through. However I could see that my effort was consistent , so I've done the best I can do.
I had planned to go to The Range after this, but the need for the toilet, and hunger, drove me home.
I enjoyed pasta with mushroom and tomato sauce... yum.
Laura had been and the house was welcoming and sooooooo clean .
I then worked on the care plan and printed it out, watched Lewis and went to bed... noticed it was snowing !!!
This morning the snow had deepened, so I thought the ambulance may not arrive to take me to the Hospice. I therefore put on painting trousers so as to hedge my bets..ie,  if transport didn't come I would have a calm day of painting. BUT the transport did come.. so in clean (but dirty !!), jeans and fur coat I set off for Hospice.
There were only a few of us today, my friend Jackie had a hospital appointment so was absent ,and another friend is in bed care... sadly , not well at all.
I had a coffee , a long chat to the nurse and then it was lunchtime. I had my usual of jacket potato:  and today there were prawns and also a lovely salad. For desert I had some fruit . We all sang Happy Birthday to Ann, who will be 40 on Thurs.
 There was chocolate cake, but I was having Reflexology when this was cut ... RATS !!! But the Reflexology so relaxing that actually the trade-off was worth it .
On the way back Michelle rang: no visit re Care Plan because of snow... now fixed for 2 weeks time .... RATS !!!
So here I am watching ( well listening to ) Four In A Bed. I plan to do emails, watch the news and then paint for a few hours...
Snow was deep at 3:00 ,but since it has rained and is being washed away. However it is predicted to get very cold tonight, so if it freezes the roads will be very dangerous...
Good job I am not planning to go out tomorrow though I do have a visitor ... which I shall write about then...... A new challenge, someone is going to shower, dry and dress me.
I cant begin to tell you with how much trepidation I am approaching this....  but it is the next necessary step... I can see that.......... BUT.........

HUG ME, I'VE GOT MND

Saturday 2 February 2013

BAKING TRAYS AND NO HEAT!!!

Woke this morning, went to bathroom.
Went to wash my hands... water cold.
Never mind, I thought ,it takes ages to get from boiler... so just coped....

Made coffee.
Turned on tap to wash fry pan... It ran and ran and ran... eventually I realised there was no hot water... Felt rads... no heat... PANIC !!!!!

Left it for the time and  drank coffee... no heat.
By now 10:30.
Rang Richard, landlord. He said he would be up by noon.
R arrived at 11:30 , just as I finished dressing, having "washed" with Pampers baby wipes ..... Very Glasto !!!!

It turned out that the water pressure was minimal... and was sorted by 1:30.

But at 1:15 my mate Tony arrived... we had a coffee in the sunshine. ... and he collected paintings which he had bought.

At 1:45 Sue arrived.
At 2:30 six women were due to arrive for a Jamie Oliver cook-ware party... Sues first ..... She sorted it all...... I had been so stressed by lack of heat.... or potential lack of heat,  that I was frozen into a position of inactivity.

Anyway. The J Oliver stuff is great.
Sue was great and I chose to buy 2 things. A set of small baking trays (had only just thrown away mine as they were peeling ), and three dear little dishes for little snacks like crisps , olives etc..........

So here I am.
I've made a salsa and will shortly put some potato wedges in oven along with Tandoori Chicken brought by dear Pat.

I am having a calm evening.. and looking forward to a gentle day day tomorrow.. doing some writing on my care plan.. and some painting.


HUG ME, I'VE GOT MND

Friday 1 February 2013

ELIZA CATHERINE

Today is the 36th birthday of my daughter Eliza.

As I did with the birthday of my daughter Eleanor , I would like to record the events , my thoughts and memories of her birth. When it is the next birthday of my third daughter, Christina , then I shall do the same.
Thus I will be creating a record for them all... my dearest daughters.

Well, to sort out names first.. Eliza was always my preferred name for a daughter and happily my husband Ray, agreed.

I had seen the musical My Fair Lady at Drury Lane when I was 13. (Each year we had a trip from school to watch the England Hockey Match. I always signed up... not that I was in any way sporty......but we always went to a West End Theatre afterwards..... my real motive !!!  And , that year , when I was 13, we saw My Fair Lady... and for the very first time ( even though my parents had taken me to the theatre in the West End many times before ) , I got that tingle ! The so special tingle, as Eliza Doolittle, said, perfectly, the Rain in Spain.......... ).

I then vowed my first daughter would be named Eliza....... and so it happened...........

Eliza was due towards the end of January 1977, the 24th If I remember correctly.........
We lived in St Neots , Cambs at that point.
Ray and I bought our house in Eaton Ford  just as I was pregnant, moving from our two bed home in Little Paxton... to this new build......
Boy was that summer hot !! I sat in the garden as Ray slaved away making the patio , lawn and planted borders.
 I ate and ate peaches.... a wonderful time , such sunshine and such rest and such happiness.

I planned to have my baby at Primrose Lane Maternity Hospital in Huntingdon. Baby was over-due and my BP high, so I went in on Jan 28th.
The next morning I had the first amazing experience.. an enema !!  Truly awful.... felt sooo ill..... Then second experience stirrups... ! And the breaking of my waters.
Baby did not start.

29th was a Sat. Ray ,a football Referee , missed his game and brought me a bunch of daffs.

No contractions.

Moved to Cambridge in ambulance on 30th. The co driver said do you mind if I sit in front? Will you be OK? Yes I said. He then said , Great !then I can have a smoke !!! (How times have changed !!!)

I got to Cambridge and walked slowly to entry. A nurse waited... Get a move on she said. !!!!!!

I was put in a ward where there were abortions taking place.
My BP high ... and for some reason I was told to keep all my urine. The urine bottles were stored in a windowless room... shelves and shelves of urine  ... all sorts of shades of yellow !!!
I was later given a pessary... This caused me to have diarrhoea.....  and I valiantly... because I obey orders... still tried to collect urine.... totally impossible !!!

Eventually a Dr came early evening on the Mon 31st and said that a drip should be put up.
I started having contractions. A monitor was attached to babys head (causing a bald spot .. I think to this day ).
Baby was monitored. I was monitored. My BP went sky high. Baby wasn't doing too well either . I was offered gas and air for pain... I hit Ray with a single side swipe ... sorry !! I couldnt cope with the black mask over may face ..........

So ,mid afternoon an epidural was given to bring my BP down and for pain control as I wouldnt use gas and air.
The epidural worked for me , but baby still not too safe...
Eventually it was decided to use forceps. The same Dr as in the early evening came along with the consultant. I enquired , had he had any sleep. No, he said.

The forceps were about to be inserted... no not that way the consultant said .... A discussion followed between Dr and consultant .
I intervened... Just get this baby OUT !!!!

So the consultant went with the tired Drs way ... and my dear baby was born.

I was utterly shattered, and needed stitching... so Ray held her for her first hour.

I was transferred to a ward where a met a lady, who later became a child-minder for Liza... I've forgotten her name but the baby she had was Suzannah.

I had a nap and woke to a basket of flowers............. ( sadly these were from friends (Not Ray.. and this proved fuel for many a row in the years following as I had asked specifically for special flowers, as I had never had delivered flowers from a florist ) )... cant remember these friends names, but I know they had a pet kestrel called Dimelza ! Bizarre what you remember !!!
The flowers were from Fulbourn Nurseries... Fulbourn was the mental health Hospital... so in my half waking state I did wonder where I now was !!

After24 hrs I transferred back to Primrose Lane. I shared an ambulance with a woman who had had a boy... can't remember names.....but her husband was a Prison Officer at Kirklevington... we met a few times after , as our babies grew.

At Primrose Lane all was provided. Nappies... terry type... used all the time.  No plastic cover .. and babies wore nighties... so to save them getting wet we had to fold them to the waist... poor babies... cold toes I expect!

I spent the rest of the week in hospital. We were showed how to bathe the babies, and how to feed them... I got on quite well but eventually had to give up breast feeding with severe mastitis...... after 3 weeks.
But at least ,my dear little girl, had the first few weeks of breast milk.

When I got home I still had terrible trouble walking. Epidurals are better now.. and what with the stitches... not easy.

We didnt have a camera so there are few early , pics but Eliza had loads of thick black hair. It stood on end... The health visitor said , Like lavatory brush !! I was not impressed ! 

And this song will alway be special to us... It was a hit as Eliza was born. And so true... Eliza is lovely to this day and still my baby , even if she is 36 today.
Special hugs to you Lovely Liza . Mum XXXXX




HUG ME , I'VE GOT MND