MY MINDFULNESS JOURNEY CONTINUES

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

HOW I FIRST DISCOVERED MINDFULNESS

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

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

'THANK YOU', MS SOCIETY

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

IT'S GOOD TO TALK

For me, life has always been about communication with other people. Usually verbal. It has always been 'my thing'. Whether I was an actor, or a communications' consultant, or just me. 

Unfortunately, speech is an area that suffers for many people with MS.  As I happen to have the most aggressive kind of the disease, lately the struggle has become more intense as my speech fades.

However, help exists!  The marvellous physios at the Chilterns MS Centre have come to the rescue once again. Thanks to them I am currently 3 weeks into a 6 week trial of the marvellous Cough Assist machine which has been working wonders.  (See earlier blog post HENNY CALLING). I have been using the machine three times a day.

The feedback from carers, nurses, Physios, friends, family: everyone who comes into contact with me, has been overwhelmingly positive. They all comment that my speech is much louder and clearer than before. My self confidence is riding high. Furthermore this experience has really taught me just how vital verbal communication skills can be.

When I have a voice relationships with other people are much easier. I can tell jokes, so exchanges become infused with laughter. I can express my sense of humour.

When I have a voice I can explain to carers or whoever, exactly what I need or want: there is no telepathy required.

When I have a voice I can use humour and tact to assert myself: I can protect my rights with diplomacy. I can express views, political opinions and thoughts.

When I have a voice I can express myself using voice recognition (now quite sophisticated). I can no longer type with my fingers so I can write this blog, or emails. Or make phone calls. Yes, I can even Tweet!

Suddenly I am social and connected: I can participate and get involved. (I even managed to help deliver a media training session recently at the Centre - addressing a group and talking through a presentation. Fancy that!)

When I have a voice I notice that my personality is different. I am much more outgoing, and less likely to feel 'locked in' or isolated.  I can take the initiative and be active, not passive.

So why does this magic machine work?  (Here is my very non-scientific explanation, based on my personal experience). As a former actor who sang a lot, I am aware that voice production relies on getting a good air flow over the voice box: the breath is vital. Unfortunately MS has compromised my lung function: the Cough Assist machine seems to help counteract this. I can get more air into my lungs and so my speech has more power.

I have been enjoying this part of the trial so much, and having my speech back. The next step is to do without the Cough Assist machine entirely for a fortnight, in order to measure the extent to which I can maintain the benefits. So watch this space ..

But whatever the trial result, I can feed back with certainty that the Cough Assist machine really seems to improve speech for me. Here's hoping that this is a story that I can continue to tell ...


(For more information about the nippy Clearway Cough Assist consult your physiotherapist or visit www.nippyventilator.com)

May 2015

FULL HOUSE!

Sometimes everything just clicks, and falls into place.  Like now.

Almost like the air shimmering when a ghost has just walked by. Something has changed.  What?  A barely audible 'thunk', while the clock hands reach twelve or a key turns in a lock. Or perhaps you feel the earth rumble briefly under your feet: one tiny degree in the earth's orbit.  Or was it just a 'tube' train on the London  Underground going past?

What has happened?  I have been through a long winter of waiting, waiting, waiting.   (Patience is not something that comes easily to me). So it has been icy cold and hard, hard, hard.

But now that there is blossom outside my window again, everything has started to bloom all at once: several different projects have come together simultaneously.

I have decided to blog about these separately. So, if you are interested to find out more, then read on...

This week's project has been in the diary for a long time: Media Training with a group of the Leadership Team at the Centre: Occupational Therapy and Business Development were represented, along with our CEO, Robert Breakwell. (Session 2 will train a different group in 2 weeks' time). The aim of the training was to help make the team more effective in representing the Centre to the media and the press (something they are increasingly getting an opportunity to do these days).

This is mainly thanks to the tremendous job that is being done by my co-trainer, Catherine Golds.

Catherine is a Centre Trustee, volunteer PR manager, general good-egg and fellow customer of M&S (my beloved sister - yes you guessed it, she also has the condition – and I, have jokily referred to MS as Marks and Spencer's, for years).

The session went extremely well, as feedback confirmed. I really enjoyed working with Catherine: I think we made a good duo. And as you would expect, the Leadership Team came across fabulously well: passionate, professional, warm and real.  A precious and rare concoction that the media will feast on.

Me, I was a little apprehensive beforehand. After all, it is about 8 years since I last media trained anyone. (For me, M&S has changed and developed a great deal in that time). In my darker moments, I feel a bit 'broken': a busted-up thing, forgotten and gathering dust in a corner somewhere.

But I needn't have worried because I was amongst friends. People who can see through the M&S to the person underneath; allowing them to do their best and still make a contribution. I felt useful. And it made me feel really happy.  Happy to be able to be of service to the Centre that over the years has given me so much.

That day, my huge debt of gratitude became just a tiny bit smaller.  Thank you yet again, Centre, for giving me that opportunity.

  

May 2015

Happy Anniversary!

2015 will be a big year for a anniversaries. 

The wonderful annual art exhibition is almost upon us, and this year it celebrates its glorious 10 year anniversary.  From humble beginnings it has grown and developed from year to year and has now blossomed into the wonderful celebration of creativity that it is. 

As well as much needed funds it generates an enormous amount of goodwill towards the Centre. Each year I look forward to attending with family and friends, glowing with pride. 

I realised, with somewhat of a shock, that 2015 also marks my 10th anniversary of membership of the Centre. It would be hard to be put into words just what the Centre has meant to me over that period of my membership. But I am going to try. To summarise the Centre is somewhere I feel both warmly welcomed and accepted for who I am, that is, Henny who has MS.  

Here, it's okay to be me. 

2015 also sees the Centre's 30 year anniversary, truly a cause for celebration and a good reason to bring out the bunting.  What on earth did local people with MS do before that?  It hardly bears thinking about.  You will have noticed the special 30th anniversary logo that is about.  Look out for other opportunities to celebrate later on this year. 

So I may not be any wiser but I am certainly another year older. I suppose I will have to settle for that. 

  

February 2015