Tuesday, 20 September 2016

Why Risk is Worth It

September 2016

I really enjoy taking risks. It's just part of the blueprint I was born with. I am also a natural rebel. This means that I hate rules of any kind. Show me a rule of any type and I will want to smash it up and break it. On principle. As you can well imagine, this has gotten me into trouble at various times throughout my life.

I guess part of the reason that I like risk is because I am so familiar with it. I have spent my working life as an artist, in my case as an actor. Step out onto a stage, and no matter how many times before one has said those lines, almost anything can (and sometimes does) happen. As an actor, one is taught to embrace and welcome risk. The moment actors stop taking risks, is the moment that the performance becomes dull, listless and tired. So I suppose it is that risk to me, is the spice of life: some level of it is necessary in order to live a rich and colourful life. Think how boring and dull life would be, without it.

I think this is why I often have a problem with Health and Safety (H&S which I call Hell and Samey) which seems to want to eradicate risk from our lives altogether. You only have to say the words 'H&S' out loud to me, and I feel an instant rush of blood to my face and neck. My hackles are on 'alert' mode.

This seems to happen to me fairly often these days as I live in a care home, which is by definition, a very risk-averse and highly regulated environment.  There is a plethora of regulations and legislation that the home must comply with. That need not, however, necessarily include me. I must remember that I live with some people here who unfortunately cannot make decisions in their own best interest any longer. It is these vulnerable people that the rules and regulations are there to protect. Not me.

To give them their due, The management have always been sensitive to the fact that I am an intelligent woman with full capacity, who is strong-willed and has opinions of her own. Signing disclaimers, in order to protect the company, has become a way of life.

Around 5 years ago I jumped out of an aeroplane at 15,000 feet. This was in order to raise money for the Centre. It proved to be quite a worthwhile stunt, as I managed to raise several thousand pounds. Would I do it again? You betcha! I only wish I was able to jump out in my wheelchair. What a great photo that would make!  Not to mention some great publicity for the Centre. Especially now that I am a middle-aged woman in poor health and in a wheelchair: life has become  far too sedate and 'safe'. It needs messing up a bit.

There is usually a nugget of truth in an old axiom."Nothing ventured, nothing gained", is an old saying that this applies to. For if you make an attempt, you risk failure. However, if you do not even try then you will never know the untold riches that you may have won.

I know which I would prefer.

Thursday, 15 September 2016

Warrior sisters

September 2016

My beloved little sister and I share something. We both have MS. She has been living with the diagnosis since the tender age of 19, whereas the bomb didn't drop on me until the age of 42.

But there the similarity ends. My sister says that whilst she got the skimmed milk variety, I ended up with the full fat version of the disease.  She has the relapsing-remitting form: I have the more aggressive primary progressive type.

Between us we have 50 years of experience in managing our MS symptoms and fatigue (34 years in her case, and 16 in mine). We have had to learn the art of working within our limitations, whilst still achieving our objectives and living a productive life.  The learning curve has not always been easy.  Many a time, we have been on the brink of doing something, only to be disappointed by a spell of illness at the last minute.  In my case, the symptoms are constant, but slowly and steadily worsen over time. No sooner have I adapted to certain capabilities, then the goal posts shift, and I have to start all over again with a reduced set of circumstances. In my sister's case, the only response that is effective during a period of illness, is complete bed rest. Literally to stop everything and rest.  This is difficult for her as she has a young son to care for. Meals must be cooked, clothes must be washed and a child taken to school. Life does not stop because mummy is ill.

The area of parenting is the only one where I have sometimes felt a sense of envy towards my sister, given our different illnesses. Whereas she has been able to stay at home and parent her child as she thinks fit, unfortunately I have not. I have had to leave my home and live in a care home, and watch ruefully from the sidelines, as their father makes repeated mistakes.

There are upsides though, to this situation. I get to enjoy their company without having to police their lives as a parent normally would.

Warrior women are my favourite kind of chick.  I am extremely fortunate that both my sister and my daughter are this kind of woman. Gutsy, feisty and not afraid to fight for what she believes in, yet only punishing the guilty, never the innocent. It would be difficult to put into words how much I love, admire and respect them both.

I am very fortunate to have them in my life.

Sunday, 4 September 2016

MS Cannot Kill My Creativity

It is true to say that I have not touched this blog in a long time. This is in part because everything has become more challenging for me as my MS progresses. However, MS cannot kill my creativity Yes, it makes it more difficult for me to express it. But it is part of me. Somehow or other it will be expressed by hook or by crook. Unfortunately and, sometimes it is hard to use a mobile phone/tablet for writing. So the blog is likely to be less frequent in future. Less frequent, but perhaps better.

My creative juices have also been otherwise employed: I'll have written a Christmas panto-style entertainment for the nursing home where I live. I am hoping that this will be performed at Christmas parties. I will offer to direct, which would be enormous fun for me.

I have also been completely immersed in designing and creating a garden. The nursing home allocated me my own patch of garden within the communal grounds, and gave me permission to develop it as I wished. I used grant money from the MS. Society to fund the plants and hard landscaping materials.  Labour was provided in-house free of charge.

My intention was to create a Mediterranean gravel garden, suitable for a very dry and partially sunny plot. A maintenance free garden that would need no constant watering.

I also wanted to create a shady patio beneath a wild plum tree: a refuge from the harsh Summer sun, which my MS hates.

The garden has been really fantastic and has made my  summer. Best of all, it has been a great social space in which to lunch and spend time with friends and family.

One of the things I adore about gardens, is that they never stand still and are always changing. Already I am hatching plans for changes and improvements that I want to make next year. Gardens link past, present and future, melded together by the beauty of nature.  And they're great places to eat too!

Henrietta Whitsun-Jones

Monday, 5 October 2015


Mindfulness has been my constant companion over the past 2 years.  It has been both a rock to cling to in a storm, and a place to bask in the sun when the weather is kind.

I meditate most mornings, with only the sound of birdsong as a soundtrack. I find it sets me up for the day ahead, rather like a strong cup of coffee.

I freely admit that I have lost my way at times.  Fortunately for me, our own Trustee and Mindfulness coach, Sarah Jones, has been on the end of a phone, ready to give me a Mindfulness coaching session and set me back on the right track again. In the real world, this kind of one-to-one coaching would cost hundreds of pounds. We are very fortunate at the Centre to have Sarah as a Mindfulness resource (I know she wouldn't mind me calling her a 'resource').

At times, this journey has been a somewhat lonesome road. Looking back, I think I would have preferred to take the trip with a group if that were possible   I am told that the energy one experiences in a Mindful ness group is very different to being by oneself, and is very nurturing. Looking for a group will definitely be my next step.

I cannot now imagine life without Mindfulness. It is now a sustaining force in my life, the glue that binds all the different parts of my life together. I would encourage anyone to embark on a Mindfulness adventure for themselves, for it is truly the adventure of a lifetime.

October 2016

Tuesday, 22 September 2015


I first posted this nearly 2 years ago on January 14th 2014 as WITH NEW YEAR IN MIND (hence the Christmas theme).  I want to republish iit as Mindfulness courses are still ongoing at the Centre, thanks to Trustee, Sarah Jones. I then intend to publish an update on my Mindfulness journey. 

But first, let us go back in time.  Moreover,  I believe this is as true today as the day I first wrote it ..

January 2014

So it's all finished with for another 12 months. My sister texted me the following day to say "thank f-- for that!  It's all over for another year". 

Whether you are sad or delighted depends on several things, such as what sort of relationship to and history you have with Christmas; this seems to relate mostly to what your childhood memories of it are like. Those people who had great childhood Christmases tend to carry this on into adulthood.  The reverse is also true. This then gets passed down to their children etc, etc and so the cycle continues

At this juncture (after Christmas and around New Year) I typically find myself doing two things: reviewing how the Christmas just gone went, and looking forward into the new year and sketchily planning out a few things I want to achieve during the first few months of the year.  So I look back and then look forward, at the same time. I am quite sure that I am not alone in doing this.

This Christmas just gone was the best one I have had in years.    This, despite it being almost a year exactly that I have been living away from home in a nursing home.  The prospect of Christmas was looming large and making me quite tearful and full of dread.  I was gearing myself up for a disastrous first Christmas here. A travesty of the warm and homey Christmases I had now lost forever. I had constructed the complete, disastrous scenario that was to take place.

Then I thought no!  Hang on a minute. This could, if I let it, be the best Christmas in ages because we are all free.  Free of all the limitations of looking after a sick person that being here, in a nursing home, has taken away because it is someone else's responsibility. For the first time in ages we could concentrate on enjoying being together and having fun.

And guess what, we did.  It really was the best Christmas we have had in a long time
But how was I able to achieve this quantum shift in perspective?  The answer is very simple: through something called Mindfulness that I have been introduced to through the Centre. 

What is Mindfulness then?  It is a toolkit of techniques that you can learn, including daily meditation, which together train your brain into a new way of thinking that is far more positive.  It is a technique that has been honed over many years into an eight week course and is delivered through a book and CD which are used in conjunction. The book explains the theory and the CD delivers the daily meditation practice which you are guided through.  It really was as simple as that  [for me] but as with all things it is the simplest things that are the hardest. And so yes,  I found it very difficult at first.  I found it hard to concentrate and that my mind kept wandering. Perseverance is necessary but improvement and therefore encouragement come quickly.  It can also be very helpful at times like this to have someone else to be in touch with in order to compare notes and offer mutual support.

My personal experience has taught me that what you really need in order to take up Mindfulness most successfully is a willingness to change and an openness of heart and mind.  You need wholeheartedly to commit yourself to those 10 minutes a day and ideally to finishing the eight week course. If you can do that then the changes just seem to flow by themselves and to happen almost effortlessly

I see no point in going into great detail about the process. Firstly because this will be different for everyone so your experience may be quite different to mine, and secondly because this is done so much better by Mark Williams, the author of the book 'Mindfulness: A practical guide to finding peace in a frantic world'.

I initially took up Mindfulness as I felt I needed some support over Christmas in order to get me through a particularly difficult and emotionally draining time.  To make matters worse a doctor had temporarily removed my antidepressants with disastrous results and at the very worst time of the year for me.   I found myself ricocheting almost uncontrollably between states of red hot anger and sad weeping. 

I had heard that meditation had the ability to raise the levels of serotonin in the brain, much as antidepressants do.  So originally I was looking for a replacement for missing antidepressants to get me through Christmas. I didn't realise what a life-changing thing I had stumbled across.  Mindfulness has already delivered this and much more besides and I am still only early on in the process (at week four of eight)

I have found that general benefits include: improved creativity and improved concentration and focus (less likely to be distracted), better time management and much better relationships. Oh and food tastes great!  As if I never tasted it before
MS-related benefits include less fatigue and better fatigue management, improved memory and improved sitting posture.

I have learned a lot about myself; what a control freak I am and how difficult this can be for a wheelchair user with MS who cannot control her physical environment very easily and how this can lead to very negative frustration.   I have found out what enormous benefit there is to be able to let go of control when I choose to. This is a crucial point about Mindfulness; it does not change your personality, merely allows you to be aware of the choices you are making and helps you to make better ones. 

I definitely intend to continue with the Mindfulness course and want to take these learnings forward into the new year.  If you are interested and decide to give it a go, then the good news is that you can join a class and learn in a Group at the Centre which has the advantage of giving you the support of a group of people who are experiencing similar issues to you. Teacher/facilitator  Sarah Jones will be running classes in the new year so keep an eye on Centre noticeboards or leave a message at Centre reception. If you have any questions Sarah would be delighted to talk to you shecan be reached on sarahjones.874@btinternet.com or call 07973 156331. There is no charge for members except the customary donation

Mindfulness has been proven to be of enormous benefit to people with long-term illnesses.  You may not be able to cure the MS but you can certainly change your attitude to life and improve the quality of it.  I would highly recommend giving Mindfulness a try.  After all you have absolutely nothing to lose and potentially everything to gain. 

January 2014/September 2015

Henrietta Whitsun-Jones

Tuesday, 14 July 2015

Blog Summer Break

The blog is on a summer break for July and August.   We hope to be back in September weather permitting. 

These are the hottest months of the year and therefore the most challenging for people with MS including myself.

July 2015

Thursday, 4 June 2015


In awarding me a grant, the MS Society has given me far more than pounds shillings and pence. I have been given a sense of support, a feeling that someone out there cares and some memories of time spent with my children that are truly priceless.

This is a heartfelt thank you to the MS Society. It is also the story of my award, and how it unfolded over an extended period of time.

In 2014 I applied for a short break grant, so that I could go on a short holiday with my kids. In the spring I received a phone call to say that my application had been successful. That phone call was probably the best and most uplifting news that I received all year.  I felt so happy and excited about the forthcoming trip. Since leaving my home to live in care on meagre disability benefits, I had never dreamt that I would have the means to go on holiday with them ever again. The MS Society proved me wrong.

Sadly, due to my failing health, it became apparent over the next 12 months, that I would be unable to attempt such a trip. Unfortunately, the holiday became a mountain too  large and daunting for me to climb. Reluctantly, I had to let it go. You can imagine the disappointment.

However, thanks to the MS Society all was not lost. Always helpful and flexible, the Society agreed to offer me my original award in order to support 3 smaller projects instead.  The first of these, was a series of days out with my beloved children during their Easter school holidays.  These were a huge success, more within my capabilities than a trip away and just as much fun. Days out varied from a simple shopping trip with lunchtime pizza, to a more ambitious Owl Flying Experience at a birds of prey centre or indoor skydiving followed by tacos for lunch. In a restaurant one day my 13 year old son turned to me and said, "You know, mum, we don't get to go out for lunch very often. But when we do, it's like Christmas!"  I felt just the same.

I have now received the second and third instalments of my grant.  However, I still have the projects themselves to look forward to.

The first is a garden project. Due to my MS, I am unable to tolerate direct sunlight for more than a few minutes. Creating a shady patio, will give me somewhere to sit in my wheelchair where I can be comfortable and cool, whilst still enjoying the outdoors.  The work is scheduled for the autumn, and will complete in the new year.

The final instalment of my award has created a travel fund, giving me the independence to get a wheelchair taxi where I want and when I want. I am already enjoying having much greater freedom.

Although losing my original short break was a great disappointment, with hindsight I can safely say that things have worked out better in the end. Thanks to the MS Society, the projects above will have improved the quality of life for myself and my children more than a single holiday could.  Furthermore, I have been able to extend the warm feeling of support from the Society over an extended period, since the grant was originally awarded in 2014.

The feeling that someone out there cares has meant more to me emotionally, than I can say. As I happen to have a very aggressive form of MS and sometimes feel that I am fighting a losing battle, this chink of light from the MS Society, has lit up some very dark times indeed.

Thank you from the bottom of my heart.

June  2015