Sunday, 31 March 2013


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.


Thursday, 28 March 2013


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 !!


Wednesday, 27 March 2013


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.


Monday, 25 March 2013


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 !


Sunday, 24 March 2013


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.


Friday, 22 March 2013


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 .
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.


Tuesday, 19 March 2013


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 !!!


Monday, 18 March 2013


It's hard, keeping track of my life from the wheelchair. BUT it is necessary as I want to live my life, and NOT my life as others think I should. OK I'm open to suggestion, but I wish to assert  my right to accept or decline these suggestions!
The decisions I make about how I live about my life are what makes me me and not a shadow of me.

But this message is hard, so hard, to get over to people, and it's even worse when you have so many people all coming into you house each day.
For example today ( Monday )I have had, Marianne, Sharon, Laura, Chris, Christine, a Nurse, Barry , Michelle and I have the night time carer to arrive at 10:00!

Each person is so kind.
Each person means to help, wants to help.
Each person has their own agenda.

Sharon, for example, got a red towel out of the cupboard today. Not her fault. After all it was a clean towel.  But, red towels are kitchen towels... I was able to explain this and it's not a big issue....... but multiply this by a few things each day for each of a few people........... and I end up frazzled,  having to check everything OR write notes everywhere...
AND experience suggests that people don't always heed notes .........

SO ?
Am I a control freak ?     I hope not!!    Should I chill more??
 It would be  a diminution of me, the dwindling of Nikki.
A reduction in the me-ness of me!
Maybe small things at first (like Red towels !)  but  small things overlooked as inconsequential,,,,,,,,,,,,then grow.... and become matters of great consequence...... and my fear would be that by the time that happened I would be unable to control events.
So I have to control NOW.

To Explain:
It would be like wearing any old perfume rather than the fragrance I choose to wear.
It would be like having brown sauce, because, after all, its a sauce, when actually I want tomato sauce.
It would be like sitting in the Stalls because, after all ,I'm  at the Theatre, when actually I like to sit in the Circle.          
I could go on.....

Should I just be grateful ?

Can beggars be choosers?

I do hope so, because I will defend my individuality, I wish to retain any of the bits that you may feel are eccentric, but which I treasure.

Please people don't be offended if I ask you to change a red towel for another colour. These are the quirks that make me Nikki Woodman. And If I don't have them, if I cant retain them, then I may as well give up now, I might as well not exist.

Its hard keeping on top of all this , please respect me for who I am.

Thankyou....... and


Sunday, 17 March 2013


As you know I have lots of people coming into my house. Up to three different carers per day, friends , my PA Cleaner, family, medical people...............

With so many people all "Helping" me, it often difficult to keep track of what is happening...... BUT  ......It's really important to me, that I keep my life running as I wish it to. NOT as others feel I should. 

This extends in to all sorts of areas,eg  where food is kept, where things are plugged in  , and, (relevant to this post) ,how recycling works in my house.

Now:  People from different areas frequently  have differing recycling criteria. People have differing personal  recycling habits.... and this I do accept.   BUT: I believe in recycling and do want people who come into my house to recycle as I would.
The Calderdale system may not be perfect, but its what we have to work with. In some ways the system seems daft... there is a box for plastic.......... but not just any plastic, just milk and pop bottles... Not Yoghurt pots, meat trays  .... just milk bottles and pop bottles........... Now, I further complicate the system, because I have 3 coloured bags in my kitchen, rather than use the tatty boxes and bags that Calderdale provide.

In an effort to make recycling fun and accurate, I've written the fillowing poem. So if you do ever come to my house,where there are three bags for recycling,  please will you support me, by remembering these words.

So, new recycler,
This is what to do,
Follow these instructions,
And you won't get in a stew !

Envelopes , lists and old notes,
Blue bag is where they stay,
No egg boxes or thick card,
They wont take it away!

Now green is for glass,
And empty and clean tin,
But no broken glass or lids,
They, go staight in bin.

Yellow is for plastic,
Milk or pop bottles best, 
No wrappers, trays or yoghurt pots,
Or in the bag they'll rest!

Now if you keep these principles,
You'll be allowed to preen,
And say I did my best,
To keep our world more green!

This not the first time Ive written a peom to try to help make my point of view know. In 2006 I was having parking problems outside my house in Thorn Place. I wrote the following poem and gave a copy to eveyone in the road... It worked!

3Thorn Place is where I live,
My name is Nikki Rose.
I hope I’m kind and friendly,
As in my Ka ,I comes and goes.

Some of us have no cars.
Some have one or even two,
And parking is a problem-
I’ll explain my point of view.

I, just have the one car.
It’s tiny, small and neat.
To park outside my own house ,
Would make my life complete.

I know I have no legal right,
So to your better nature ,I appeal.
Thought it best to write to  all of you
And tell you how I feel.

I know I come in late sometimes
It’s the voluntary work I do.
It really is quite hard for me
No space, at half past two!

And so to you dear thoughtful friends
I’ve had my little grouse.
Please be kind and courteous
And let me park,            OUTSIDE OF MY OWN HOUSE !!


Saturday, 16 March 2013


So , day before yesterday,Thursday, and I am beginning to get over the Pneumonia... coughing a lot.... but things are shifting and though I am weak, I'm so so much brighter and happy to be feeling relativly good.

Thursday evening:  And , that strange feeling that indicates the start of cystitis comes over me....
So I took paracetamol , drank gallons of water and took Cymalon.......
Friday morning, I havent warded it off,  and I know its another call to the Drs !....... (And I now have thrush too ( I'm not happy, but coping with this unjustice !!!!!.Didnt think you could get both of these are once !))

Rang Health Centre. After the usual procedeure of the receptionist directing the call, the  Dr rang back. I explained my problem.
Dr: Ahh Thrush, Yes.  You've had lots of Antibiotics , only to be expected . (I concur).
He continued:I'll do three things. You need antibiotics for Cystitis , treatment for Thrush and a bottle for a specimin......
Me: Ok I say ,fine. But, I have a lot of experience of cystitis  and the antibiotic Keflex sseems to work.
Dr: Ahh, but until I have a specimin we wont actually know which one works, so we will give you the one that we generally use. 

(Now this did seem silly to me, as if I know which generally works, and the choice of antibiotics is open until you have a specimin analysed, then why, WHY??? deliberately choose one that isn't the one known to have worked previously........ 

So , to continue.

Dr:  SO . I'll get these prescriptions written up, and you pop down and pick them up...

Me: POP DOWN , POP DOWN !!!........ 
I've got Motor Neurone Disease. Im in a wheelchair. I'm getting over pneumonia...... I CAN'T POP DOWN!

I CANT POP, ANY B.......... WHERE !

The saga continues. I manage to intercept Laura on herway to clean, and she gets prescription.
We have cup of tea. 
I take first dose.

5mins later I have itch on back. Get Laura to scratch.
7mins and I have itch all over back.

Within 15 mins I am itching all over. Tearing at the skin I can reach, thrashing around . Trying to deal with the agony that is a mega allergic reaction.

Another call to Dr.
DR: OH You need antihistamine and I'll write a prescriptoon for the Keflex that you said worked before..........

So 24hrs after this saga, Im on the mend....... feeling more comfy........... but Bloody Mad. WHY, WHY, WHY......... if I thought a certain antibiotic would work and the choice was open ended, WHY WHY WHY didnt that get prescribed...... is it a power trip for the GP???????????
AND WHY, WHY, WHY........ does the GP not know I have MND.

(OK,  I have only been with this Health Centre for 6 mths..... But you would think that for people who are teminally ill, a heading would come upon your notes page ......... After all treatment and expectations do change if you have this, or any other terminal illness.  ( Well I would have thought, what do you think?).)


Tuesday, 12 March 2013


Today I have posted on my occasional other Blog, A YEAR IN MY STUDIO. The images I have included are all about Trees.

But I thought on this, my main Blog I would share with you my latest favourite painting. It is a view from the wheelchair of conversation with a friend.


Sunday, 10 March 2013


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.


Friday, 8 March 2013


This will probably be my shortest ever Blog page !

Busy day... would to ages to write detail, , SO major events are :

  • Night support after Sun, will happen. 
  • Dr visited. Happy things moving in lungs. I'm still v unwell but no need for hospital ;unless I wished.... I don't !                                                                                                                          AND.........Thanks to M, (my Physio),C (support worker) , and friends ,L and R...
  • Hospital bed dismantled ,YEY!!! 
  • Pressure mattress put on double bed.(Necessary) 
  • Bed moved into proper bedroom.YEY!!!
  • Having had 7 1/2 hrs sleep in last 48hrs... sleep will help cure , Im sure.
  • Haven't tried getting into bed yet.. carer here to help.                                                                                                                         

AND , SOLUTION??? Very small appliance added, which will allow me to be raised up... sooooooooooo simple....... 

I am glad/grateful ,  that help was rushed through. The perceived wisdom was, a need for Hospital bed.... BUT.... maybe this very small technology would have worked... would have saved much angst during the last week.(Pic below)

Well, we will see... have yet to try out... maybe on the chair again tonight ....... hope not !


Thursday, 7 March 2013


Last Night I Flew to Cairo ......well , in my imagination ! You see ,the hospital bed is so difficult to turn in, so difficult to sit up in ( even with the leg break), that I decided to sleep in the Rise and Recline chair.
And..... when you are seated like that you generally are  on an airplane . I knew I would be in it (Chair) for 7 hrs, and I recall Egypt is about that distance away...well.. ish...   AND..... as Cairo is my favourite city it seemed the obvious place to go.
Unfortunately, I didn't have time to walk round the Pyramids or to go to the Museum .. as at 5:15,  ( after 2 X2 hr sleep slots),  I woke with a serving of tea from my flight attendant... no sorry, carer!
 By 5:30 the inevitable trip to the bathroom was necessary. I decided I would try the proper bed for a few hours , until Marianne , the breakfast carer arrived.
I got onto the bed and with help was positioned in, in  an upright position. But then the panic came as I couldnt breathe, and couldn't move sufficiently to give my chest the expansion it need to access the air.
The carer calmed me and quickly helped me into my wheelchair.
 It was by then  5:50.. and there I have been since .. You see it's so difficult to get on the Rise and Recline chair without support...  and getting into the chair was never a priority when people came... bathroom always was , as getting off the loo is somtimes impossible.... hope when Im better I will once again self manage...

Anyway , today's visits :
Marianne came, and made breakfast.
Man came to write care plan .
Laura was supposed to come but got caught up on business ( and silly me, I missed her txt).
Julia popped in and so did Ginny... I had a coughing fit so they had a chat..
Tea time carer came, leaned on the fridge door, and now it barely closes.

With so many people coming into the kitchen I am going to have to put advice notices up as the potential damage through   lack of sensitivity as to how things may or may not work (Ie people expect things to work as they think.....and don't make the allowance ,that things may not conform !!!).. The kitchen will end up like a Youth Hostel Kitchen... This all sounds trivial, but it is driving mad having to over-see so many people and there apparent lack of attention. They do mean well, but their priorities are not necessarily mine. Anyway,,,,,,, I did have some calories in the form of cool soup with coldish tomatoes on toast !

Karen was to have visited, but there was an accident in Tod and the roads were closed, hence the carer cooking... Im sure she will visit soon.

And very soon carer for the night .. another new person will arrive.

Its stressful having these numbers of different carers through the door.. and I appreciate that this plan has been put together quickly.... and when I think about it the stress of settling in so many people is less than the stress of not having them.


Wednesday, 6 March 2013


The first time I got pneumonia I was 5. I lived in a v small village called Cherokee Sound, part of Greater Abaco, Bahamas Islands.

On our island there was no Dr. There was a woman , Miss Netty, who delivered babies.. But she had no training in medicine.

So,............. I had pneumonia, and the treatment prescribed was to inhale turps in steamy water.

59 yrs later, well last Wednesday to be exact, I spent a great evening with a friend... Eating, drinking, chatting. One of the the things I ate plenty of, was pickles. At bedtime I noticed my epiglottis was swollen and I started to gag...
Thurs felt tired after little sleep but did go to have nails done...YEY!!!
By 5:00 I felt v v tired and unwell, and went to bed... As soon as I lay down I started to gasp for air..... Thankfully a friend , wanting to borrow a glue gun , popped in at 7 and found me in this unwell state.

Duty Dr called.... Much answering of questions... Eventually a Dr arrived  and said I had a virus but no chest infection, but gave antibiotics as a precaution.
My friend  left. I lay down. Could not get any air, managed to contact my friend who returned... Maybe I was having a panic attack??

Next day Liza arrived. She was amazing.. Putting me to bed, dressing... All sorts of things which she, as my daughter, probably never expected to do.

BUT by sat evening I was reacting to the antibiotics(badly).....oh! I forgot to add in here, that a hosp bed was delivered, but with such soft mattresses on that I sank and could not move. The restriction caused more breathing probs. so out of hrs dr called again (at 7 pm ) , he arrived at 2am.

The doc talked to Liza , ( Does he take sugar?) , and prescribed different antibiotics and codeine  He suggested we call again in morning ( actually it was morning! ) , and get another dr out.

It was explained that Liza was leaving on sun lunch and that I would be on my own,

Well when the going gets tough you have to just sort it... I contacted friends and arranged for someone to be with me in the afternoon and someone to stay overnight.

Of course lack of sleep, stress, lack of oxygen was taing its toll and by Sun was not eating (upset tummy) and not sleeping (couldnt move in bed) and so weak I rarely managed to get myself off the toilet, and indeed had a very weird tun where the world turned into black, white and sepia and I sweated...... My head continued to spin......... In the night  J was up every two hrs. trying to help me in one way or another.

Monday, and local GP arrived and a pressure sore nurse, and a carer and a PA and the woman to shower me....  The GP  said I wasn't ill enough to go to hosp..
Once again I organised the day and night to not be alone for any long periods of time.

On Tuesday a carer  to sleep over was arranged. Poor woman had to travel from Bradford by bus. She rang from HB and didn't realise Old Town was a another bus journey away  I said get in a taxi, I'll pay. She arrived .

So last night was spent with the help of Maxine, we struggled to get my legs comfy, despite the removal of a mattress I still sink in the bed and am trapped. I couldnt breathe, couldnt move.....

The rattle from my lungs loud, my  tinnitus buzzing, and the constant drone of the bed engine, enough to make a well person scream !!

So this morning I asked for a home Dr visit. It was then found that my SATS are v low, one more point and I must go in to hospital... and the diagnosis of pneumonia given.. More , v strong ???, antibiotics and steroids.
I have never taken them before and apparently you get a buzz.. but this didnt happen to me.........
Then add into this mix Imodium as every tiny bit of food enters , then exits in 90 mins....
Another friend ,B,went for prescriptions the back down for Imodium.

I've not slept for a week , not kept any food down for a week........ and yes, I'm moaning !!!! and feeling sorry for myself and feeling hungry and tired and anxious and frightened and unsafe.......

   AND     Thanking god, that I have so many wonderful friends,  who seem determined to get me through this week.  

Thankyou, you all know who you are.

So here I am... writing all this down.

 For your enlightenment ? Perhaps ??!!!

But No! ...........Actually,  it's a cathartic exercise for myself. 

You see, If all this is in cyberspace then its away from me , and perhaps I'll get well soon !!!