Monday, 16 March 2015

UHL-tr2

I know that it is March. It is March again. It was March last year too, and the year before. And I know that March is MS Awareness Month. It is MS Awareness Month again. It was MS Awareness Month in March last year too, and the year before. But how to mark it? How to 'celebrate' it? How to Raise Awareness?  That is what MS Awareness Month is all about, Raising Awareness.

Trishna Bharadia has already done stirling work this month. Trishna, already an MS Champion, was chosen to appear in the 'People's Strictly' in aid of 'Comic Relief'.  Trishna has done Marvellous and Remarkable and Splendid work. She has flown the MS Flag for everyone with MS and passionately and courageously she (along with her lovely dance partner Aljaz Skorjanec) proudly lofted the MS Flag up as high as she could reach and waved it with enthusiasm. Trishna and Aljaz have trained and worked hard, really hard to learn their dance (the Jive). Well done Trishna. You were amazing. You raised money and you raised awareness. You were our MS Dance Star. What have you done today to make you feel proud? Trishna Bharadia you have achieved a stack. You can certainly feel very proud.  Rightly Very Proud. On behalf of everyone with MS, Well Done you. Alijaz wasn't bad either.


So, what am I going to do? Well, it turned out that I am going to highlight MS Awareness Month by feeling terrible and going to Hospital, to the Leicester Royal Infirmary (LRI). Part of the University Hospitals of Leicester (UHL) NHS Trust initially to the Urgent Care Centre (sort of what was A&E). In the Urgent Care Centre I was given something to stop me feeling sick and something for the pain and where I was put on a trolley and put on a drip and then despatched off onto Ward15 the Medical Assessment Ward.

When you are lying on a Hospital Bed, really not feeling your best and certainly not looking your best, when the pain really becomes so unbearable so all-consuming that you think you want to die; when you really would make any sort of deal with anyone who could offer you a viable solution. To anyone who could ease your pain. When all you want is just for the pain to end. When you have dealt with pain, and lived with pain, and carried on with pain, and suddenly something within you shouts 'ENOUGH' I simply cannot do this any longer. And when you once were able to carry on with the pain living and carrying this burden of pain with you at every waking moment, at that point you can't eat, you can't sleep, you can't drink, you can't swallow, you can't think and you can't speak. And for anyone who truly knows me, they know it takes a monumental amount of anything to get me to shut up; to not speak. But if you are in enough pain, you do eventually shut up. Even me. Even I shut up if I am in enough pain.


So there I am. Wheeled on a trolley in my Onesie and Boots to Ward 15; the Medical Assessment Ward of the University Hospitals of Leicester (UHL) NHS Trust. Lying on a Hospital Bed on a drip in my pink Onesie (with the hood with ears) and my Boots. Unfortunately not an Orange Onesie to raise MS Awareness. My hair un-brushed. Basically, it is fair to say I looked ROUGH. I like to think that somehow through my pain I somehow managed and looked strangely attractive. But, no.  Alas.  At this moment in time I looked ROUGH. Fair to say really ROUGH. Not in the slightest FOXY.


The staff on Ward 15. The Staff Nurses and Health Care Assistants and the Doctors. These people are fabulous. It is always difficult to express thanks because of the fear of not mentioning someone ...but Carly was lovely straight from the moment I arrived in Bay 4. She welcomed me and introduced herself and said that they would help. I probably grunted something incoherently, which meant 'I am really pleased to meet your acquaintance and if you could do something about the pain that would be marvellous'.  


Ward 15 has a high turnover of Patients, as they more from A&E / the Urgent Care Centre to be found a bed and placed on a relevant Medical Ward. But despite this high turnover, quick pace and huge amount of paper work that is quickly amassed of Blood Pressure and Heart Rate and Temperature and the like. Everyone is treated friendly, quickly, politely and calmly. Even in my state of not being quite with it, I was able to recognise that everyone is treated in a reassuring and kind manner.


And things do quieten down in the evening. The Nurses arrived for the night shift. These are people who have chosen a job of looking after the sick and ill and injured and those not always able to help themselves. These people do have their own dramas and lives and worries and domestic trials, but they put them on hold and come to work to put 'your/my' health and well-being as their priority.  This really is a self-less task, and one which is acknowledged but not probably in the manner that it should be.  That evening; Saturday Night; I was in a hospital bed in my Onesie.  By now I had put on a pair of socks rather than my boots. I felt like crap and was still fairly uncommunicative. But that didn't really matter too much as that Night our Staff Nurse was James; and to be honest I am not sure I would have got a word in edgeways! 



James was hugely engaging to listen to. Quite soothing and reassuring. Nothing was too much trouble. At some point he decided that the main lighting on the Ward was too bright and suggested we move to more 'mood lighting', and he achieved a much calmer and relaxing environment.  He then apologized for lack of a 'DISCO Ball'. He took time to engage everyone in turn. Nothing was too much trouble for James or Hayley. Nothing. It was all very ordered and systematic. Although James is slightly OCD about the curtains that divide the bays, and gets really quite annoyed and cross that the Doctors don't seem able to close them after they have examined or spoken to a patient. At one point someone on the ward commented that they were dying for a 'Cup of Tea'. No sooner was this said than James had fetched the tea trolley and offered to make everyone a drink.  James was busy; he had more urgent things to do. But he recognised that there is a big different between what is urgent and what is important. A patient needed a cup of tea.  A simple thing. A simple request. A simple pleasure. A simple gesture. But so reassuring. James rather took the bull by the horns at this point and with gusto declared that if we were having tea we were at least having biscuits and cake too. And to his credit he indeed supplied tea and cake to those who wanted it.  I was still feeling nauseous and somewhat off-colour, not 100% so turned down the kind offer of a Cuppa; again testament to the fact that I really felt quite shockingly wretched, and pretty damn rough, as I never ever refuse an offer of a Cup of Tea. He also told me an amusing story that involved RAF Uniform, Singapore, Gin, and Raffles, and being outrageously drunk.


I made it through the night and as the dawn approached I was hooked up to my third consecutive drip. Being in hospital is scary. No matter how old you are. No matter what day it is. No matter what is wrong with you. It is frightening and it is lonely.


The day shift returned and the night shift made their farewells. And Carly and Katriona were back in charge. Reassuring, and ensuring that everyone was as comfortable as possible, whilst swiftly and efficiently dealing with the paperwork and day to day matters.  Getting us up and washed. I unhitched from my drip and stumbled towards the shower. I was in there for ages. You don't think very quickly and you don't move very quickly when you are unwell.  And everything is a monumental effort. Everything. But eventually I was clean and into my clean WonderWoman Onesie. And to compliment the look I was given some UHL-tr Socks. How splendid are they?


Rose, An elderly lady of 89 (as she kept reminding anyone who would listen) demanded that her Nurse demonstrate the absolute Patience of a Saint.  Rose was rather loud with her cries of 'HELP'. 'HELP ME'. 'I CAN'T BREATHE'. The Nurses checked her Oxygen levels, which were c. 96%. They gave her an oxygen mask. But she kept taking the mask of to shout. Kim was calmly polite and reassuring but firm. Rose was 89. SHe was in hospital. She was alone and she was frightened. I am not 89, but I was alone and frightened too.  We all were. The uncertainty and diagnosis and treatment. It is frightening. This is when Nurses appreciate the importance of the touch of a hand. They understand kindness. They recognise that the touch of a hand can convey so much, can reassure. But this simple kind gesture also conveys a lot of information to the Nurse.  Is the patient is hot or cold? Is there skin clammy or dry. They are constantly checking even when you don't realise that they are. One noisy patient does unrest the rest of the Bay.


The lady moved into the Bay next to me was 'Nil By Mouth'. When she arrived the nurses spoke to her, introduced themselves and reassured the patient as much as they could. Katrina then without being asked, using her previous knowledge and experience, went and fetched the patient a small glass of water and some mouth foam swab things. She explained to the patient that 'Nil By Mouth' patients can often experience a dry mouth that if this happens it is helpful to use the swabs to moisten the mouth. Katrina did this without being asked, and this again demonstrates the kindness of the staff; how they go the extra mile to ensure the well-being of the people in their care.  All in a days work. But those small gestures mean so much to someone who is alone and frightened.
 

I saw a Neurologist who asked me some questions and examined me and tested my reflexes and tickled my feet; and then I saw Doctor Jackson. Doctor Jackson was lovely. Very calm. Very kind. Very reassuring. And able to communicate. Communication is so essential. To clearly communicate, not only to exchange information but to convey feeling or thoughts or ideas. Communication is such a vital skill. And listening is as vital a part of communicating as talking.  Doctor Jackson was warm and humorous but hugely reassuring and quickly imparted a confidence in him.


Having been prescribed some Amitriptyline to complement my Pregabalin I was told I could go home.  And so I went. I packed my bag and called my Dad.  I went through the Hospital, not really giving a hoot that I was wearing my WonderWoman Onesie and Hospital issue Slipper Socks and even though I was feeling much better than I did, I still looked really quite rough. I went with my bag and my stick to the entrance point where Papa collected me and took me home. Home to my cat and hot water bottle.

Wednesday, 11 March 2015

NARBOROUGH HALL

If I have got to get a birthday present. Or any kind of present. Something pretty. Something unusual. Something thoughtful. The first place that I will think to visit is Narborough Hall. I love Narborough Hall. Everything about Narborough Hall. The choice of beautiful, individual, quality items means that you are literally spoilt for choice.
I am a letter writer. I believe that 'hand-written love letters will never so out of style'. These days I send more cards than letters. At Narborough Hall the range of cards is tremendous. Covering every occasion. Birthdays. Weddings. Christenings. I send cards to cheer people up, to let them know that I am thinking of them. And just because. I am literary spoilt for choice.
And then there is the FABULOUS range of Jewellery. A friend bought me 'A Little Strength' bracelet (from the Joma Jewellery range) in recognition of my daily battle with MS. I have also bought this bracelet as a gift for a friend experiencing health difficulties and also for a friend whose little girl was in the Intensive Care Unit at Great Ormond Street Hospital (GOSH), a worrying and frightening time for a parent who felt helpless to help her little girl. The bracelet was a reminder for her to 'Stay Strong'. And this to me sums up the range of thoughtful gifts available at Narbourgh Hall. Something simple and pretty and thoughtful.
The staff at Narborough Hall know the choice of stock available, and they are charming and friendly. They go the extra mile to ensure that you have a lovely shopping experience. And when you buy an item it is all carefully wrapped with care and attention. And they smile. Such a small gesture, but a smile is one of the things that makes being at Narborough Hall so lovely.  We talk about 'Retail Therapy' and that is exactly what they offer, 'Therapy'.
So I was delighted to visit for the 'Spring Celebration' this weekend. As well as Perfect Gifts. Beautiful Jewellery and the absolute Friendliest Staff, there were Macaroons and Peach Fizz. How splendid. It is no wonder that Narborough Hall has been nominated in two categories in the Leicester Mercury Business Awards (the 'Sales & Marketing' category and the 'Retail Business Award' category).
So if you are looking for the perfect gift, or no matter what the present-buying challenge or if you just want to see nice things in a lovely environment, and you are in Narborough. Do pop in to Narborough Hall. You won't be disappointed.

Sunday, 8 March 2015

PONY PAIN MANAGEMENT (PPM)

I hurt. I really hurt. I could cry. I really could cry. Just sit and sob. But, I choose NOT to cry. I choose to put on my big girl pants, my thickest tights and my biggest boots (also several jumpers and two coats) and go to the stables.
At the stables there is George, Benson, Jack and Robbie. And of course Max the resident Jack Russell and 'Ratter'. It is not clinically proven, but that doesn't make it any less true, that it really is the BEST Therapy a girl could hope for: Pony Pain Management (PPM).
The fact that Rose, Jules, Tina and Emma are there for tea and biscuits and chat too, is just an extra bonus.
So, now I am dirty and smelly and in pain. But, somehow it seems worth it. That I am dirty and smelly and in pain, but I have spent time with the ponies, and somehow I am happy.

BOXING

My amazing friend. My really truly a-fucking-mazing friend Ms Elise Bethancourt Barker has been doing something wonderful and slightly surprising. Elise has taken up Boxing. Taken up Boxing in an attempt to raise money and raise awareness of cancer research in aid of Macmillan's Cancer Support. She has spent the past few weeks training hard, really hard. No mean feat with a demanding job (A Director of Marketing and Communication somewhere in the NHS) a demanding husband (Iain) and demanding children (Harrison, Max and Sophie). So, it is fair to say that Elise already has her hands pretty much full to try and fit in training too.
It isn't surprising that Elise is doing something wonderful. It isn't surprising that she is doing something wonderful for Charity. It is slightly surprising that that something wonderful is boxing.  When I think of boxing I think of black eyes and broken noses, not something I would associate with Elise!  Elise is Boxing with 'Pink Collar Boxing' (www.pinkcollarboxing.co.uk). And has adopted the 'fighting name' of Elise 'Boom Boom' Barker.
So, off we went to support her in her first 'bout' I think that they call them at the City Rooms in Leicester. I must admit I was little bit scared (mainly for the other person!) and I mean I'm a gentle person, I don't do violence ... BUT this is my friend and I don't want her to get hit and I don't want her to get hurt and I want her to WIN ... So, Take No Prisoners Barker ... Hit FAST Hit HARD ...
What a splendid way to celebrate #InternationalWomansDay?
Sophie was feeling quietly confident, she explained her Mum's preparation involved a lot of thought and tactics. And Max added that his Mum was 'Prepared, Tactical and Determined'. 
Iain had ensured that 'rent a crowd' were there: Mark & Jo, Richard and Jeanette, and Chris & Rachael. And they were in good voice.  The Music certainly help to build up the anticipation and the atmosphere. 'Snap: You've got the Power'; 'Queen: We will rock you' and of course, 'PJ&Duncan: Let's get ready to rumble.'
Elise seemed calm, although probably hiding the nerves and chaos of emotions, and displayed her legendary 'steely determination', a look she has been practicing for years and which seems to suggest 'Just Don't'; 'Don't Mess'; 'Or I may not be responsible for the consequences'.
know very little about boxing but found a few Muhammad Ali (he knew something about boxing) quotes to inspire her: "Float like a Butterfly, sting like a Bee. The hands can't hit, what the eyes can't see."
Actually, considering I'd always considered myself somewhat of a pacifist, against the whole notion of violence, but actually I really rather enjoyed it. I think 'PJ&Duncan: Let's get ready to rumble.' over-excited me!
Iain didn't have any considered, helpful last minute advice for Elise, but confidently commented: 'She knows what she's gotta do.'  Yep, So, Take No Prisoners Barker ... Hit FAST Hit HARD ...
It was all quite exciting, and the competition was tough. But Elise WON ... Fantastic Effort. Well Done Elise. We are all very proud of you.

Wednesday, 31 December 2014

REVIEW OFTHE YEAR: 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:

Coffee:

Benedict CUMBERBATCH:

Papa:

Wednesday, 24 December 2014

CHRISTMAS

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).