Sunday, 19 January 2020

A la recherche de temps perdu


I feel pretty good about myself. This is despite the devastation that 20 years of primary progressive MS has wroughd on my poor, beasieged body. Despite this, my self esteem is intact, and in good health.

For the last 7 years I have lived in a nursing home, where I have had a wonderful quality of life. I am looked after by kind, friendly and conscientious people. If I need to go somewhere, transport is provided free of charge. I can order guest meals for visitors at no extra charge. I am very important fortunate to have a self contained flat, one of only 2 in the building. I have a large bed/sitting room, plus a spare guest bedroom for my children to come and stay. It has 3 windows, so is flooded with natural light. I have been able to decorate as I choose.

This is all in stark contrast to my previous life at home. Unfortunately, although I was with my beloved children, my ex-husband made life   hellish as he could. His rage at my MS meant that I had no space to think about how I felt about being ill. I was too busy fielding his rage at me. He confused me with my MS: they are not the same thing at all.

He never abused me physically, however the emotional and mental abuse I suffered, was terrible. He would frequently turn out the light, and leave me sitting on a toilet in the dark. I never knew when, or if, he would return. The daytime he spent  brooding in his bedroom upstairs, and I never saw him until the evening, when he would appear and watch TV with the family. I drank vats of red wine, to numb the discomfort at his presence. He frequently told the children in front of me, that I was clinically insane, and should be ignored. Luckily, they ignored him. My response was never to shout (I didn’t want the children to see endless shouting): instead, I would simply take the piss out of him, and ridicule him wildly.

At night, I slept downstairs in the lounge whilst he disappeared upstairs to his bedroom, taking one of the dect handsets for the phone with him. Usually, he would turn this off, so if I needed help in the night, that was just tough. Woe betide I should ever be ill. In that case, I was told how disgusting I was, especially if diarrhoea was involved. He once suggested that I should swallow my own vomit , in order to make less mess.

One night he got extremely drunk at a local fete. I was seriously concerned about how he would put me to bed, so I slapped his face gently, in order to try and sober him up a bit. He whacked me back so hard, I thought my head would fall off. I immediately phoned the police.

A very lovely woman police officer arrived, and kindly and gently put me to bed. I felt awful that the children had looked on, with eyes as wide as sources.

Once I agreed to move into care, he would frequently tell me “you’d better shut your mouth – I could have you in care in a week, if I wanted”.

After transferring to the nursing home, I was desperately miserable, and cried myself to sleep every night for three months. Once I had settled down, I realised it was in fact, the best thing that’s could I have happened to me. I had successfully gotten away from him.

Sadly, I don’t think my experience is unusual, amongst people diagnosed with MS. I heard a shocking statistic – that 50% of married people with MS Break up within 2 weeks of diagnosis. Given that 2 out of every three 3 three people with MS are women, this means that it is women who are being dumped. Men simply cannot cope. If the support for people who are newly diagnosed was better,perhaps things would improve.

I look back on that bleak period with some sadness. At least I was with my beloved children, who were still at primary school. What I cannot forgive him for, is taking away ruining 4 years of their childhood, when family life could  have been so much better.

At least we are making up for lost time now. They both seem to have turned out brilliantly, as kind, funny and intelligent human beings

January 2020

Sunday, 30 June 2019

EVERY BREATH I TAKE

This little video (11 mins) tells the story of me and my MS, from the standpoint of my breathing and speech difficulties. I guess it may be of interest to people with similar problems. I hope you enjoy watching it, as much as I enjoyed making it

Watch it now by doing this -

Click this -

https://www.dropbox.com/h

Use these -

user - jamie@boundaryless.co.uk
Password - everybreath



Wednesday, 20 December 2017

THE 12 DAYS OF CHRISTMAS Final draft

Here’s a little Christmas present from me to all the members.

I wrote this mini-panto in one scene, for your entertainment over the holiday period. 

When you read it, I think it’s most fun, if you imagine your 2 favourite male Centre staff in the lead roles (perhaps Robert and Ant or,Andrew and Aaron?). 

I would like to wish all the members a very Merry Christmas and new year. See you in 2018!

THE 12 DAYS OF CHRISTMAS 
              by Henrietta Whitsun-Jones


(Estimated running time 35 - 45 minutes)
--------------

  Characters: Dame Cillit (The elder, bossy, a bit of a prude
                       Dame Bang, her younger sister, confident that she is more attractive though that's not necessarily true, cheeky, likes sex)

-----------------

Dame C: Ladles and jelly spoons. Welcome!

Dame B: girls and boils. Nice to see you ... To see you (motions to audience as they shout "Nice!")

Dame C: Welcome to the Brunel Christmas party.  My name is Dame Cillit.

Dame B:  and I'm Dame Bang, Her sister 

I'm the pretty one, by the way

Dame C: Oh, you are are you? Well, we'll see about that!

Anyway, enough of your bitching,  dear    I 
was busy talking to these lovely people. I should explain that we've escaped from Jack and the Beanstalk round the corner, during the interval, so we can come and have some festive fun with you lot. 

Dame B: we thought it would be nice to have a sing song together.  

Are you all feeling in good voice?

 (Cups hand to ear)

(Louder) I said, are you all feeling in good voice?

(Cups hand to ear)

Dame C: But before we get singing we need to get in the mood and get festive.   My sister and I are going to come round and give out some Christmas crackers. 

(They go amongst the audience and give each person 2 Christmas crackers)

 Dame B: Has everyone got a cracker?  If not, then hold your hand up

(They give out any missing crackers). 

Now what I would like you to do is this:  after I count to 3, turn to your neighbour, shake them by the hand and wish them a very Merry Christmas.   Then you can pull the cracker, and make sure to put on the party hat.  And make sure you've pulled a cracker with both your neighbours. 

Ready?   Here goes then.  One, two, three!

(Pause while the audience pulls crackers). 

Dame C: Well done everybody! I must say, you all look absolutely super.  Are you ready to start singing now?

(Cups hand to ear). 

(Louder)

I said, are you all ready to start singing now?

(Cups hand to ear). 

Good.  Now where's that song sheet I brought? Where did I put it? It looks like a big rolled up piece of paper. Have you seen it?

 (Exaggeratedly mimes hunting high and low for the song sheet.  Looks everywhere except behind her). 

Where? Here? Where?

Oh, here it is! Now why didn't you just say so?

Why don't you use this festive looking stick to point to  the words, so we all know what we are singing?

Dame B: Okay good idea. 

Dame C: And watch where you're putting that thing!

(Dame B looks at the audience with a big grin grin as if to say "shall I? ")

(Dame C  bends over to tidy some rubbish into a basket. Dame B pokes her up the bum with the stick). 

Dame C: Ooh! What was that?!  I felt a little prick. 

Dame B: (Aside to the audience)

Dame B: The first in a long time, I assure you. 

 (Dame C bends down again to do more tidying). 

Dame B: Pokes her again Dame C, holding her 
bottom)

Dame C: There it was again! An even bigger prick!

Dame B: I think it's time we got on with some singing. Ready?  The words go with the tune of the 12 days of Christmas.  After three then. One, two, three. 

(They sing the song). 

On the first day of Christmas my true love gave to me, a
pair of Siamese twins

On the second day of Christmas my true love gave to me,   on willies

On the third day of Christmas my true love gave to me 3 thermal vests

On the fourth day of Christmas my true love gave to me 4 Lion bars

 On the fifth day of Christmas my true love gave to me 5 onion rings

On the sixth day of Christmas my True love gave to me,  6 physios phys-ing

On the seventh day of Christmas my true love gave to me, 7 volunteers

On the eighth day of Christmas my true love gave to me 8 MPs lying

On the ninth day of Christmas my true love gave to me 9 fondant fancies

On the 10th day of Christmas my true love gave to me 10 carers caring

On the 11th day of Christmas my true love gave to me 11 maids a-Twerking

On the 12th day of Christmas my true love gave to me 12 Santas Santing

Dame C: Well done everybody! Especially this side of the room – MY Half. You were definitely louder. 

Dame B: Bullocks! MY Half were clearly the stronger singers. I would give them all a chair if I could. 

Dame C: Well, there's only one way to find out ...

(In unison, to the audience)

 Both: Sing off!

Dame C: Here's how it's going to work. We'll all start off singing the first day of Christmas together, then my half of the room will sing the second and third day
  
Dame B: Then my half will take over and sing the
 fourth day of Christmas. 

And we'll all come together for the fifth day, with 5 onion rings. 

Dame  C: Back to my half of the room for days 6 and 7. 

Dame B: Swap back to my half for  days 8 and 9. 

Dame C: Days 10 and 11 will be taken by my half.

 Dame B: Then we'll all come together and finish off with the 12th day of Christmas. Okay? Ready? One, two, three. 

(They all sing the song, this time as the sisters have described). 

 Dame C: Fantastic! Give yourselves a big clap.  Now for a judges conference, I think. 

(They go into a huddle for a moment)

Dame B: We'd like to announce that the sing off was officially

(In unison)

Both: A draw!

Dame C: Now we'd like each half of the room to send up a volunteer to claim a special prize. And the special prize is ...

Dame B:  A Christmas kiss with none other, than our lovely leader of the physio team, Judith!

Dame C: Perhaps we should show them the prize. What do you think?

Dame B: Judith sweetheart, would you like to come up and join us please?

(Pause, while Judith joins them)

Dame C: Now come along, don't be shy. Put your hand up if you would like to volunteer. 

 (They choose 2 male volunteers from the audience). 

(To the first volunteer)

Dame C: Now, what's your name, Sir?

Volunteer 1: XXXX

Dame C: Hello XXXX. Are you ready to claim your prize, and give Judith a big Christmas kiss?

Dame B: You're well in there, mate. Cos from what I hear, she's absolutely gagging for it!

Dame C: How dare you talk about our Judith like that! Show some respect! Any more sexual harassment min the workplace from you and it will be the naughty chair for you!

(Turns to second volunteer)

Dame C: and what's your name, sir?

Volunteer 2: XXXX

Dame C: Hello XXXX.  Are you ready for your prize?

Dame B: pucker up then. Absolutely no tongues!

Dame C: That's it! I've had enough! Naughty step. Now!

(Dame B mumbles to self as she goes, "it's not fair that you get to boss me around, just because you're older". She hangs her head and goes and sits on a chair in the corner).

Dame C: let’s here a big clap for Judith and our volunteers. (To the volunteers:) you can go and sit down now. (Looks at watch)   Gosh! Is that the time? 

 Bang!

The interval must be nearly over

(Louder)

Bang!

We'd best be off   We'll miss our next entrance. 

(Even louder)

Bang!

Dame B: What are you banging on about now?

Dame C: Come on! We'd better shift ourselves. Time to go!

Dame B: Alright, alright.   Keep your hair on.  I'm coming. 

Dame C: Well I must say, i've really enjoyed your Christmas party. Thanks so much for having us. 

Dame B: You forgot to wish them Merry Christmas. 

Dame C: How could I forget?  A very Merry Christmas to you all. 

Dame B: And a happy new year

(They exit, piggybacking). 


Henrietta Whitsun-Jones

Wednesday, 13 December 2017

THE 12 DAYS OF CHRISTMAS

THE 12 DAYS OF CHRISTMAS 

by Henrietta Whitsun-Jones

(Estimated running time 35 - 45 minutes)
--------------
  
  Characters: Dame Cillit (The elder, bossy, a bit of a prude
                       Dame Bang, her younger sister, confident that she is more attractive though that's not necessarily true, cheeky, likes sex)

-----------------

Dame C: Ladles and jelly spoons. Welcome!

Dame B: girls and boils. Nice to see you ... To see you (motions to audience as they shout "Nice!")

Dame C: Welcome to the Brunel Christmas party.  My name is Dame Cillit.

Dame B:  and I'm Dame Bang, Her sister 

I'm the pretty one, by the way

Dame C: Oh, you are are you? Well, we'll see about that!

Anyway, enough of your bitching,  dear    I 
was busy talking to these lovely people. I should explain that we've escaped from Jack and the Beanstalk round the corner, during the interval, so we can come and have some festive fun with you lot. 

Dame B: we thought it would be nice to have a sing song together.  

Are you all feeling in good voice?

 (Cups hand to ear)

(Louder) I said, are you all feeling in good voice?

(Cups hand to ear)

Dame C: But before we get singing we need to get in the mood and get festive.   My sister and I are going to come round and give out some Christmas crackers. 

(They go amongst the audience and give each person 2 Christmas crackers)

 Dame B: Has everyone got a cracker?  If not, then hold your hand up

(They give out any missing crackers). 

Now what I would like you to do is this:  after I count to 3, turn to your neighbour, shake them by the hand and wish them a very Merry Christmas.   Then you can pull the cracker, and make sure to put on the party hat.  And make sure you've pulled a cracker with both your neighbours. 

Ready?   Here goes then.  One, two, three!

(Pause while the audience pulls crackers). 

Dame C: Well done everybody! I must say, you all look absolutely super.  Are you ready to start singing now?

(Cups hand to ear). 

(Louder)

I said, are you all ready to start singing now?

(Cups hand to ear). 

Good.  Now where's that song sheet I brought? Where did I put it? It looks like a big rolled up piece of paper. Have you seen it?

 (Exaggeratedly mimes hunting high and low for the song sheet.  Looks everywhere except behind her). 

Where? Here? Where?

Oh, here it is! Now why didn't you just say so?

Why don't you use this festive looking stick to point to  the words, so we all know what we are singing?

Dame B: Okay good idea. 

Dame C: And watch where you're putting that thing!

(Dame B looks at the audience with a big grin grin as if to say "shall I? ")

(Dame C  bends over to tidy some rubbish into a basket. Dame B pokes her up the bum with the stick). 

Dame C: Ooh! What was that?!  I felt a little prick. 

Dame B: (Aside to the audience)

Dame B: The first in a long time, I assure you. 

 (Dame C bends down again to do more tidying). 

Dame B: Pokes her again Dame C, holding her 
bottom)

Dame C: There it was again! An even bigger prick!

Dame B: I think it's time we got on with some singing. Ready?  The words go with the tune of the 12 days of Christmas.  After three then. One, two, three. 

(They sing the song). 

On the first day of Christmas my true love gave to me a
pair of Siamese twins

On the second day of Christmas my true love gave to me 2 strap on willies

On the third day of Christmas my true love gave to me 3 thermal vests

On the fourth day of Christmas my true love gave to me 4 Lion bars

 On the fifth day of Christmas my true love gave to me 5 onion rings

On the sixth day of Christmas my true love gave to me 6 choppas choppa'ing

On the seventh day of Christmas my true love gave to me 7 cars a-honking

On the eighth day of Christmas my true love gave to me 8 MPs lying

On the ninth day of Christmas my true love gave to me 9 fondant fancies

On the 10th day of Christmas my true love gave to me 10 carers caring

On the 11th day of Christmas my true love gave to me 11 maids a-Twerking

On the 12th day of Christmas my true love gave to me 12 Santas Santing

Dame C: Well done everybody! Especially this side of the room – MY Half. You were definitely louder. 

Dame B: Bullocks! MY Half were clearly the stronger singers. I would give them all a chair if I could. 

Dame C: Well, there's only one way to find out ...

(In unison, to the audience)

 Both: Sing off!

Dame C: Here's how it's going to work. We'll all start off singing the first day of Christmas together, then my half of the room will sing the second and third day
  
Dame B: Then my half will take over and sing the
 fourth day of Christmas. 

And we'll all come together for the fifth day, with 5 onion rings. 

Dame  C: Back to my half of the room for days 6 and 7. 

Dame B: Swap back to my half for  days 8 and 9. 

Dame C: Days 10 and 11 will be taken by my half.

 Dame B: Then we'll all come together and finish off with the 12th day of Christmas. Okay? Ready? One, two, three. 

(They all sing the song, this time as the sisters have described). 

 Dame C: Fantastic! Give yourselves a big clap.  Now for a judges conference, I think. 

(They go into a huddle for a moment)

Dame B: We'd like to announce that the sing off was officially

(In unison)

Both: A draw!

Dame C: Now we'd like each half of the room to send up a volunteer to claim a special prize. And the special prize is ...

Dame B:  A Christmas kiss with none other, than our lovely leader of the physio team, Judith!

Dame C: Perhaps we should show them the prize. What do you think?

Dame B: Judith sweetheart, would you like to come up and join us please?

(Pause, while Judith joins them)

Dame C: Now come along, don't be shy. Put your hand up if you would like to volunteer. 

 (They choose 2 male volunteers from the audience). 

(To the first volunteer)

Dame C: Now, what's your name, Sir?

Volunteer 1: XXXX

Dame C: Hello XXXX. Are you ready to claim your prize, and give Judith a big Christmas kiss?

Dame B: You're well in there, mate. Cos from what I hear, she's absolutely gagging for it!

Dame C: How dare you talk about our Judith like that! Show some respect! Any more sexual harassment min the workplace from you and it will be the naughty chair for you!

(Turns to second volunteer)

Dame C: and what's your name, sir?

Volunteer 2: XXXX

Dame C: Hello XXXX.  Are you ready for your prize?

Dame B: pucker up then. Absolutely no tongues!

Dame C: That's it! I've had enough! Naughty step. Now!

(Dame B mumbles to self as she goes, "it's not fair that you get to boss me around, just because you're older". She hangs her head and goes and sits on a chair in the corner).

Dame C: let’s here a big clap for Judith and our volunteers. (To the volunteers:) you can go and sit down now. (Looks at watch)   Gosh! Is that the time? 

 Bang!

The interval must be nearly over

(Louder)

Bang!

We'd best be off   We'll miss our next entrance. 

(Even louder)

Bang!

Dame B: What are you banging on about now?

Dame C: Come on! We'd better shift ourselves. Time to go!

Dame B: Alright, alright.   Keep your hair on.  I'm coming. 

Dame C: Well I must say, i've really enjoyed your Christmas party. Thanks so much for having us. 

Dame B: You forgot to wish them Merry Christmas. 

Dame C: How could I forget?  A very Merry Christmas to you all. 

Dame B: And a happy new year

(They exit, piggybacking). 

Henrietta Whitsun-Jone

Tuesday, 12 December 2017

FESTIVE FUN AT THE SOCIAL GROUP

December 2017

I dropped in on the Centre‘s Social Group in November. I should have taken some Kleenex with me, because I laughed till I cried!
  
good company and laughter at the Centre‘s Social Group


It was such an indulgent pleasure, just to share a cup of coffee and a chat with some lovely people. We played some great games too - simple entertainment, but so very enjoyable, and full of fun and laughter.

The Social Group is a very relaxed and welcoming environment for all, no matter what your level of disability (there are always plenty of volunteers eager to help in any way that will make it possible for someone to join in, whether it’s playing a game, or drinking your coffee.

There are always different people coming along, not just the regulars. So everyone is given a warm well come equally. Carers, are, of course, most welcome too.

Peoplec tend to come along for whatever time they have available between 10 AM and 12 PM.

So why not join the Social Group’s Christmas Party on Thursday 21st December 10 AM till 12 PM. Expect festive games and yummy seasonal snacks - and plenty of fun!

All you need to do, is to wear something Christmassy, and a big smile ...

Sunday, 5 November 2017

TAKING THE PLUNGE

November 2017

Water seems to have a miraculous, and therapeutic, effect on the human body. I know it does for me. I feel more relaxed and more interested in movement. Since I have had MS, being submerged in water makes movement much easier as the weight of my body is already supported by the buoyancy of the water

So I jumped at the chance of trying hydrotherapy at the Centre when the physio team offered me an 8 week course.
I was asked to bring 2 volunteers with me, to get changed and showered, before and after. I asked  a team of 3 friends who were happy to oblige.

I admit I had a few niggling little anxieties: did the physio team have experience of dealing with a wheelchair user like me, in the pool? After all, I have just limited movement in my right arm and hand, pus good head movement: how would I cope with being in the water?  My confidence level was not high. 


However, I need not have worried. Everything went swimmingly!I felt totally comfortable and very relaxed in the lovely, warm water.
I felt completely safe and supported by my physio, who was clearly highly trained and very experienced. Changing was a breeze with my volunteer friends who managed the manual handling with ease (one was a retired nurse, and one was a retired professional carer, so perfect for the job!).

Week by week I saw improvements: better breathing and better
sitting posture in my wheelchair. I certainly enjoyed it more and more each week. In particular, it was a real pleasure to move part of my anatomy that in a wheelchair, remains static: my pelvis!

The therapy itself progressed steadily from week to week. I was most impressed by the way my physio developed the program of hydrotherapy, constantly adding new exercises or the level of difficulty.  Meanwhile, however, things seemed to come more easily to me. My volunteer-friends were always watching, and they confirmed the improvements they clearly saw for themselves.

Overall, I loved my experience of hydrotherapy and have put my name down to repeat it sometime next year. Never has therapy been so thoroughly enjoyable!

If you would like to try hydrotherapy, speak to any of the physio team, who will be happy to make arrangements to add your name to the list. Go on, why not take the plunge?!

Sunday, 29 October 2017

I love my Life

I love living in my care home!  Life in a care home often suffers from a bad image.
However, I find just the opposite. Given the rubbish cards I have been dealt, I believe that my quality of life here is as good (or maybe even better?) than if I was able bodied.

I am very fortunate to have one of a very limited number of self-contained flats within the unit. I have a main room with kitchen, a bathroom and a small separate bedroom, where my kids can come and stay with me at weekends. Thanks to this, I have been able to maintain a close relationship with my kids over the past few years, while they grow into adulthood. I appreciate this all the more, since due to my condition, I became unable to live at home with them any longer.

My main room includes a little kitchen



Here, I have the independence and privacy I want, whilst having constant access to the care that I need. Carers visit me throughout the day at set times. Should I need help at other times of the day or night, I feel secure in the knowledge that help is only 5 minutes away, if I ring my call be

I love my little flat! It is flooded with natural light, benefiting from 3 windows. The  view from the windows is of trees in the garden below. I have been lounge given license to decorate and furnish the flat as I wish. Here, I have been able to create as homely an environment as possible, so that my kids feel comfortable and relaxed whilst visiting me. They feel as though they are visiting me in my own home, rather than a care home.

View from one of my lounge windows 


All the staff are friendly, caring and professional. Some of them have become valued friends, even after leaving the company. The staff interact with my kids in a relaxed and friendly manner - several of the carers, they know by name.

In fact, everyone I have met at this care home, no matter where they fit into the food chain, is approachable, friendly and supportive. No matter how busy their schedule, everyone has a ready smile, and makes you feel that you are important, and that they care.

I have excellent access to transport, and I am well supported in getting to medical appointments, or just out for a shopping trip.

There is a full program of activities available. So far I have been on some memorable  excursions, including Woburn Safari Park and Sealife in Birmingham. We are going 10 pin bowling later this month. Trips in planning, include Buckingham Palace and Harry Potter World.

I petted an elephant at Woburn Safari Park


18 months ago, the care home helped me to realise a dream: to design and build a small garden. I was allocated a small plot within the communal garden, and given license to develop as I wished. Gardening is my passion.. I designed a Mediterranean-style garden in miniature, and PJ Care staff built and planted it for me. Due to my condition, I am unable to tolerate hot sun for more than a few minutes. Now I have A delightful outdoor space in which to sit comfortability in my wheelchair in the shade, and socialise with family and friends. It is my pride and joy!  Also, an achievement I can feel proud of it.

My little garden and patio

 














         



 I really enjoy my meals. The food here is excellent! A special menu has been designed for me, tailored to my dietary needs and taste.

A summer lunch, Shared with a friend on my  patio





So life in care can be  varied, fun and full of love and laughter. Overall, I love my life here!

October 2017
Henrietta Whitsun-Jones