Wednesday, 31 December 2014


Well ... that is 2014 all but done and dusted ... a whole year of BLOGGING ... 52 BLOGs written and completed and posted ...

It is fair to say that 2014 has not been as easy year; not at all, not by a long chalk ... it has been awful, really awful ... it has been a bitch ... but I am still here, perhaps not where I'd hoped to be or even where I'd like to be, but I'm here.  So I might as well look at some highlights ... of which there are surprisingly quite a few ... 2014 might not have been great, but there have been some great moments involving great friends most, if not all, involve Friends, Coffee, Horses, Hounds, my Cat and Benedict CUMBERBATCH ... and of course Papa ...

In no particular order ... :

A lovely generous surprise gift, 'just because' a beautiful bracelet 'a little strength':

A Puppy for Brian ... he called him 'Blu':

Horses: 'Benson', 'Freya' and 'George':

Hounds: 'Sonic', 'Stanley' and 'Bella':

My Cat: 'Albion':

'Be Bold In Blue', raising funds and raising awareness of MS with the girls:




Wednesday, 24 December 2014


I don't want a lot for Christmas...  Or, in the dulcet tones of Mariah Carey:

"I don't want a lot for Christmas;
There is just one thing I need;
I don't care about the presents;
Underneath the Christmas tree" ...

Growing up I was one of those girls that just wanted a pony.  I dreamed of owning my own pony to ride and groom and feed carrots.  That was it.  Nothing else.  If you'd have asked me as a child what I wanted for Christmas ... I just really wanted a pony.  Perhaps some felt-tip pens too.

Now that I have grown up and I am living with MS, I find that the things that I want, the thing that I really really most want is for an 'MS Free Christmas'.  What I would really like most are:
  • For the pain to end
  • A reduction in Fatigue: aka the energy to meet with Friend and to enjoy life.
have kind of got used to my other symptoms and have lived with them for so long (I was DX in 2011, but have lived with symptoms for much longer) - symptoms such as poor balance and cognitive difficulties and mood swings and dysaesthesia and bladder malfunctions and difficulties walking) that I have forgotten what it is like to live without them.  They have become part of who I am, I have adapted to accommodate them within my everyday life.  They are getting worse, but I have begrudging adapted, I have learned to adapt and accept that they are part of who I am, and so I just get on with it as best as I can.

But you do have moments, I have moment, when you think, when I think 'An MS free Christmas', how simply fabulous would that be?  But, Yes, if I got those things, if I got the things that are top of my list for an MS Free Christmas, if I got an end to my pain and a reduction in Fatigue: aka the energy to meet with Friend and to enjoy life, then I guess I would still probably, secretly still really really like a pony too... or a donkey ... and probably a puppy ... or a kitten ...
And I guess I would like World Peace and an end to hunger and an end to poverty and ease of access to clean drinking water.  I mean this is, as we've said the season of good-will to all men.  I am also reminded that 'Christmas is the time of year to be Grateful and count your blessings'.
recognise that even living with MS I do have a tremendous amount to be grateful for.  So, what am I grateful for?  What blessings am I counting?
think that I am most grateful for my friends.  To those kind, loving, energetic, strong, supportive, caring, courageous, patient, amazing; absolutely flipping AMAZING people in my life that I am both proud and grateful to call my friends.  I know that they are there for me; and that means the world.  They have been there for me when I have needed someone to be there for me.  They have not always been able to sort things out for me, or even to help, but they have ensured that I haven't faced things alone.  This is indeed a true test of friendship.  More than I could ever ask for.  Something that I cannot repay and something I am immensely grateful for.
So, What do you want for Christmas?  What is top of your Christmas list?  Whatever it is that you want, or think that you want, do spend a moment thinking and listing the things that you already have and that you are grateful for.  But, I do hope that you all get a pony.
May I wish you complements of the season and wish you a very Merry Christmas.  And in the words of Tiny Tim, "God Bless us everyone." (Charles Dickens, A Christmas Carol, 1843).

Friday, 19 December 2014


". . . and they call it Puppy Love, well I guess they'll never know how the young heart really feels. . ."
I've fallen in Love.  And he's small and cute and bouncy and perfect.  He is 'Blu', or 'Flomiss Summer Snowfall' to give him his Kennel Club Registered Name.  He's a beast.  He is GORGEOUS.  He isn't my dog.  He belongs to my friend Brian.  But I love him.
'Puppy Love' is also known as a 'simple infatuation' or a 'crush'. This therefore is an informal term for a type of love.  A powerful type of love, nonetheless.  A type of affection.  A type of adoration.  A type of worship.  It is often used to describe 'young love'; 'teenage love'; 'adolescent love; the type of devotion that is demonstrated by a puppy.
Paul ANKA released the song 'Puppy Love' in the 1960s; it was re-released by Donny OSMOND in 1972.
Sigmund FREUD understood the power of early love.  In the Urban Dictionary 'Puppy Love' is sadly described as a love that will never last, due to the relationship being a love between a young couple - a 'blind affection' immature, young love, not real romantic love.
The Urban Dictionary in describing 'Puppy Love' as between a young couple, goes on to state that 'Puppy Love' "typically occurs before one person becomes a bitch."   Well Really!
For me 'Puppy Love' is 'Blu'.  'Blu' is Brian's puppy, and he is now six months old.  We collected him when he was twelve weeks old, and WOW how that time has flown, and what adventures we have had including two Leicester Animal Aid (LAA) shows and places in the 'Cutest Puppy' classes, which won him medals.  Trips to the Park to chase squirrels, and trips to 'Pebble Beach'.   Initially Blu was reluctant to even paddle at Pebble Beach, but now he is much braver and very much enjoys splashing about and getting wet through.
The unconditional love of a puppy largely, it has to be admitted, is associated with a love of Dog Biscuits and of Dog Treats.  That his 'unconditional love' is perhaps 'cupboard love'.  But he is also rather partial to an ear rub and a tummy tickle.  He rather enjoys digging; and he likes his dog toys - including his 'honking' Duck.  Just the thing for a Golden Retriever.
Blu has had a huge impact upon Brian's life, being his reason to get up every morning, and his reason to get out and go for a walk and be social and talk to the other dog owners and dog walkers.  It is hugely social, and gives them both plenty of exercise.  Blu is Brian's constant companion.  All sorts of adventures.  They are currently in training for 'Best Sausage Catcher' at next year's LAA Show's.  Brian admits that Blu is the centre of his world, and he'd be lost without him.  And, looking at Blu, I think the feeling is mutual. It is true that for Brian Blu is an important part of his life; but for Blu Brian is his whole life.
And I admit, Blu has also had a huge impact upon my life, he is always pleased to see me, wags his tail, and gives me a reason to get up and get out and join Brian for a walk.

Friday, 12 December 2014


I'm tired. I want to sleep.  I just want to sleep.  When I'm asleep it doesn't hurt.  It doesn't hurt anymore.  There isn't any pain when I'm asleep.  No pain physically.  No pain emotionally.  The thing is that I've just had enough.  Enough of the pain.  I just want to sleep.
"To sleep perchance to dream." Shakespeare, Hamlet, Act3, Scene1

This is the part of Hamlet's famous soliloquy which begins, "To be or not to be", which reveals Hamlet's thoughts on suicide and addresses Hamlet's mental anguish.  Hamlet it tortured by the fear that there might not be any peace after death.  "For even in that sleep of death what dreams might come?"
Sleep is restorative.  Sleep encourages and accentuates the growth and rejuvenation of the immune system.  There are many benefits of sleep.  We are more productive during the day following a good night sleep.  Except, quite often I can't sleep.  I have Insomnia.  Insomnia is a sleep disorder.  Despite spending all day feeling fatigued I experience Insomnia at night, not every night. But on those occasions when I do it really is the worst kind of vicious circle: tired all day / can't sleep all night.
So, I can't sleep.  I have no escape.  I have no escape from the pain.  I lay awake, and I think and I think and I over-think.
Insomnia is difficulty sleeping.  Difficulty in getting to sleep or difficulty staying asleep for long enough to get a good night sleep and rest; enough to wake up feeling refreshed the next morning.  Insomnia and lack of sleep can lean to fatigue; which can affect your mood and affect your relationships with loved ones and others. Makes you irritable. 
Sleep is often the stuff of fairy tales: 'Sleeping Beauty' is a fairy tale involving a Beautiful Princess, a sleeping enchantment and a Handsome Prince.  The Princess pricks her finger with a pin and falls asleep for a hundred years, only to be awakened by true loves kiss.  'The Princess and the Pea' is a fairy tale involving a Beautiful Princess and an uncomfortable bed.  I love fairy tales.  I love sleep.  I love pain-free sleep.
So. Good Night. Sweet Dreams

Saturday, 6 December 2014


What a treat.  To be taken out for coffee.
Coffee and Good Chat.  Two things I like best.
Coffee, Good Chat, and Cake.  BOOM!  Win Win Win.
And Caffeine has been found to be a potent pain killer.  So, when my MS is causing me chronic pain, which it does; when I am in real real PAIN, what could be nicer, could be lovelier than to be taken out for coffee.  Or when I am feeling SO terrible, so so very terrible that I can't even make it out, to have such a wonderful friend that will think to bring me coffee. How amazing are my friends. Even Sonic was impressed.
Caffeine is a powerful stimulant that affects the central nervous system.  And Caffeine is an added ingredient to many over-the-counter and prescription pain medications, as it aids the 'take up' on the pain medication and its absorption into the body.
There are probably four people that I really really should thank over everyone else; who have ensured that I am taken out for coffee, or stay in for coffee.  In no particular order: Papa, John, Jill and Geraldine. Thank You. Thank You. Thank You. Thank You.

Friday, 28 November 2014


I found myself admitted to the Leicester Royal Infirmary (LRI) last week.  The LRI is part of the University Hospitals of Leicester NHS Trust (UHL-tr).  I was in pain.  I really was in a lot of pain. I have previously BLOGGED about Pain (see previous PAIN BLOG).  I was in so much pain I wasn't eating and drinking and was becoming really rather dehydrated as a result.

To be in pain is awful.  It is wretched.  It is hateful; excruciating and all-consuming. It is fair to say that it is terribly unpleasant.  It hurts.  It just fucking hurts; it hurts every-fucking-where.  I was in pain and I was dehydrated.  I was dehydrated because I hadn't drunk enough to take my pain medication; I hadn't drunk enough because I was in pain.  It is a vicious circle.  It is a vicious circle that needs to be controlled.  A vicious circle that needs to be stopped, that has to be broken, and for me the best way to achieve this and to break the cycle is the stop the pain.

The MS Trust quote reports that it is suggested that "up to 80% of people with MS experience pain at some stage."  So, after some too-ing and fro-ing and lost notes and juggling of beds and hanging around and taking blood samples they decided that they were keeping me in and I was being sent from the 'Acute Medical Unit' in the Balmoral Building, where I had initially been assessed, to Ward24 in the Windsor Building.  Ward24 is largely but not exclusively a Neurological Medical Ward.  On Ward24 I was treated with both care and respect and dignity and compassion and empathy by the various nurses and healthcare assistants and hospital personnel.

University Hospitals of Leicester NHS Trust promote its value which is to practice 'caring at its best'; and while my visit wasn't faultless and there were a couple of minor issues regarding clear communication and management of patient expectations; the standard of care I received was impeccable, and while I don't like to name names as inevitably you forget someone and have to later go back and include them; it really would be churlish of me not to lavish at least a little praise firstly and fore mostly upon Carol WARD and Liz GALVIN; but also upon Sophia PATEL and Dawn WILLIAMS who all went above and beyond to ensure that my stay was absolutely as comfortable as possible. And I must say Thank You to Ann TOVEY with whom I shared a room and who was very good natured and friendly, who didn't snore and who lent me her shampoo.

NHS England drafted a Vision and Strategy in December 2012.  'Compassion in Practice: Nursing, Midwifery and Care Staff - Our Vision and Strategy'.  This Vision and Strategy recognises that "To be a nurse, a midwife or member of care staff is an extraordinary role."  Which it certainly is.  It also stated that "Our draft vision was underpinned by six fundamental values: care, compassion, competence,communication, courage and commitment."  The Nurses and Auxiliaries and Care Staff on Ward24 demonstrated all six of these fundamental values, and are indeed a credit to Ward24, to LRI, to UHL-tr, and to the NHS.

The staff ensured I was hydrated with water (Liz) and tea (Carol) - a very high priority and very much appreciated.  They explained all the buttons of how to operate the moving bed which kept me entertained for a while (Yes! I am easily amused) and a million little things that they did that made me feel that my care was a priority to them, and that nothing that I asked was too much trouble.  There are others, many others that I should thank, representatives from Occupational Therapy or Physiotherapy (I'm not sure which) who were incredibly helpful, but especially Kareena BASSAN the Physiotherapist who sorted me out a pair of matching crutches, which was marvellous and who spent the time assessing me with them and ensuring that I was able to use them with confidence.

I know people complain about Hospital Food, and complain about the quality of the food provided in hospitals. But I have to say I have always thought that it would be a logistical nightmare of a task to provide good quality nutritious food of a variety that caters for personal dietary needs and particular types of food like Kosha, Halal, Vegetarian, and Vegan to a whole hospital full of people on time.  To provide food that is nutritious, tasty and appetising; food of a suitable variety and choice to meet religious, cultural and/or dietary needs to a huge number of people at a specified time is no mean feat.  And at a cost too as there are strict budgetary considerations.  So, I am really rather reasonably impressed. The food that I had was OK, and I had a choice of fresh fruit.

The catering staff were always cheerful and friendly whilst being busy and engaged in the operation of the delivery of food choices, and I especially looked forward to Balvinder Kaur DHADER delivering my juice, tea, toast and a banana each morning for breakfast. Thank You.

In August 2014 new Hospital Food Rules were introduced which highlights the expectation for the hospital to provide a higher standard of food under the new measures announced by the Secretary of State for Health (Jeremy HUNT).  Although the 'Campaign for Better Hospital Food' said that the proposed changes were 'woefully inadequate'. TV Chef James Martin of 'Ready Steady Cook' and 'Saturday Kitchen' fame has embarked upon a mission to transform the standard of the nation's hospital food (Operation Hospital Food) with some positive results. As I said not an easily task to be the food provider, so I am very thankful for what I received.

And then, my tremendous thanks go to the Neurologists and Neurology Team, especially to Dr. Critchley who it is noted looked especially dapper in his Bow-Tie; who conducted his rounds with professionalism, understanding and good humour, which is amazing considering he has the unenviable task of trying to diagnose and find out what is wrong, when MS is widely known as the 'snowflake disease' i.e. no two are the same and it must be like trying to 'understand the understandable' and 'diagnose the un-diagnosable'. Good Job Dr. C.

So, my HUGE thanks to the wonderful staff of UHL-tr (NHS) of the LRI and of Ward24 for caring and looking after me.  Your efforts were very much appreciated.  I do hope that I don't see you again soon, but it is reassuring, incredibly reassuring to know that should I should be required to make a return to the LRI, to know that it is staffed by such lovely caring and hard-working staff who do a tremendous job to ensure that their patients are as comfortable as possible and are well looked after.

Thank You.  You do a great job, and you do make a difference, the world of difference, more than you know.