The internet: help or hindrance to my MS?

I  remember 18 years ago the Internet was in its infancy.   I remember talking about it to my then boyfriend who was an early adopter and already tinkering with it.  I thought it was quite nasty and annoying and would not catch on.

To say that I was wrong would be quite an understatement!

18 years later and the world is unrecognizable. It has shrunk to a fraction of its former size, and people in Scotland can communicate with people in Dubai in nanoseconds.

The Internet has undoubtedly compensated for my MS limitations enormously. Thanks to Internet shopping I have been able to do my weekly grocery shop online for years and feed my growing family whilst being unable to get round a supermarket. Through my laptop I have had a window on the world and a connection to the rest of society that I would not otherwise have had. I have been prevented from becoming isolated.

I have purchased clothes, equipment, tickets, holidays ... you name it,  freely and easily. I have had access to information that otherwise I could only dream of. So the internet has undoubtedly been of incalculable benefit to people like myself with a disability.

If you sense a 'but' coming that's because there is one.  Because for each benefit there is also a corresponding drawback. Take communication for instance; for every budding love relationship forged over the Internet, there is a 'saddo' somewhere who cannot talk to real people face to face but can only communicate and make friendships from the relatively 'safe' distance of cyberspace.  This is an impersonal, electronic world that has no heart and no feelings and therefore does not care. It seems to reflect only the status quo and is therefore inherently conservative. Thus, in a man's world, pornography and images that denigrate women are everywhere. The very worst aspects of humanity are depicted online: images of people doing unspeakably awful things to others. The Internet will tell you how to go about murdering someone, how to build a terrorist bomb or where to find other people who enjoy looking at images of paedophilia. It is far less often a tool for good than an instrument for evil.  It is almost impossible to regulate and is anarchic by nature.

These things should not prevent us from using the Internet where it helps us, but it is as well to be aware of its pitfalls. We must remember that it is our slave and not the other way around. Nor should we make the mistake of imbuing it with a personality or a moral code for it is not human and has neither.

My advice is use it carefully and wisely and be realistic about its limitations.  I tell my kids the same thing!

That way you can enjoy the benefits whilst hopefully avoiding most of the pitfalls.  One thing is for sure though

  - you cannot avoid it!

Henrietta Whitsun-Jones

How does my garden grow?

 I dream of making a garden: the best fun I have had with my clothes on for ages. The nursing home where I live have granted me my own patch of garden that I am responsible for. I dream that the gardener here might be able to do the physical side of things on my behalf.  What a joy that would be!

Gardening is a tremendously life-affirming activity because it means dealing with living things i.e. plants   It probably signifies that I have been thinking about life and growth (of the personal kind).  Surely this must be a flowering of the tree of Mindfulness: a delicious rising of the sap of imagination?   An increase in activity here is definitely one of its

features that I have experienced   lately.

I have recently put considerable effort into making my little flat here just the way I want it.  I have tried to make a comfortable, appealing and homelike place where my children can come and be with me and where I feel that I can be myself. Now my creative energies need something else to focus on. And so they have turned towards the garden.

It has been the best fun to imagine what my little patch of garden could look like: how it could change from season to season, where plants should go depending on their mature height, colour and leaf form, checking that I have chosen contrasting and insect friendly varieties, and checking that the plant-types are reasonably drought tolerant in order to keep watering to a minimum.   Whatever comes to fruition, I'll try to upload some photos in the summertime.

I feel that this focus on gardening is both seasonal and representative of my Mindfulness journey. I have tried to continue my meditation practice twice a day where possible (I started the week before Christmas). I have experienced several highs and lows since then though I have found that Mindfulness has sustained me throughout.  So

far it has provided a rock to cling to in a storm, but somewhere to bask in the sunshine as well. With regard to the MS I know that I have large patches of dead brain. I have seen pictures of these on my last MRI scan. But the brain is a mysterious and magnificent piece of kit. It is capable of compensating for its own shortcomings.   I am hoping that Mindfulness is doing just that for me.  Of course it is not a cure for MS but I hope that Mindfulness is capable of helping my brain to work smarter despite the far reduced brain area available. I spoke about this to my very interested neurologist recently.

And the best part is I get to take it with me wherever I go because it's inside me at all times. It's just an eyelash blink away.  And it's completely free!

If you fancy giving Mindfulness a go workshops are available at the Centre. Just ask at reception.

April 2014

Spring has Sprung

Feels like it's finally here. That thing called Spring that we have waited for for so long.  And doesn't it feel good? Like anything, the having is all the sweeter for a long wait.

With the spring have come thoughts of the children that have sprung from me. Perhaps because they have been away on holiday during half term. I guess I think about them a lot. This is undoubtedly because I do not live with them but in a nursing home instead and unfortunately we are separated much of the time. This artificial distance gives me perhaps a perspective on them which I would not otherwise have.

The thing is I really like them. Of course I love them (more than life itself, actually) I mean that as well as love them I really LIKE them: the  people they are becoming

My daughter is a very pretty girl. And all the prettier because she does not act as if if she knows it. However she does not have outward looks alone She has an inner beauty that shines out of her. It is a beacon that I'm sure will attract many people during her lifetime.

She is also great company: a lovely person to be with. The kind of person that you just feel better after being with her.

Add to all this brains, humour, maturity, common sense and kindness and she really does have it all. Oh. and she has the singing voice of an angel too. She is still only 14 but already is one hell of a woman!

As for my son, what of him?  He is two years younger so has more growing and developing ahead of him than his sister. He also is a looker: a very handsome boy and becomingly modest, too.

I wonder that his little arms are not pulled out of their sockets with the sheer weight of his not inconsiderable gifts, which are as weighty as his sisters'.  He is fiendishly clever: capable across the board of being good at anything he puts his mind to. He is also wickedly funny: he can have me crying with laughter in seconds, thanks to his clowning around and ascerbic wit. Self-expression on paper seems to come very naturally to him also

But it is his sweetness and kindness to others that has the power truly to take my breath away. I have seen him tenderly lead an elderly man with dementia in the right direction. Or help a bewildered and ailing man upstairs with his bag, who has been unceremoniously dumped at the door of his home by an ambulance crew who should have known better. He does these things easily and naturally, almost without thinking.  Remarkable behaviour for a 12-year-old!

I can take very little of the credit for these outstanding young people. For I truly believe that in the main children emerge from the river of souls almost fully formed. As parents we do comparatively little to shape them. If I am a good parent it is because I am a good gardener. I have simply tried my best to provide good conditions for them to grow in:  good soil, enough water and plenty of light. They have done most of the growing and developing all by themselves

I seem to have had the good fortune to bring forth two top quality world citizens of tomorrow: for I am confident that the world will be a better place with my children in it. They will make their contributions sensibly, responsibly and intelligently. Exactly how they chose to do so will be revealed in due course.

And as they continue to grow up I will have the pleasure of witnessing it all unfolding.  So here's to their continuing journey and to the Spring that has just arrived!

With New Year in mind

So it's all over for another year.    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 difficulties 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 she can be reached on sarahjones.874@btinternet.com or call 07973 156331. Sarah will also be running classes via Skype for those who find meetings problematic.  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 

'Tis the season to be exhausted

Christmas is a challenging time for women everywhere and especially if you have MS.  Round about October time it can look like a particularly huge mountain to climb that is looming ahead.

Why is this?   Because largely for us mothers we are motivated by the fear of our children's faces before us wearing an expression of disappointment and representing our failure.  In this way failure to 'do Christmas' properly means that we have failed as a mother and a woman too.

This is especially true if you have a Scandinavian family background as I do.  For in Scandinavia Christmas is especially important, even more so than in the UK, if that is possible.  in terms of decorations, cuisine, presents and tradition Christmas reaches heady heights: the bar is set incredibly high.

It is therefore at this time of year, being a Woman with MS, that I have to be especially careful not to exhaust myself totally.  Fatigue management is especially important at this time of year   Otherwise festive fatigue (FF) can set in in a big way.  Severe FF can result in a ruined Christmas Day when you are too tired to enjoy it and left thinking 'why oh why did I overreach myself?'.

Consequently I have learned over the years several tricks to employ in order to avoid this.  Firstly it is essential to break down that looming mountain that is Christmas into smaller and more manageable hills. Writing lists really helps break big tasks down into smaller ones, so write as many lists as possible and work your way through them methodically.

Next, pace yourself.  This is an essential skill in the fatigue management armoury anyway but especially important in avoiding FF.  Never be tempted to go Christmas shopping and then attempt a seasonal drinks party in the evening as we'll: it is one or the other I'm afraid but not both. 

Also, start your Christmas shopping really early.  It is not a bad idea to become one of those really annoying people who takes up buying Christmas present bargains in the summer sales and hides them away somewhere:  just do not forget where the hiding place is (that has happened to me before now and is intensely annoying).  Be realistic and do not attempt to achieve more than one task per day

Use your diary to the max.  Use it to plan in essential tasks, for example 'December 1^st, put Christmas decorations up'.  This way you will not be surprised by things that jump on you from behind, like the Ghost of Christmas Soon.

From experience I have found that although this pre-Christmas planning sounds a bit like a military operation it is best not to over plan Christmas Day itself so that it withers and dies from lack of spontaneity.  Rather, let it unfold naturally as it wants to. That way you can sit back and enjoy it and trust that your efforts will pay dividends behind the scenes.

Never ever be tempted to host Christmas Day yourself.   Leave this up to the able bodieds who are mad enough to offer.  For several years I was forced to do this against my better judgment because I was living at home with young children around.  Each year it took me about a month to recover and each year I was left saying 'never again!'.  But each year it comes round again.   Christmas is one of those universal laws that you just cannot stop.  Resistance is pointless: it just makes you unhappy and earns you an unwelcome 'bah! humbug!' reputation. 

Hopefully by now you will be able to enjoy an FF free Christmas with your family around you feeling really smug when your friends complain of how exhausted and stressed they feel.  The ultimate goal here is to have a Christmas without stress because as everyone with MS knows stress is just about the worst thing for the condition.

Anyway I wish all Centre members a really enjoyable, FF free and stress free Christmas with plenty of family togetherness, for it is this that is really important at this time of year.  Happy Christmas to one and all!

December 2013

Do Carers Really Care ?

This somewhat depends on who your carer is.  For it might be a spouse or another close relative.  In this sense then of course the answer is yes, they care because they love you.  Except they didn't choose this role any more than you chose to have MS.  In that sense the relationship becomes complicated: there is perhaps a little guilt on your part, that if it was not for you they would not have to live a life of endless [cancel selection often exhausting] service, and a little suppressed resentment on their part for the same reason.  If this does not apply to you then I take my hat off to you and shout ‘hooray’ for you are the exception to the rule.

Many partners are never honest enough with each other to risk admitting this.  I know that it's a complication that certainly destroyed my own marriage eventually [but that's a whole other blog].  I took the decision that I wanted my children to have a childhood rather than become my carers, and so for years they were not involved in my care.  I like to think that they therefore had a relatively normal childhood.  Except this put extra pressure on my husband, which then took its toll.  [There ain't no such thing as a free lunch].

Then there are the kind of carers who are employees, but even here there can be complications.  The ground between employee and friend can become somewhat grey, for example, when is a favour a favour and when is it just taking the Mickey and going one step too far?  This can raise constant questions.  Personally I have had a couple of highly successful relationships with employed carers in the community [these people are still friends] and some not so successful.  We place these people in a position of ultimate trust; we trust them with our possessions,     our homes, our families and of course our persons.  It can be tremendously painful   if that trust is broken: I once suffered a significant theft and was forced to involve the police.  I never did find out who the culprit was, but certainly relations with carers were never quite the same and eventually soured altogether.

And then there are the type of carers who are employed by institutions such as the nursing home where I live.  These, I have discovered, are a totally different breed.  Yes they care enough to do a difficult and demanding job for just the minimum wage; they have to buy their own uniforms and their own meals, do not get sick pay and the bare minimum maternity leave, are put on probation after too much sick leave [the list goes on].  And yet they love their jobs.  The vast majority of them are thoroughly lovely people but there is a minority whose motives are not so snowy white.  They seem to love how their role puts them in a position of authority over another [weaker] person, just a little bit too much.  I feel a little uncomfortable around such people and tend to become very aware of my own vulnerability.  Yes we have all heard the horror stories about what goes on in some care homes; I guess it is this type of person to whom that kind of behaviour becomes attractive.  If any one should ever find themselves in a vulnerable position in this kind of scenario then you need to contact the police or visit WWW.witnessconfident.org to communicate with the police in confidence.  And of course inform your social worker.

  

Everything seems to be the wrong way round.  It is as if these occupations are still being treated as ‘women’s jobs’ as they were at their inception and therefore lowly and menial.  It’s high time things caught up now that we are in 2014.  Society always seems to place the most important jobs such as teaching, caring for children and caring for the sick and disabled at the bottom of the heap.  So is it perhaps society that does not care? 

November 2013

BEING MOVED AND TOUCHED

I have been moved and touched more often in the last 10 years of my life than ever before. For this is how long I have had MS.  [For the past 6 years I have been a wheelchair user and handled by carers for washing, dressing etc]  There is a semantic difference here but actually it is one and the same thing i.e. to be moved and touched physically and emotionally. The English language is very revealing as we use the same words for both 

Touch can of course be very therapeutic in the hands of certain people :a good masseur, a healer who may undertake a laying on of hands, a reflexologist or a physiotherapist (both of these excellent therapies are of course available at the MS Centre from highly trained people)  Carers would do well to remember the eloquence of touch which can carry a myriad of words and feelings with it .  After all a simple touch can mean  'I love you' or ‘goodbye’ or ‘I want to help you'.  This ‘language of touch’ is unlikely to be adequately covered in any moving and handling training but it is important for them to be aware of nevertheless.

In this way when carers handle me in the nursing home where I live, I get a whole bunch of messages from them of which they are perhaps unaware.  These vary from 'I got up late for work this morning and I have been in a rush ever since' to 'I am dog tired and would rather be anywhere else but here right now'.  Depending on how a carer handles you, simply getting dressed for the day can make you feel like a useless and inert sack of potatoes, or a vibrant and useful person who is ready to face another day.  The quality of the touch is all important.  The intention behind it is key.  Carers do not intend to cause any distress, but in a nursing home they are often forced by the busyness of their jobs to be more rushed than they would perhaps like.  Regrettably it is not possible to get 23 people up and dressed during a morning, and handle them all in such a way that they feel fantastic about themselves.  These negative interactions, however, have the power to make me feel quite low at times.

Personally speaking my favourite kind of touch comes from the physiotherapists at the Centre.  This is because it is respectful, professional, caring, compassionate, gentle and all this with a practical purpose in mind.   I wish all my carers had this kind of approach to their touch while handling people but sadly it is not the case.  I also wish that it was not necessary for those carers to wear plastic gloves all the time.  Of course I appreciate the practical reasons for this Ie infection control, and that it is done to protect me,  But I do wish I was able to experience the comfort of human touch without the barrier of silicone in between.

Because it can be a very comforting thing: the touch of one human being to another.  Such a simple thing and not much to ask for, you would think.  But how wrong you would be: we seem to avoid the need to touch one another at any cost. Perhaps this is to do with deep subconscious worries; fear of invading someone’s personal space, fear of being accused of inappropriate sexual behaviour.  Or maybe it is purely a very British thing; our Mediterranean cousins do not seem to share these Inhibitions.  People in Italy Spain France and Greece 3ouch each other far more freely than we do.  Frequently when I am at the theatre or cinema people will not sit directly next to me.  I am convinced that this is a subconscious fear that they might catch whatever I have. I am sometimes tempted to shout at the top of my voice when I enter a room full of strangers in my wheelchair, 'Don't worry it's not catching!'

In short I wish we lived in a world where disabled people (who are sometimes quite lonely) would be positively touched by human hand much more often. This would feel very 'healing' and comforting I think. I believe we do not touch one another enough (I am not talking about sexual contact here).  And I believe that the power of human touch can be very powerful. Sadly many of the therapies which offer this eg massage, reflexology and physiotherapy can be quite expensive but those of us with MS can luckily experience most of these free of charge at our wonderful Centre. If you have not tried them yet then why not give it a go? After all, you have absolutely nothing to lose and potentially a lot to gain.

October 2013