Friday, 18 July 2014

HAPPY BIRTHDAY BENEDICT

Happy Birthday to Benedict CUMBERBATCH; the utterly splendid Benedict Timothy Carlton CUMBERBATCH, who is 38 years old today.


Most of you already know this, are aware of the fact that I'm rather taken with Benedict CUMBERBATCH.  You see he is an actor, and he has played the role of Sherlock Holmes (See my previous BLOG Post on SHERLOCK HOLMES).  I have loved Sherlock Holmes, from the moment I purchased my first Canon.  I just fell in Love.



You are not supposed to love Sherlock HOLMES.  Sherlock HOLMES isn't loveable. He is damaged.  "It was not that he felt any emotion akin to love... All emotions, and that one particularly, were abhorrent to his cold, precise but admirably balanced mind." (SCAN), but yet somehow, there is something about his 'alone' that is quite upsetting, heart breaking, and I wanted to alleviate his pain.  He doesn't want to need anyone. He doesn't trust, and he doesn't need, and he doesn't love - or perhaps he fears trusting and fears needing and fears loving someone, in case that trust is broken and that need is violated or abused, and the love not returned.  To my mind, Benedict manages to make Sherlock human, yet is aware of those nuances of the character, those fine distinctions, those idiosyncrasies which make Holmes Holmes, which make him bonkers and brilliant, and damaged and a loner and "a brain without a heart" (GREE).



He (Benedict) has played the role of Professor Stephen HAWKING (See my previous BLOG Post on HAWKING).  I remember the first time I saw the 2004 film I didn't even know who Benedict CUMBERBATCH was, I just remember being very impressed at the time with the acting, with the sensitivity towards the role, with the way that the determination and dignity with which Professor HAWKING accomplished what he did, completing his PhD, whilst bravely facing the unknown in terms of his health and medical condition was captured.  In the 2013 film about Professor HAWKING, Benedict is interviewed and he talks very articulately about Motor Neurone Disease (MND), which really is the most terribly cruel neurological condition.  He expressed perfectly the "feelings of vulnerability" and the "terrifying prospect" of "a body that locks you in".  This is something I can relate to living with MS, which is a very different, but an equally cruel neurological condition.



He has played Major Jamie Stewart in the film of War Horse (See my previous BLOG Post on WAR HORSE).  I admit I haven't seen the film (I did go and see the National Theatre Live production of War Horse) as I am still traumatised from reading 'Black Beauty' as a child, but I am sure Benedict is splendid in it, and he learnt to ride a horse to play the part.



He has played Christopher TIETJENS in Tom STOPPARD's adaptation of Ford MADDOX FORD's 'Parade's End'. A powerful story set in the dying days of the Edwardian English Empire, covering a ten-year span before, during and after the First World War.  The glorious story of Christopher TIETJENS, a brilliant government statistician from a wealthy Yorkshire landowning family, "a man born out of his time but ultimately a hero" his wife, Silva TIETJENS, his "damaged, bored, dangerously privileged wife", and Valentine WANNOP, a young pacifist suffragette. "Valentine, an extraordinary young kindred spirit and intellect who provokes him into ‘gathering his thoughts’ and who fells him like a lightning bolt with her boyish beauty and pluck."  This is utterly perfect.  And I admit I fell a little bit in love with both Christopher and Valentine.



Recently Benedict has, arguably become somewhat ubiquitous: Star Trek Into Darkness; Twelve Years a Slave; The Hobbit: The Desolation of Smaug; August: Osange County; and he seems to 'pop up' in various places (i.e. at The Oscars, with a pretty spectacular photo bomb of U2) and be on various Chat Shows (on Jimmy Kimmel Live readingR. Kelly's "Genius"http://www.youtube.com/watch?v=sNPp74zh8lM) and Adverts (for Jaguar 'Alive'http://www.youtube.com/watch?v=x5kCfXIPcfw), and be the subject of numerous articles and interviews and he was even at Chelsea Flower Show this year with Wanda VENTHAM (his Mum); and in Singapore for the F1 Racing and also in Monaco for the Monaco Grand Prix and Paris for the Tennis.  Basically, it is fair to say, he gets about a bit.



Cumberbatchweb (http://www.benedictcumberbatch.co.uk/is a fantastic website for all things Benedict) and it is raising funds for The Princes Trust in honour of Benedict's 38th birthday. So if you want to do something for Benedict's Birthday you can donate at:
http://www.justgiving.com/CumberbatchwebPT or you can donate by text by sending the code BCPT73 and the amount you want to donate (£1 £2, £3, £4, £5 or £10) to70070



So, Happy 38th Birthday Benedict CUMBERBATCH.  You are splendid. Wherever you are and whatever you do, celebrate in style and have a wonderful day.  I am sure that you will.

Friday, 11 July 2014

KISSING

Pucker Up! 


The other Sunday was International Kissing Day.  And this kind of got me thinking.  Thinking about kissing.  Every girl growing up remembers the story of the frog that was turned into a Handsome Prince through the power of a kiss.



A kiss is a glorious thing.  A truly glorious thing. A kiss is the act of pressing one's lips against the lips (or other body parts) of another.  And to be enjoyed it should be shared.  As Bernard MELTZER explained, "Happiness is like a kiss.  You must share it to enjoy it."



So, as the song goes, in the dulcet tones of Dooley WILSON in the 1942 film, Casablanca: "You must remember this, a kiss is just a kiss." ... but really, is it?  Is a kiss ever just a kiss?



There are many types of kisses. A formal kiss.  A friendly kiss.  A passionate kiss.  A goodbye kiss.  And of course, a first kiss.  



And we have all experienced that 'first kiss' that all important first kiss, that nerve wracking, knee trembling anticipation of 'the first kiss'.  But why? What's so important about the first kiss?  Is it the fact that it is the first kiss which has the power to either 'rock your world' or 'shatter your dreams'?  Maybe it is as Cher informed us in the 'Shoop Shoop Song', "If you wanna know if he loves you so, it's in his kiss."  And then there was poor George Michael, who "Must Have Been Kissing A Fool".



The idea behind the International Kissing Day is that many people may have forgotten the simple pleasure associated with kissing, the pleasure of kissing for kissing's sake; as opposed to kissing as a mere 'social formality' or as a prelude to other activities. International Kissing Day is a day, a whole day, to remind us that kissing can be an enjoyable experience in and of itself. It is an expression of and experience of intimacy, of affection and essentially of love.



Audrey HEPBURN certainly was an advocate of kissing.  She is quoted as saying, "I believe in kissing, kissing a lot."  So do I Audrey.  And Ingrid BERGMAN commented that "A kiss is a lovely trick designed by nature to stop speech when words become superfluous."  Even Albert EINSEIN had an opinion on the topic, commenting that "Any man who can drive safely while kissing a pretty girl is simply not giving the kiss the attention it deserves."  Quite right Albert.



The record for the longest kiss now stands at 58 hours, 35 minutes and 58 seconds.  Blimey! That really is quite some kiss.



Percy Bysshe Shelly summed it all up pretty well in his poem, 'LOVE'S PHILOSOPHY':


The Fountains mingle with the river
And the rivers with the ocean,
The winds of heaven mix for ever
With a sweet emotion;
Nothing in the world is single,
All things by a law devine
In one another's being mingle -
Why not I with thine?

See the mountains kiss high heaven
And the waves clasp one another;
No sister-flower would be forgiven
If it disdain'd its brother:
And the sunlight clasps the earth,
And the moonbeams kiss the sea -
What are all these kissings worth,
If thou kiss not me? 

Indeed, what are these kissings worth, if thou kiss not me?



Personally, I think I am a little like Scarlett O'Hara (equally as complex,willful and bright *cough*) and just as Rhett says of Scarlett, I think I "should be kissed and often, and by someone who knows how."  Yes, I probably should.



So. Gentlemen.  If you know-how. Form an orderly queue!

Friday, 4 July 2014

RIDE LONDON2

As you will by now know (see my previous RIDE LONDON BLOG) Patrick aka 'SHARKY' is taking part in Ride London in support of MS-UK; to raise funds for and raise awareness of Multiple Sclerosis.  'Cos that is the splendid sort of guy he is.


In case you missed it.  The inaugural Prudential Ride London-Surrey 100 took place in 2013.  The event starts in the Queen Elizabeth Olympic Park, and goes on for 100 miles through the closed streets of London and out on into the Surrey hills.  The event is alegacy of the 2012 Olympic Games and is now an annual two-day festival of cycling, developed by Boris JOHNSON, the Mayor of London and his agencies. It is billed as the 'ultimate cycling challenge'; so, definitely not for the faint hearted.  If you would like to find out more, details can be found on the website: http://www.ms-uk.org/RideLondon-Surrey100




This year 'Bike London' takes place over the weekend of Saturday 09 August and Sunday 10 August, 2014 Amanda and I will be going along to make lots of noise and cheer Patrick and the MS-UK team along, and to meet with the other members and supporters of the MS-UK team.  If you are in or around London or Surrey that weekend, do get in touch and I'll let you know and I'll let you know where we shall be.  You can come along and meet up with us.  It would be really great to see you.  The more the merrier.




Patrick aka SHARKY is a tri-athlete: Running.  Swimming.  Cycling.  An Iron-Man.  He does this sort of thing for fun! He is SUPER fit.  He looks good in LYCRA!  Yes, he really is that fit.  So, he is ready for the challenge.  Patrick enjoys a challenge (well yes, we know that, because he married Amanda!).   He has been training hard. He has been training really hard. And it is going to get harder.




Patrick has commented that he is taking part because "I made him do it".  This is only partially true.  I am Amanda's friend, and I have MS and, I admit, I suggested it.  But, it seemed like a legitimate way to get Patrick into Lycra! Have a mentioned that Patrick looks good in Lycra?  So, why is he doing this?  Patrick has explained that, "MS-UK is important to me.  I have seen the terrible effects of this debilitating disease and I want to do my part to help find new treatments and eventually a cure."


Patrick trains between four to five days a week, dependant on his work commitments.  He explains that at the moment he does about 6-8 hours a week.  This is his 'base' phase of training.  His training is built into 3 phases of 'base', 'build' and 'peak'.  He will build up to 14 hours as his training builds.



To me, the commitment that Patrick shows is incredible.  His determination and dedication is admirable.  It is impressive.  It is awesome.  To be honest, it is really humbling to think that someone would show such devotion to the cause, to train with such loyalty, focus and commitment, would push themselves to such an extent that they can compete against some of the best.



When I asked Patrick about his diet, he explained that while he is training his diet is fairly straight forward:
Breakfast - porridge with banana, honey and sprinkled with a home-made nut-and-seed-mix.
Mid morning snack - fruit or nuts
Lunch - pasta salad with chicken or egg
Afternoon snack - small flapjack
Evening meal - fish/chicken/steak with vegetable or salad.


Patrick roughly bases his diet on about 2400 calories per day, but will increase this on heavy training days.  When he is training he will burn 500 - 1000 calories in an hour depending on whether he is running or swimming or cycling.  He tries to work on a 500 calorie deficit each day, so he loses 1lb per week, which means he'll get to his ideal race weight.



Patrick is rather strict when he is training, and he recognises that Amanda is a huge help in supporting him and keeping him focussed.  However she does provide the additional incentive and occasional treat of chocolate and wine when it is needed.


Patrick has explained that he "loves the challenge of driving myself to the edge, and even better especially when I can do it for a great cause.   The reason I choose to help MSUK is I know how tired I can get from working a 50+ hour job and training on top but I know a good sleep and all is ok, but I know my wife's friend doesn't get that relief."


Please. Please. Please, if you can, do support Patrick is his fundraising efforts.


Patrick is raising funds for MS-UK and has set up a 'Just Giving' Sponsorship page at:http://www.justgiving.com/Patrick-Bowden2 


The text code to donate by text is PBRL77 £5 then text that to 70070




THANK YOU in advance for you support and your generosity

Friday, 27 June 2014

RADAR KEY

World Continence Week will always be held from Monday to Sunday in the last week of June.  Therefore World Continence Week this year will be heldon Monday 23rd - 29th June, 2014.


World Continence Week (WCW) is an annual initiative managed and run by the International Continence Society (ICS).  Its primary aim is to raise awareness of incontinence, and incontinence related issues.

The other week I received another invitation to attend the 'Continence Clinic' at Leicester General Hospital (LGH).  I have blogged about this before (see Continence BLOG) about my last visit.  I commented previously that "I always refer to it as the 'incontinence clinic' - but my GP always corrects me, as the correct and more positive terminology (we have to at least try to be positive about these things) is the 'Continence Clinic'."  I wasn't thrilled the first time that I went, and this time I had a better idea of what to expect; a better idea about the prospect of being prodded and poked in places you don't necessarily want to be prodded and poked, but they had kindly invited me, and so I went along.



The Doctor and Janet the Nurse were lovely, they are lovely.  Really lovely. Because actually; it is all terribly embarrassing.  Because actually; nobody want to talk in detail about their bodily functions.  Because actually; nobody wants to discuss either their bowels or their bladder.  A friend, a comrade with MS commented that, "Incontinence is perhaps one of the most humiliating MS symptoms".  But the staff at the Continence Clinic understand this, are sympathetic and understanding and helpful.  They also retain a sense of humour, which really is invaluable.

Later on that evening I received a message from a friend asking me if I'd had a good day.  I replied explaining where I'd spent my afternoon, and this eventually led to a discussion about a 'Radar Key'.



I was asked if I had a 'Radar Key'.  I hadn't.  I admit I'd never even heard of one.

What is it?  What is a Radar Key?



It sounds quite exciting, it sounds like it could be a Doctor Who Gadget like a Sonic Screwdriver.  It really isn't that exciting.  But, I found out that it is a large, silver-coloured key.  This large, silver-coloured key opens disabled toilets.  Of which there are more than 9,000 accessible toilets in the UK, and these can be opened like magic with a Radar Key.  (I rather suspect that a Sonic Screwdriver may be effective too, in opening disabled toilets if I had one of those).



This is the Radar National Key Scheme. The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, caf├ęs, department stores, bus and train stations and many other locations in most parts of the country, therefore offering independent access to these toilets by using a special key which can be bought from the Disability Rights UK.The first Radar toilet opened in 1981. Since then, more than 400 local authorities and thousands of businesses have joined the scheme. Some 9,000 toilets are now listed as being accessible via the Radar key but the figure is probably much higher.


Official Radar keys cost about £5, including postage and packing. These can be bought from participating local authorities or the Disability Rights UK shop.  Although some councils give them away for free.  And there are lots of imitations and copies available on the internet.

It is called the RADAR scheme because Disability Rights UK was previously called theRoyal Association for DisAbility Rights.  The thinking behind the radar national key scheme was that People who need to use a locked disabled loo can now go in peace, and quickly, without the indignity of asking someone if they can 'go', please and they shouldn't have to wait and should access a clean facility.



The truth is a lot of people with MS do have issues at some time with either their bowel or their bladder.  It is estimated that it affects around 50%-80% of people with MS.  For them it can either be a rush to get to a WC, or they can't go at all.  All of which is an inconvenience.  And requires a convenience.  Bladder and bowel problems occur commonly in MS, and can range from mild incontinence or constipation to more severe problems. Bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times.  Bowel problems include constipation and, infrequently, loss of bowel control.



So faced with these difficulties it may be useful to have a Radar Key, if you haven't already readily got access to a Sonic Screwdriver.

Thursday, 19 June 2014

BLUE

Each year the MS Trust and MS Trust supporters take part in 'Be Bold in Blue' for MS Awareness Week (28 April - 04 May, 2014).

 

This year the MS Trust is celebrating 21 years of providing advice and guidanceand has developed a list of 21 challenges (http://www.mstrust.org.uk/msawareness/21challenge.jsp) aimed at raising awareness of MS.

"To celebrate 21 years of providing free, positive practical information, in the run up to this year’s MS Awareness Week we’re running the MS Trust 21 Challenge: 21 ways in 21 days you can get involved and make a difference for everyone affected by MS." 

The MS Trust have a fantastic website for those diagnosed with MS or for those wanting further information with News, Advice, Publications, Research as well as Information for getting involved:http://www.mstrust.org.uk/



One of the MS Trust 21 Challenges was 'to organise a 'Be Bold In Blue' Dinner Party!'



The girls (my 'Book Group Girls') and I met up (see ICE-CREAM BLOG) and we thought that this was an absolutely splendid idea, to have a blue-themed dinner party.  We immediately brain-stormed the idea: BLUE Outfits.  BLUE Food.  BLUE Wine.  BLUE Movies.  Steady on girls!  However, it proved slightly more difficult than we'd envisaged to find a suitable date; but we did it, we couldn't find a date during MS Awareness Week, we are a bit late, but we are doing it.  We are doing it now.  Better late than never. Exactly.



We decided we wouldn't do a full Dinner Party, as that would involve cooking and coordinating dishes; and although we are a group of immensely competent women, more than capable of arranging a fabulous dinner party, the effort involved in finding a date had somewhat zapped us, had drained us of our usual legendary enthusiasm and so we decided on a 'Be Bold In Blue' Cheese and Wine Party. BLUE Cheese and BLUE Wine.   Great. We agreed we could do that.  Once we'd agreed the blue wine we'd be drinking wouldn't be BLUE NUN the real organisation started, and with our usual level of motivation and passion and fervor and gusto.



The lovely Fund Raising Team at the MS Trust kindly sent us some MS Trust Balloons and Flags and stickers and a collection box to collect the money we raised.



And then we found a variety of Blue things.  Blue Plates. Blue Napkins. Blue Spectacles.  Blue Wine Glasses.  Blue Nail Varnish. Blue Outfits. 




We were having so much fun that we were joined by the younger family members, who also enthusiastically embraced the blue theme and then we ended up watching (and singing along to) the DVD of 'Frozen'.


know that I am lucky. I know that I am very lucky. I have amazing friends. I have absolutely amazing friends who recognise the difficulties that I experience because of my MS and they accept them.  They unequivocally accept them. They know that I struggle, that I am very self-conscious about various aspects of the condition and they make allowances and exceptions; so that I no longer feel awkward, embarrassed or ashamed in the things that I now struggle to do.



During the evening in raising awareness and raising funds for the MS Trust it felt that we were celebrating the 'battle' that those of us with MS are fighting, and we were highlighting the fact that it is an on-going fight that we won't give up until we have won.  It felt as though we were indeed MS Warriors.  We were enjoying ourselves. We were having a laugh.  We were laughing in the face of MS.  This was quite humbling, but hugely reassuring to know that I have such tremendous support from my friends.



I can happily report that we had a simply splendid night; it was great fun, it was awesome and I think we definitely proved that there is a lot of truth in the statement that 'laughter is the best medicine'. 



There were certainly lots of Laughs. Balloons.  Glasses. Spectacles.  An auction.  BLUE Cheese. Crisps and Crackers.  We charged our BLUE glasses with BLUE Cocktails, and we raised them; we also raised awareness, and we raised money.  In all we raised £30 and we had a great time.  I think that is evidence of a very successful evening.



You can donate to the MS Trust:


Or have a look at their website for other ideas of how you can raises funds and awareness, and how you can have great fun doing so:


We have already got ideas and are making plans for future events; and have lots of ideas for themes.  We're already identified as date, so there is already something to look forward to, and something I shall be blogging about at a future date.  Thank You Elise, Vicki, Donna and Lynsay for being so strong, thoughtful, generous, kind and funny; and for being just generally amazing friends.

Friday, 13 June 2014

PAIN

I am in pain. It hurts.  It just hurts.  It just hurts absolutely everywhere.

Pain really is terribly unpleasant.  And it is hard to describe, to put into words just how dreadful it feels.   Just how awful it makes you feel.  How debilitating, how devastating, and how unbearable it actually is.   The Internstional Assosiation for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."  It is difficult to calculate the impact that it has on everyday life.  It just takes over and is all-consuming.


The pain experienced with MS is often neuropathic pain and is caused by damage or disease affecting any part of the nervous system involved in bodily feelings (the somatosensory system). For people with MS therefore, this Chronic Pain can be another one of those 'invisible symptoms'.  And only the person experiencing it can truly know how unbearable it really is.  How terrible it makes them feel.  This can be emotional and can lead to distress, fear, anger, agony and frustration.  This is all rather miserable and can affect your emotional response, affect your mood and therefore your ability to cope and deal with everyday activities.  This is exhausting.  This can make you grumpy.  I know it makes me grumpy. The proverbial 'bear with a sore head', the bear with a sore everything.


Being in pain, to constantly hurt or ache is exhausting.  It is almost a torture of sorts.  It is unbearable.  To constantly and continually be in pain, pain that is relentless and persistent and incessant and painful.  When there is no relief. When there is no escape.  It gradually wears you down.  It gradually wins.


For people with MS the pain they experience isn't that acute pain of stubbing your toe, or stepping on Lego, it is a chronic slow, persistent, lasting, continuous, nagging, irritating pain which is likely to be the result of nerve damage (in either the brain and/or the spinal cord) that might cause a range of sensations, and that may take a variety of sensory forms, such as:

  • Squeezing or crushing
  • Cold
  • Hot or burning
  • Sharp or Dull Sensations
  • Like ants under my skin or ‘creepy crawlies’
  • Creeping
  • Aching
  • Pins and needles

This neuropathic pain may be caused directly by nerve damage, or indirectly, due to other MS symptoms.  This is referred to as 'Dysaesthesia' or 'Paraesthesia' (altered sensation).


There are a number of natural pain management techniques.

  1. Endorphins: these are the body's natural pain relievers, and they can be as strong as many pain relievers. They work by blocking pain signals from ever reaching your brain. Endorphins also help alleviate anxiety, stress, and depression, conditions that often accompany and exacerbate chronic pain.  Any activity that gets your blood pumping for a sustained period will release pain-relieving endorphins into your system.

  1. Friends: those who have regular contact with others, (and with others dealing with similar forms of chronic pain) find that their pain becomes more manageable (see my FRIENDS BLOG).  You can laugh with friends, you can cry with friends, you can drink wine or drink tea and eat cake and chocolate and ice-cream with friends.

  1. Get Outdoors: getting out and getting some fresh air really does do the power of good.  10-15 minutes of sun exposure a day can help the body produce vitamin D.  It has been found that people who got the recommended daily 400 to 800 IU of vitamin D experienced less pain than those who didn't.

  1. Meditation: meditation and relaxation and mindfulness comes in a huge variety of forms, find one that works for you.

  1. Sleep: it is important to get a healthy restorative amount of sleep, this includes the importance and power of naps.

There are also Alternative Therapies that are thought to help with the management of pain, such a Tai Chi, Yoga, Massage and Acupuncture.   And there are Complimentary Therapies such as Cognitive Behavioural Therapy and Distraction Therapy, which are also thought to be helpful.


Pain is unfortunately a factor of MS for a large number of people.  The MS Trust quote reports that suggest that 'up to 80% of people with MS may experience pain at some stage'  Different types of pain are managed in different ways. And as with everything with MS, no two are the same.  Pain is subjective.  Pain is unpleasant.  Pain is real.  There isn't an answer.  There isn't a solution, when you sit there with tears rolling down your cheek.  There just isn't.  You know your body better than anybody else, you just need to find what it is that works for you.