Sunday, 5 November 2017

TAKING THE PLUNGE - Temporarily Removed.


This post has been temporarily removed for "housekeeping". 

i.e. correcting Henny's naughty typos, howlers and repititions!!!

Sorry, back soon.

Henriietta Whitsun-Jones

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

Tuesday, 16 May 2017

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

Tuesday, 18 April 2017

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

Sunday, 1 January 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: –
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

Sunday, 20 November 2016

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. 
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?"
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:
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?"
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. 


Sunday, 16 October 2016

I am a Shrew and Proud of It

October 2016

Shakespeare would have thought me a shrew. A what, you ask? A small,
furry animal? No. Nowadays we would say a woman with 'attitude', a bit lippy, mouthy, gobby (or, if feeling particularly uncharitable a bit of a 'gobshite'). The Wikipedia definition of a shrew says,"the figure represents "insubordinate female behavior" in a marital system of polarised gender roles that is supposedly male dominated in a moral hierarchy. " Clearly, the shrew and the feminist are sisters. 

In medieval England a woman could be prosecuted as a nag or 
scold and sentenced to public humiliation and torture by wearing a 'scold's bridle', an iron muzzle in an iron framework that enclosed the head. A bridle-bit (or curb-plate), about 2 inches long and 1 inch broad, projected into the mouth and quite literally, 'held one's tongue'. 

 'scold's bridle'
As a child I was not especially troublesome, but I was fascinated by naughty girls.  Favourite books were the My Naughty Little Sister series. 
My Naughty Little Sister book series by Dorothy Edwards
 A favourite movie was the black and white 18th-century historical drama, The Wicked Lady which featured a dashing aristocrat, played by Margaret Lockwood, with her secret identity as a notorious highway woman.

Margaret Lockwood as the Countess
in  The Wicked Lady              
Margaret Lockwood in her hair highway woman disguise

My real life naughty little sister and I were co-conspirators in most things. We had a secret club, the wigga-wigga club. If one was in a naughty mood, making the secret sign to the other sister, was a signal to get together in private as soon as possible, in order to hatch some mischief. 

This may or may not have involved the 'witch kitch', a hidden and private area of the front yard, where low walls at a convenient child's waist height facilitated the cooking up of all manner of disgusting potions in stolen cooking pots. Dried up dog poos were collected from the pavements and crushed up with poisonous holly berries and curry powder, pilfered from the kitchen.  Adding water then made a delightfully poisonous and gloopy potion, which could then be flicked at the kids next door, or spattered over the next door neighbours'  windows.

I remember being taken to see the 1967 version of The Taming of the Shrew starring Richard Burton and a luminous Elizabeth Taylor.  Most of the action involves the highly entertaining misbehaviour of the fiery Katherina, the shrew.  However, the story ends with a downtrodden, exhausted and compliant Katharina who has been 'tamed'. This little girl felt thoroughly cheated, and wanted her money back.
Elizabeth Taylor as the fiery Katharina in The Taming of the Shrew

I think I was born a feminist. Only I didn't know it until, after a stormy and rebellious adolescence (oh my poor mum!), I reached Manchester University in 1982 where I became politicised.  On finishing my degree, I co-founded a 4 piece women's theatre company called Red Stockings, touring agitprop feminist cabaret throughout the North West and then nationally. Our administrative HQ was in a women's centre, the sumptuously converted childhood home of Sylvia Pankhurst, the Pankhurst Centre. According to the zeitgeist of the decade, I merrily campaigned and protested my way through the '80s. 

The role of women in society has changed immeasurably throughout my life so far. A recent phenomenon has caught my interest – the bitch-slap. One of the carers where I live I regard as the World Authority on this matter, so I   asked her,  "What is the difference between a slap and a bitch-slap?"."Oh a lot", she said. "Wid a bitch-slap dere's a backswing.  Dere's a lot more force. We're talkin' vi'lence!". Fascinated, I probed a bit further, "And can you bitch-slap anyone, man or woman? ". "Yes, but usually it's men, cos dey need keepin' in line. De only peops ya don't bitch-slap is children". The bitch-slap is not gratuitous violence or administered in the heat of the moment. Rather, it is a considered punishment which has somehow been deserved. Moreover it is a singularly female expression of displeasure. Strange to think that not so long ago, just punishment was purely the domain of men and never women. A bitch-slap would have been extremely unseemly and un-feminine. 

Oh, how the tables have turned. The shrew has finally used her sharp little teeth.

Henrietta Whitsun-Jones