CBD for me!

It’s CBD for me all the way – I discovered it about 6 months ago, thanks to a friend at the centre, and I wouldn’t be without it. I have taken it every day since then. Here is my CBD story...

It starts about 6 months ago when a nurse who used to work at my care home mentioned it to me, as she had read some of the positive news stories about it. I ordered  some cheap tablets from eBay immediately, and was somewhat disappointed when they had no affect. (I now realise that it is a mistake to buy the cheapest tablets, and that it is important to buy CBD from a reliable and trusted source).

I then spoke to a friend the centre, who was raving about the benefits she was experiencing thanks to CBD oil. I purchased some of the oil that she was using.

I noticed the benefits after only 4 days! I was delighted to find that I had a lot more energy, and was able to go for a full day out without experiencing only fatigue

Since then, I have noticed considerable other benefits, including: –

Less spasticity

Less fatigue

Shorter and less severe relapses

Improved sleep

Greater lung capacity

If you would like to talk to me further about CBD oil, I would be delighted. I am always in the atrium on Thursdays between 12:30pm and 1:15pm. Just ask Reception to point me out.

Go on, give it a go – you have nothing to lose except a few pounds.And potentially a lot to gain...

March 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

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

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

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

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 ...

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?!

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

Speaking for Myself

Language is what differentiates human beings from our animal cousins. Spoken language is the cement that binds us to other people. Communication between people is what enables cooperation, and builds civilisations. Moreover, man is a sociable animal, so we are at our happiest when with other people. Being able to communicate with them, build relationships and friendships is key.

Robbing a person of the power of speech must be one of the cruellest symptoms associated with MS. It is certainly personally, the one I dread the most.

Six months ago my lungs and speech were not in good shape. I was struggling to breathe properly and my speech was reduced to a mere whisper. My personality changed accordingly. I became very passive and introspective. Communication with other people felt like climbing a mountain, so a lot of time, I just didn't bother. It was as though I was imprisoned inside an invisible plastic bubble: inside it, to me my voice sounded perfectly normal, yet outside the bubble, to listeners, my voice was a mare squeak. I became a silent observer on the world, as it unfolded in front of me.  Emotionally, it was a real low point.

Clearly, I needed to take action. So I asked my GP to refer me to a respiratory clinic at the Oxford Churchill Hospital. I had been told that the clinic has a very good reputation.

When they saw me they ran a few tests, and measured my lung capacity as just 22%. No wonder I was struggling! I saw a very charming consultant, who felt that a Cough Assist machine would be of benefit to me. I was overjoyed at this, as I already had experience of using a Cough Assist device with spectacular results (see postings 'It's good to talk' (May 2015) and Henny Calling' (October 2014)).

I was issued  with a machine and given instructions for home use. All the carers at my care home were trained on how to use the machine – a very simple matter of placing the face mask over my nose and mouth, and switching on and off (all the correct settings had already been preset at the hospital by a respiratory physiotherapist.

My 'nippy Clearway Cough Assist' machine

I noticed improvement after only a couple of days. After several weeks of using the machine twice a day, my breathing and speech were immeasurably better. My friends kept referring to my ' new voice'. My gregarious nature was restored to me. My social life blossomed, and I revelled in my new ability to participate in group discussions and social situations. I felt confident about speaking to strangers, whether in person or on the phone. I lfelt as if I had been reborn into the human race!

After 3 months of using the Cough Assist machine twice a day, I returned to the hospital for a review. I was retested, and the good results confirmed what I already knew: –

Blood oxygen  Before  5.17

After 10 weeks  6.45

Vital capacity  0.64

After 10 weeks  0.71

Peak cough flow  Before  121

After 10 weeks  141

There had clearly been a marked improvement. Things were definitely going in the right direction, so much so, that my respiratory physio recommended I increase my usage from twice, to 3 times a day.

Unfortunately, very  little research has been done into the use of the Cough Assist machine with MS patients. However, the Oxford Churchill respiratory clinic are aware anecdotally, that the machine helps approx 3: 10 MS patients.. Of those 3 who benefit, it helps them (like me) rather a lot. The MS Society estimates there are 127,000 people in the UK with MS. Let's say about 50% of them may have lung, breathing or speech difficulties. If 33% of them could benefit from using a Cough Assist Machine, that's a potential 20,995 people who could benefit from the device.

If you are a person with MS reading this, and you have lung, breathing or speech difficulties, it may be worth exploring whether or not a Cough Assist machine, or similar device, could help you. If this is the case, I suggest in the first place that you speak to your GP and ask them to refer you to a respiratory specialist, who could advise on the best course of action.

Good luck!

Henrietta Whitsun-Jones

Reiki Rocks!

Whatever helps, is okay by me, when it comes to MS. Whether it's massage, marijuana, acupuncture or communing with pixies from outer space. If it helps, then it must be okay. However, what's good for the goose is not always good for the gander. In other words, not everything helps everyone

I know that many people with MS swear by hyperbaric oxygen therapy. Recently I tried it, and found no benefit whatsoever. I was disappointed. However, life often has a funny way of putting you in just the right place at the right time unexpectedly. That's what happened to me, when I tried Reiki therapy, instead.

My very first session blew my socks off! I had so much energy for 3 days, that I had trouble getting to sleep. This is a woman who normally nods off in front of the telly by 8 PM. My muscle spasms were about 80% better!  My body went through a 3 day detox, I drank like a fish, yet went to the toilet normally.   I couldn't believe how much the Reiki affected me.

So what actually happens during a session? Well, my therapist, Sabina, treats me while sitting in my wheelchair. Sometimes she puts her hands on me, and it's amazing to feel how hot and full of energy they are. At other times she simply hovers her hands a few inches from my body. It's as simple as that!

For me, having Reiki is a bit like being struck by a lightning bolt, but in a good way. The therapist is like a lightning conductor:channelling raw energy, converting it into something helpful and healthful, and skilfully directing it to where it is most needed in the body. When Sabina holds her hands a few inches from my eyes, I feel the heat and energy from her hands particularly intensely.

With my eyes closed, sometimes at this point, I see colours or I am aware of a bright white light bathing my whole body.

Afterwards, I feel like I have had 2000 volts of energy pumped into my body.  People tell me I look 'fantastic', if a little wild-eyed (pupils dilated, looking very ''awake'). I find that I can then slowly release that energy throughout the week, until I see my therapist again, for another charge.

One of my biggest problems, as an MS sufferer, is fatigue and lack of energy. This tends to accumulate throughout the day. By the evening, I am always in bed, and usually nodding off in front of the telly.

Therefore all the extra energy that Reiki sessions are giving me, is so very welcome. I find that I am able to be awake, alert, and talkative, way into the evening. This has greatly improved the quality of the time I spend with my son and daughter who usually visit me in the care home in the evening.

Since having Reiki as well as having far less fatigue, I have also experienced many other benefits: general body detox, reduced muscle spasms, improved bowel function, improved skin condition (sometimes the skin on my bum threatens to break down due to sitting in my wheelchair for long periods).

We respond to treatments in different ways. Others may not get the same  wide-ranging benefits from Reiki that I experience. However, one thing I can say, is that if whatever works is okay, then Reiki is more than okay by me

April 2017

Hygge New Year!

December 2016

This Christmas and New Year in the UK, all trendy people want to be Danish.  All things Danish are the height of fashion: Danish food, Danish fashion, Danish TV drama, Danish culture.

Good news for me, being half Danish thanks to my Danish mum. So I am officially half trendy!

My great grandfather, 

Hans Christian Hansen, taken at his wedding, circa 1895. He was a farmer. 

His  wife, Anna Grapp. She was Prussian. Family folklore says she died ypumg of a broken heart (she lost baby twin boys).

There has certainly been a Scandi-Christmas theme in the frosty air recently. Perfect for this time of year. You know the kind of thing: firtrees covered in snow, reindeer, log fires, trendy Scandinavian knitwear ... that kind of thing.

Hans aged about 50, circa 1915 as my mum would have known him as her 'Farfar' or grandfather, specifically 'Father's Father.

But what everyone is talking about more than anything  is hygge, a Danish word and cultural concept.  Hygge has no single English translation. Instead many words describe it such as cosiness, charm, happiness, security, familiarity, comfort, reassurance, kinship, and simpleness.  A very simple act, such as lighting a candle in a window, can evoke hygge: making a simple moment of the now, special and beautiful.  

To me then, hygge is a form of Scandi-Mindfulnesss, something simple, beautiful and special that is available to all of us, all of the time.

My very blonde mum, aged 7, circa 1937. She is with brother, sister, friend and family dog. She was brought up mostly on her grandfather's farm, in Farsø (Note the thatched farmhouse in the background).

Strangely, I feel more and more Danish the older I get. A bit like a piece of Danish Blue cheese: more and more blue veins, deeper and more mature – and certainly more smelly!

Mum being glam showgirl here, at 29 in 1955. In a West End production of 'Kismet' (she was a trained classical singer). She fell for her leading man, my dad, who was playing the evil baddie, the Wazir. 

My mum age of 35, in 1961, being an English housewife, mother and Maggie Thatcher lookalike!. Her first born is me!

Mum aged 51, in 1977, with her 2 teenage daughters, on the way to Denmark for a family visit. My sister is 14. I am 16 – punk has just exploded, and so has my hair!

You can find out more about hygge  from this excellent (and funny)  article in the Telegraph newspaper: – http://www.telegraph.co.uk/wellbeing/mood-and-mind/Danish-cosy-hygge-lifestyle-cosiness-winter-warmth-Nordic-Danes-Scandi-home-interiors/

Mum at 76, in 2002, on Brighton seafront.  She was born in Aalborg, north Jutland. My children know her affectionately as Mormor (literally, 'Mother's Mother'). 

I had the best Christmas present ever in December 2016, when I met my mum in a cafe. This was our first meeting in 3 1/2 years!

It only remains for this piece of Danish Blue to wish everyone, wherever we are, a very happy and hygge New Year!

Henrietta Whitsun-Jones

Letter from America

Now that a  little time has elapsed, since the shocking events of the US elections, it is perhaps time to reflect on those events. Consequently I feel it is important to share the moving words below. 

I have been trying to comfort a dear friend who has the misfortune to live in Florida! She is half Cuban, is an MS comrade and shares my liberal/socialist tendencies. The poor girl is beside herself with grief at recent events.  She and her (largely Hispanic) friends, are trying to find solace wherever they can.

She forwarded me the email below, which is really rather beautiful.  It certainly touched me deeply, and reminds me that not everyone in America is busy polishing an AK-47 that is stashed it in the garage.

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

Who do I want to be in this situation? 

Dear Ones:

Good morning. 

As Beyonce once sang, "We woke up in the kitchen, saying 'How the hell did this shit happen?'"

Oh baby. 

I did not want this outcome. I did not expect this outcome. I did not in any universe imagine that this outcome ever could have occurred — and the fact that I did not imagine it as possible means that clearly I have been out of touch with the hearts and minds of millions of my fellow Americans. I cannot say that I understand them. I certainly don't agree with them. And yet this is the world we wake up to today. 

OK. 

Every single day, you must face whatever world you have woken up to — whatever that may be. That's the only world you get. You must start there. 

Let me tell you what happened in our home last night.

I settled in with Rayya, to watch the returns — relaxed and certain that we were about to watch a historic and joyful moment: The election of the first woman to the presidency of the United States of America. Then it all started to slide. Then came the stress. Then came the growing anxiety. Then the panic started. Then: FLORIDA. (Always Florida. What are we gonna do with you, Florida?) Everyone I follow on Twitter was suddenly hysterical. Text messages of horror started flying around across the world. (Never have I seen so many "WTF's" fly across the screen of my phone.) The global financial markets began to collapse. Foreign leaders started losing their cool. 

Around 11pm, I found myself in this state: Huddled on the couch in the fetal position, clutching a pillow, eyes wide, speechless, paralyzed with fear. 

That's never good, right? 

I've been there before, and that is NEVER good. 

At that moment, I closed my eyes and asked myself to observe what was going on my physical body — my animal body. What I felt was a sickened stomach, shaking hands, a clenched chest, shallow breathing, a wild and uncontrolled mind, and an elevated heart rate. This is exactly what happens to an animal when it is being hunted.

At that moment, I asked myself, "Is this a helpful response, Liz?"

Nope.

If I believe that I am here to serve the world (and I DO believe that I am here to serve the world), then how does it help anyone if I am feeling and acting like a hunted animal? Answer: It doesn't help. Feeling hunted and trapped doesn't serve me, and it doesn't serve anyone.

This is when Rayya and I made a decision to turn off every single electrical device in the house and GET REAL. We stepped away from the television, from the social media, from the phones. Because we knew that RIGHT NOW, we needed to find calm. These are the moments when it's time to find out who you really are — and who you can really be.

We lit a candle, sat with each other in quiet prayer for a while, and then we each asked aloud the big question: "Who do I want to be in this situation?"

This is a question that we ask in our house a lot these days. This is a question Rayya has taught me over the years to always ask myself, when shit goes down, or when the world goes crazy, or when the panic starts to rise: "Who do I want to be in this situation?"

This is the question that Rayya and I asked of ourselves six months ago, when the doctors found signs of tumors on Rayya's pancreas and liver, and it didn't look good. I remember the day she went in for her CT scan, to confirm just how bad the situation really was. We woke up that day in a panic. We were both experiencing the standard human response to scary situations. We were undone. We both felt like: "We are terrified and anxious, and we will be terrified and anxious until we find out the results of this CT scan. We will not be at peace until we know what's going on. And if the results are horrible, we will totally fall apart."

But then we stopped, checked ourselves, and we asked, "REALLY?" 

Was that true? Was it true that we could not be at peace RIGHT NOW — even if we didn't know the outcome, or even if the outcome promised to be horrible?

So we got really quiet that day, and we each asked: "Who do I want to be in this situation?" 

The answers came, same as ever:

Calm.

Strong.

Open-hearted.

Curious.

Generous.

Wise.

Brave. 

Humorous. 

Patient. 

Once we answered that question, we found our peace. Because THAT PART was up to us — who we would decide to be, regardless the outcome. And once we found our center again, we were able to walk into that hospital with relaxed breathing, clear eyes, steady hands, and resolute hearts. We were able to find peace BEFORE we even knew the results. And a few days later, the results came: CANCER. Not just any cancer, but terminal cancer! But by that time, we were were at peace. We were ready, because we knew who we were. And once again, facing this difficult situation, the only question on the table became, "Who do I want to be in this situation?"

That is the only question that EVER really matters. 

I insist that we can learn — with practice — how to choose our emotional state in all situations. This has to be true. If this isn't true, then we are TRULY AND THOROUGHLY FUCKED — because our state of being is literally the only thing in this world that we can control. 

This is not denial. This is not complacency. This not me cheerfully saying, "Oh well! I'm sure everything will be fine!" Sometimes things are not fine. Sometimes the diagnosis is terminal cancer. Sometimes the dark forces win. Sometimes the outcome is dreadful. 

But all our practices in peace and grace and equanimity and courage are for TIMES LIKE THESE — for times when you do not get the outcome that you want. This is when it matters. When the shit goes down, and the shit goes wrong, and when the shit gets real — that's when the shit gets interesting. That's when the test comes: Who will you be now? Right now. Right this moment. Because that's the only part that is up to you. 

So last night, Rayya and I decided to go to sleep without waiting up to find out who won the presidency. We decided to keep the phones off, and the TV off. We decided to step away from the burning vehicle of global panic. We decided that — when the world is trampling itself in a stampede of fear and anger — we will not join the stampede. In the same way that we decided six months ago to find peace in our hearts BEFORE we got the biopsy results, we decided last night to find peace in our hearts BEFORE we got the election results. 

We prayed and mediated and coached each other through until our hearts and minds and bodies were at peace. Then we woke up to THIS world, and the same question as ever: "Who do I want to be in this situation?"

Calm.

Strong.

Open-hearted.

Curious.

Generous.

Wise.

Brave. 

Humorous. 

Patient. 

Decide who you will be today, Dear Ones. RIght now. DECIDE. You can do this. This is what all your training and practice has led you to. Show the people around you what a calm and peaceful strong mind looks like. (Trust me, they need it. They already know what a panicked mind looks like; show them what a calm mind looks like.) Ask yourself again and again who you want to be, and believe that you can be it. 

Nobody gets to take your emotional state away from you, unless you give it to them. 

This is how you lead. This is who you are. This is how you BE. 

Here we go. 

ONWARD,
LG