'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

MS doesn't have to mean Mega Size

I was massively overweight. But I was also in despair: being a wheelchair user I thought I could never lose it. Being big was just part of my new, and rather miserable, existence with MS. Exercise was impossible and comfort eating was one of the only ways I had of making life any better. How wrong I was! A year later and I am nearly 5 stone lighter: with improved mobility, easier manual handling for my carers and an improved self image. So how did I do it?

Here's how ... I put my thinking cap on and realised a simple equation: I was burning hardly any calories due to my limited mobility. One needs around 850 cal a day to maintain life's bodily functions, therefore I needed to consume only around 1000 cal a day. No more. So I needed to drastically reduce my calorie intake. Not rocket science! I started by giving up alcohol (unfortunately very calorific) followed by other calorific foods such as dairy products (cheese, cream, butter plus all chocolate, biscuits and sweeties) and replaced all sugar with a marvellous product called Splenda (it has all the look, feel and taste of real sugar but not the calories). Butter was replaced with Flora. Bread was replaced with Ryvita or rice cakes. My main meal was lunch. Supper was a light snack of soup with Ryvita and cottage cheese. I discovered Weight Watchers desserts (helps you get that much needed chocolate fix) or chocolate soya desserts made by Alpro (dairy free and therefore very low-calorie). I became an avid reader of labels.

Calories are usually described as ‘kcals’: anything over 120 kcals was out. I had a monthly weigh--in the Centre which quickly told me that I was doing the right thing and kept my spirits up. Yes, it was a punishing regime and took a lot of self-discipline which I didn’t know I had, but was so worth it. Someone asked me recently why I did it. I replied that if I was really honest, it was largely down to vanity. The other person looked crestfallen and only perked up when I mentioned the other, more medical, benefits. Thinking about it I wondered, ‘Are disabled people not allowed a little vanity occasionally?

Surely we are entitled to this, the same as anyone else and it can be a positive thing?’ I was reminded of visiting a disabled toilet on more than one occasion where there was no mirror above the sink. Are disabled people not allowed to be interested enough in their appearance to warrant this? I believe this is something worth hanging on to. After all if you don’t care what you look like, it sends a clear message that you have given up on yourself. Any woman knows the value of a comb through their hair and a bit of lipstick before going out: a simple thing like this can make you feel like a million dollars. A good shave and a dab of aftershave can have the same effect on a guy. Taking pride in your appearance can give a much-needed boost to one's self-esteem and self-confidence. Those of us with either limited mobility or in a wheelchair need this more than most. If you can't manage things for yourself (as I can't) carers are usually more than happy to help. Just make sure you don't end up looking like something off X-Factor!

August 2013

Has MS made me a better mother?

Am I a bad mother?   Have my children really suffered because of my MS?  At times I have felt enormously guilty about the possible negative effects of my MS on my mothering.  For example, I have never been able to climb the stairs and tuck my children into bed and read them a bedtime story.  Many times I have been a spectator only in my wheelchair while my husband cavorts on the beach with the kids or plays football with them in the park.

Recently I was asked by the local education authority to complete a form outlining my daughter’s family background and explaining why she deserved a chance at a grammar school education.  I was reluctant to suggest that she was somehow at a disadvantage due to having a disabled mother, and so I chose to list the benefits instead.  Actually this was a very positive exercise for me.

I was quite surprised to find that there were unexpected benefits.  Both kids respect other people’s differences which don’t seem to phase them at all, whether this be physical or mental disability, religion, sexual orientation or nationality.  They empathise with others easily, something which much older people seem to find difficult.  To name just one example, I have always been enormously proud of the way that they stick up for other kids at school who are just ‘a bit different’.  They don’t appear to follow the pack [children can be so cruel] but to make up their own minds instead.

They are extremely helpful and quick to assist others because they are so used to helping me with practical tasks.  I don’t know many 11 year olds who will make someone a cup of tea without being asked, but my son will.

Leaving them and my home when I had to go and live in a nursing home almost broke my heart however I have since been compelled to find the advantages.  I have more time, in between visits, to think carefully about my words before I speak to them.  Consequently I manage to avoid making the knee jerk comments that unfortunately many mothers do, that can be so damaging.  I do not have to nag them about tidying their bedrooms or wearing a coat outdoors.  It does not concern me how long they spend talking on the phone to their friends or how long they spend in the bathroom.  Instead I can be a friend and confidante during the precious quality time that we spend together.  I can enjoy their teenage years, watching them blossom into adults and accompanying them on this exciting journey, instead of being challenged and threatened as unfortunately many parents are.

In this way the negatives have been transformed into positives.  And so I am that kind of mother: one who loves her children more than life itself.  MS or no MS, the same as any other mother.

August 2013

Dan the Music Man

Dan the Music Man

By Henny Whitsun-Jones [formerly Goillon]

Welcome to Henny’s new blog.  I hope you will want to read my words regularly.  I will always try to entertain you and give you some food for thought at the same time.  There will be a different theme each time.   I like to write about what life is like for me as a wheelchair user with MS.  Not everything that I have to say makes comfortable reading for everybody, but that’s just too bad.

Recently an ’entertainer’ came to the nursing home where I live.  His name was Dan the Music Man.  Tall and thin and about 65 with balding head and glasses he wore a jaunty Hawaiian shirt, and intended to fill the next 1 ½ hours singing Frank Sinatra standards, thanks to his booming backing track.  As he crooned reedily into his microphone and attempted to jig about, I felt he had about as much stage presence as a piece of pipe lagging.  ’Now I know what retired postmen do with their spare time’, I thought.

But then I looked around me.  Did it really matter what I thought of the quality of the ’entertainment’?  The room was packed with wheelchairs containing some of the very ill people that I live with.  Many could not speak or control their limbs at all and yet they were very excited.  The sound of squeaks and cries of pleasure floated over the thump-thump of the music: arms and legs went everywhere.  Everyone was clearly having a great time and the good atmosphere was infectious so that I started to enjoy myself.

Only one young  man in a wheelchair sat motionless and unresponsive as usual.  Terry sits silently in the same spot every day, being fed by a machine through a tube in his stomach.  He cannot speak.  He responds if you call his name though his eyes roll wildly in his head, so no one knows how much he can understand.’ What is he really thinking?’, I asked myself for the umpteenth time.  There are many inscrutable beings in the world around us, many of them with MS, who do not speak or speak very much.  Without communication life becomes very very difficult.

My own speech has deteriorated a lot over the years.  I notice often nowadays that if something seems too difficult to say then I do not bother at all [sometimes too complicated or perhaps too long, or maybe too much background noise to compete with].  On the upside it certainly makes you choose words carefully and think before you speak, something I needed to improve on anyway.  One does not waste words because they become precious.

The speech therapist I was referred to through the MS centre was very helpful: she gave me loads of hints and tips to make communication easier, also exercises which I do to this day, especially before an important phone call or conversation.  Losing the ability to communicate altogether is something I dread but take heart, for it is possible to improve on what MS takes away.  With a positive attitude you can fight back.

July 2013

Being Me

 BEING ME

THE last three months have been the worst of my life.   Full of misery, depression, loss, loneliness, self doubt, frustration and desperation.  And no, I have not been forced to watch endless episodes of ‘Hollyoaks’.  I have found myself torn from my family and home very suddenly and trying to live in a nursing home.  The shock to the system would have been immense anywhere for I am now a mother who does not live with her children, a wife with no husband, a homemaker with no home, a gardener with no garden, a cook with no kitchen.

But to add insult to injury the nursing home in question combines people with  neurological conditions with people with challenging behaviour or mental health issues.  So I am living with people who cannot hold a conversation: I go to sleep to the sound of people screaming and swearing and wake up to more of the same.  What is the reason for this strange combination of people?  For surely the two don’t always go together; I like to think not in my case anyway!  No one seems to know the answer; it seems to be purely historical.  So where does someone like myself go to live?  The other alternative seems to be elderly care homes but I’m not really elderly either, being only 51.  The MS Society no longer has its own care homes.  So I am forced to rely on the present ‘specialist’ nursing home.  If I was not a raving looney when I arrived here, then I may be when I leave!

But one thing has made the difference: the Chilterns MS Centre.  My weekly visits have not only stabilised my MS but kept my mental health intact.  The sheer warmth coming from the army of volunteers, both front of house and in the cafe, has made me feel so welcome and understood: it is the only place where I have felt that I can be me.  At the centre I feel accepted and valued: my MS shapes me and my life, but it does not define me as a person  I have also received a lot of personal encouragement and validation which has meant the world to me and meant that I kept believing in myself.  The advice and practical know how has also been invaluable.  The art exhibition was a highlight and something I could share with my family.  The kids thoroughly enjoyed it.

I do not believe this is something that would have been possible in the old building.  The centre is now somewhere where I am proud to bring family and friends to visit.  It feels like MS has come out of the closet.  If we have come this far in just six months then who knows where we will be in six months’ time?  The sky really is the limit for us!

March 2013