Friday, 18 April 2014

MS APPs

"You've got MS?".  "OOOooohhh, there's an APP for that!".


What?  Seriously?  An APP?  Do you mean a 'Mobile Application'?  Do you mean a 'Mobile Application' for MS?  An APP, a 'Mobile Application' for MS for my Mobile Phone?  Is there an APP for everything these days?

Apparently, yes there is!   Pretty much.

There are approximately 200 people every week that are diagnosed with multiple sclerosis (MS).  The National MS Society estimates that around c. 100,000 people in the UK have MS, and there are approximately 2.5 million people worldwide who are thought to be living with the condition.

There is currently no cure available for this autoimmune disease, although there are treatments now available to slow the progression for people with Relapsing Remitting MS (RRMS); drugs which aim to reduce the severity of the relapse and the frequency of the relapses.



There is no cure, but now there are APPs; Smartphone APPs - for both Apple iPhones and Android Phones, which can keep you informed and can even help you to manage your MS. These APPs aim to inform and aid those with the disease, and to assist them to live a more comfortable life with MS.  There are various APPs - some generic, some more specific to deal with more precise aspects of the disease, for example there are APPs specifically related to Anxiety.  Blimey.


The 'MS Diagnosis and Management' APP was developed in collaboration with the National MS Society and, in my opinion, is a good starting place, if you are looking for an APP with an overview of general information relating to MS. The APP is free for both iPhone and Android.  The APP is informative, discusses the four disease courses: Benign MS, Relapsing Remitting (RRMS), Secondary Progressive (SPMS), and Primary Progressive (PPMS) and features up-to-date information on the diagnosis, classification, and management of MS.

There is an APP which has been created with the caregiver in mind.  There are APPs which help to keep track of your health records and act as Journals.  The APP 'MS Journal' may therefore be a helpful APP to help keep track of important aspects of the condition, such as medication.  There are some APPs that give expert advice and some that offer more general help and support. 

There is an APP called 'Momentum Magazine' which is free for both iPhone and Android, which again has been developed by the National MS Society. Momentum Magazine, is a quarterly publication, and is apparently the most widely read MS-related publication in the world covering all aspects of the disease, and living with the disease.


There is also an APP which acts as an 'MS Pedometer' helping those with MS to monitor their mobility, to encourage them to keep active and exercise, all of which can be an issue for people with MS, due to fatigue, muscle weakness, and/or vision problems.  With so much to keep track of each and every day even the healthiest individuals, without 'brainfog' could forget important tasks. The memory of someone suffering from MS may not be quite as quick and astute and may be significantly impaired and slowed (due to cognitive dysfunction) so it could be extremely useful to have information easily accessible on a Mobile Device or SmartPhone.  'MyMSTeam' is an APP and Social Network site designed for people with MS.


An APP I just found only last weekend, by accident is called 'Seeing MS'.  This APP is free for both iPhone and Android.  They also have a website:http://seeingms.com/.  The APP is a introduction to a global photographic project that visualises the symptoms of multiple sclerosis and is all about using photography to expose the invisible symptoms of MS.  There is video on their website and the video, which really is worth watching is also available on YouTube:https://www.youtube.com/watch?v=Mu1Y5Qnoy84&feature=youtu.be


Technology really is amazing.  The speed with which technology is being designed and developed is incredible. We live in an age of technological development and advancement.  The internet is an immense and exciting source of knowledge and information,including audio podcasts and BLOGs all of which are helpful and useful and informative and can be accessed and shared though computers, tablets and through the modern technology that is your Mobile Telephone.

Friday, 11 April 2014

WAR HORSE

I haven't seen the film 'War Horse'.  Of course I haven't seen it.  I love horses, and I am still traumatized from having read 'Black Beauty' when I was c. seven years old.  And even though this is 30+ years ago, these things stay with you.  I really don't think I could face watching the film 'War Horse'.  The trauma.  The upset.



Both the film and the play are based on the book by Michael MORPURGO (an acclaimed children's writer).  'War Horse' was a best-selling novel in 1982. The 2011 film adaptation was directed by Steven SPIELBURG.  I know that Benedict CUMBERBATCH is in the film, and Tom HIDDLESTON and that knowledge does make it rather tempting, but emotionally, I still don't think that I am ready.  I know that I'm not.




But, I have to say that the stage play looked amazing. 




The stage production has met with much critical acclaim and received much attention due to the amazing and innovative 'horse choreography' i.e. the use of 'life-sized' horse puppets.  The stage production has been in the West End since 2009.  It has been on Broadway, and has toured the UK, US, Canada and Australia; and has won a host of awards.





The stage adaptation from the National Theatre on the South Bank was being broadcast live into cinemas, so after much deliberation, I thought that I would like to go and see it.  My lovely brother kindly got me two tickets.




I was in Mrs. PHILLIPS class when I read 'Black Beauty' (my first year of Junior School, c.7 years old), so I thought I would ask May (I am allowed to call her May now) if she would like to accompany me to watch 'War Horse' (and seeing how it was her husband who had taken me to the Cinema to see 'The Railway Man' see previous CINEMA BLOG) I thought that May deserved a treat and a night out with me!).


So we (May and I) went to the Odeon - Freemans Common, in Leicester to see 'War Horse Live' - a broadcast direct from The National Theatre, in London. Firstly what a fantastic idea.  To broadcast live The National Theatre’s internationally acclaimed production of 'War Horse' into cinemas around the world.  To be able go to the cinema to see a live show.  To enjoy a live theatre experience in the comfort of your local cinema.



It really did feel like you were watching a live production, I mean you are, but it doesn't seem, or at least I didn't think, that the live performance lost anything by being shown on screen.  We even had ice-cream in the interval at half time.   It was ACE.  I did really enjoy it.


They are broadcasting 'The Curious Incident of The Dog in the Night Time' on 22.05.14; the adaptation of Mark HADDON's best-selling novel - so hopefully I am going to go and see that too.  I wished I'd have known about the 'Coriolanus' broadcast on 30.01.14, with Tom HIDDLESTON and National Theatre Live’s broadcast of 'Frankenstein', directed by Danny BOYLE, with Benedict CUMBERBATCH and Jonny Lee MILLER, on 30.10.13. 



If you are interested in more Information regarding National Theatre Live it is available on the website: http://ntlive.nationaltheatre.org.uk/productions  I wholly recommend it.  Give it a go.

Friday, 4 April 2014

FATIGUE

I'm tired.  Shattered.  Worn Out. Constantly.  Permanently.  It doesn't matter what time I go to bed.  It doesn't matter what time I get up.  Even if I have a little nap.  I'm tired.  I am more than tired, much more, I have fatigue.


Fatigue plays a huge part in MS; in fact almost everyone who has Multiple Sclerosis (MS) also has Fatigue.  Fatigue certainly plays a role in the MS of a large number of those living with the condition (according to the National Multiple Sclerosis Society (NMSS), around 80% of those diagnosed with the condition will experience fatigue at some point during the course of the disease).  Fatigue certainly plays a significant and crippling part in my MS.


Fatigue is an unimaginable exhaustion; but even the word exhaustion really is quite inadequate to explain how tired I actually feel.  It’s a debilitating symptom, a massively debilitating symptom of the disease that is not remedied at all by resting or by a little nap or even better quality of sleep.  And it isn't helped by the fact that the exact cause of MS-related fatigue remains unknown.


Some times I have a nap from which I can awaken dazed and confused and equally as tired as I was before I went to sleep.  Or I awaken not knowing if it is morning or evening, what day of the week it is, if I have been asleep for an hour or 24 hours.  And then I feel lazy.

I am not lazy.  People who know me, who have known me a long time will corroborate that I really am not lazy.  But that is how I feel.  I don't even have the energy some days to do the things that I enjoy doing, to do the things that I really really want to do.  I hate those days where my 'get up and go' 'got up and went'.


Fatigue is a 'hidden symptom' of MS.  It can be hard to understand.  It is difficult to explain.  It is difficult to understand that MS fatigue is very different to the tiredness and exhaustion that people experience as part of everyday life. 


Like everything with MS, the causes of fatigue can be complex.  Sometimes it can be linked to medication, sometimes to dehydration, sometimes to depression or anxiety.  So if you are feeling the effects of fatigue try and be a little bit kinder to yourself, and just try to accept that this is a cruel aspect of this cruel disease.

Friday, 28 March 2014

RIDE LONDON

On your bike.  Quite literary Patrick aka 'SHARKY' is going to be getting on his bike.  Getting on his bike to Ride London.  Ride London in support of MS-UK; to raise funds for and raise awareness of Multiple Sclerosis.

You may remember that I reported in my WEDDING BLOG, that "my fabulous friend the divine Ms. Amanda DEVINE eloped to Gretna Green after a fairly Whirl-Wind Romance to marry the love of her life, and he really is rather lovely, Mr. Patrick BOWDEN."

Well, Patrick as well as being lovely, is an athlete.  A tri-athlete none-the-less, and he is SUPER fit.  An 'Iron-Man'. Running.  Swimming.  Cycling.  Yes, Patrick does them all.  Patrick enjoys a challenge, (well yes, we know that, because he married Amanda!), but he has also signed up to 'Bike London' as part of the MS-UK team to raise both funds for and awareness of Multiple Sclerosis.  How lovely is that?  Thank You Patrick.  That really does mean a tremendous amount, that you would do that for me.  Thank You.

The inaugural Prudential RideLondon-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 a legacy 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 9 Augustand 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 let me 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 has been challenged to raise £800 for MS-UK.  Which is quite a big ask.  So, yes.  Here comes the big ask. We are looking for sponsorship.  Would you please consider sponsoring Patrick?  Patrick has set up a 'Just Giving' Sponsorship page at: http://www.justgiving.com/Patrick-Bowden2  It really would be hugely appreciated if you feel that you can sponsor Patrick and help us get him to his £800 target and perhaps even beyond.  Patrick has determinedly set himself the target at £1500.  Let's get him to his target.


The text code to donate by text is PBRL77 £3 then text that to 70070

THANK YOU in advance for your support and your generosity x

Friday, 21 March 2014

HAPPY

Thursday was 'International Day of Happiness'.  I met the girls for lunch on Thursday, two really lovely girls, and for that moment, sat eating, chatting, laughing, gossiping - I was happy.  I am lucky.  Very lucky.  To have such fabulous friends, who accept me for who I am.  Who love me 'just as I am'.

This made me think.  I had already been thinking about this.  I had been thinking about this quite a lot actually.  What is happy?  When is the last time that I felt happy?  Am I happy?  So, when is the last time that you felt happy?  Are you happy?  What makes us happy?

"Ask yourself whether you are happy and you cease to be so?"  This was the thinking of John Stuart MILL (the English Philosopher and Political Economist) who wrote about ideas such as Utilitarianism, Liberty, and Freedom of Speech.  In even asking the question 'are we happy' and analysing the answer, are we questioning our own happiness, and therefore reducing the probability that we actually are happy?  Do I deserve to be happy?  I do ask myself that.  I question that.  I question whether I deserve to be happy?  I question that all of the time.  This probably isn't healthy.  Everyone deserves to be happy.  Don't they?  To find their 'own kind of happy'.  I'm sure that happiness, what it is to be happy, means different things to different people.

And I mean 'Happy'.  Really 'Happy'. As opposed to 'Content'.  As opposed to 'Satisfied'.  As opposed to 'Pleased'. I mean HAPPY.




I think for me, happiness doesn't mean wealth and material possessions or fame or fortune.  For me happiness means loving and being loved.  They say that you can't buy happiness.  This I think is probably true.  I think that it probably true for me, for my kind of happiness.  They say that 'you can't buy happiness, but you can buy tea and that is kind of the same thing'.  There is certainly some truth in that too I think.


So what is it that makes me happy? Perhaps it is true that it is the simple pleasures in life that make us happy, that make me happy.  Bring us the most pleasure and the most happiness.  For me, it is probably a combination of the following things that make me happy. I've drawn up a little list:
♥ Time spent with friends
♥ Laughing / ♥ Talking / ♥ Sharing ideas
♥ Tea / ♥ Chocolate / ♥ Ice-Cream - i.e. the three major food groups
♥ Music
 A Good Book
♥ Sunshine
♥ Feeling Warm
♥ Good Health
 Benedict CUMBERBATCH

I think that happiness is probably linked to kindness and also linked to well-being; I think that there is probably an inextricable link between the three (Kindness, Happiness, Well-Being) (see my KINDNESS BLOG post from a few weeks ago).


I have MS.  So for me 'Good Health' is always going to be a struggle, so I shall try and concentrate on the other things on my list.  There is also probably a lot of truth in the statement that: "Nobody really cares if you are miserable, so you might as well be happy."  So, find what it is that makes you happy, and don't think too hard or too long about it; but find what it is or find who it is that make you happy, truly makes you happy, and do more of that.

Friday, 14 March 2014

CINEMA

One good thing about being 'disabled' (yes, focus on the positives... 'cos it is really quite shite actually) is that because I qualify for 'DLA' (Disability Living Allowance) I qualify for a 'CEA' (Cinema Exhibitors' Association) Card. So, this means that every day is like 'Orange Wednesday' for me, that is to say, I can get two for one (241); Buy One Get One Free (BOGOF) on all of my cinema ticket purchases.  If I buy a cinema ticket for myself and show my CEA Card, then I can take a career in with me for free.  They in return have to help me to get to my seat.  Details are available on the CEA website of how to download an application and apply ( http://www.ceacard.co.uk/ ).
It is official.  I am a cheap date.

So recently Robin, (aka May's Husband.  Anna's Dad.  Freya's Grandda.  Mr. PHILLIPS) took me to the Cinema.  Robin commented that this was the first time in c. 40 years that he'd been to the cinema with a woman that wasn't May, his wife!  Robin and I went to see 'The Railway Man'.
Staring Colin FIRTH.  I'm not sure it was quite what I expected, I'm not sure what I expected - it was perhaps more thought provoking than I had expected in that it made me think about what and how Erik LOMAX (played by Colin FIRTH) had seen and experienced what he had (captured by the Japanese, sent to a PoW Camp, forced to work on the Thai-Burma Railway, and tortured) but then he had to carry that, the psychological trauma, with him for the rest of his life.  Those experiences that he lived through as a young man, were forever with him.  I think it was that fact that really hit home.  I think that was/is true of anybody who has experienced war, it isn't something you can share, you do not want to share those experiences, apart from perhaps with the people who live it with you, and even people with the most brilliant empathy can never realise what those people experienced, continue to experience.  I suppose the film deals with the issues of torture, reconciliation and forgiveness - which was all quite humbling.


Thank You Robin for taking me.  Thank You May for lending me you husband.


Then I went to see '12 Years a Slave' with Janet.  I admit the fact that Benedict CUMBERBATCH is in it was a major factor in initially drawing my attention to the film. 

The film is concerned with the issue of Slavery which is an interesting, although difficult topic from a Sociological and Political perspective (and having studied Sociology and Politics as an Undergraduate at Sunderland University I was rather interested).  It is a powerful film.  It is definitely tough viewing.  It is the incredible and true story (based on a true story) of Solomon NORTHUP who was kidnapped and sold into slavery, and his fight for survival and freedom.  It is not for the faint hearted.  It is difficult to believe that this was actually a shockingly common phenomenon, to strip someone of their identity and sell them into slavery.  Janet has difficulty hearing and wears a hearing aid, so we went to the subtitle showing so that Janet would also be able to enjoy the film too.  We did both enjoy the film.  If 'enjoy' is the correct term to use.

Then my dear School friend, Rich MALC, we've known each other since we were c.12 years old, also took me to see '12 Years a Slave' (our first cinema trip together), which led Rich and I to a discussion about how unbelievably cruel human nature can be.  Perhaps we'll go and see a comedy next time.
I then went with May (without Robin) to see 'August: Osange County' (yes Benedict CUMBERBATCH is in that too).  May and I agreed: Not a 'cheerful' film!  It made us appreciate that perhaps our families are not that strange after all.

I then went with Maud to see 'The Book Thief'.  It made us cry.  It made us question the futility of War.  The shortness of life.  It made us appreciate the importance of friendship and the need for kindness.

So, a bit of a public service broadcast, but...  If you want to come with me to the Cinema, as my Career, then I am available for dates and taking bookings; so do get in touch and let me know when you need me to be free.  There are quite a few good films coming out, so if you are interested, and fancy a trip to the cinema, and want me as a date... just let me know.

Friday, 7 March 2014

DISABILITY

have MS.  I have a disability.
The medical dictionary says that disability is "any result of having a condition that limits what you can do". It is easy to recognize that everyday consequences of MS symptoms could be classed as disability (e.g. fatigue or chronic fatigue) and yet the public, i.e. most people, perhaps, look more for outward symbols of disability like walking sticks and wheelchairs.  This is not surprising, given the symbol of a wheelchair which is often used for disability.
In reality, three quarters of people with MS never use a wheelchair full time but they may have symptoms, including the more invisible ones like fatigue, which severely limit what they can do.  I know that I am severely limited in what I can do.  But, limitations are not always physical ones. MS can cause difficulties with slowed thinking, known as cognitive symptoms (brain fog), which may affect what someone can do.  It affects what I can do. The impact of Mental Illness such as Anxiety and/or Depression can also impact hugely upon a person's quality of life, and this really should not be understated.

The Equality Act defines disability as "a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities".  MS is automatically treated as a disability under the Equality Act.  This means that a person with MS is protected by the Act effectively from the point of diagnosis even though they may not see themselves as disabled at all.


But what does it mean to have MS?  What does it mean to carry the label 'disabled'?
As most of you that know me are aware, and as I have commented in my 'About Me' biography, I am struggling.  I am finding it difficult to come to terms with my 'disability'.  It is tough to re-adjust, to accommodate the changes; to accept that I am not the person that I was, or that I want to be - and to believe that the person that I am now is good enough.


I have mentioned before that I have had people comment: "Oh! You are really lucky; you've got a disabled parking badge."  To which I have to remind them that I was awarded a disabled parking badge because I am 'disabled', not because I am 'pretty'!


Living with MS I have learnt, and am still learning, to 'focus on the positive'.  To try to look at the things that I 'can do', rather than be defined by the things that I can't.  This isn't easy, there are days when it doesn't 'seem fair'; and I am right, it isn't fair; but with the support of my wonderful family and of REALLY great friends, a lovely MS Nurse, a splendid Neurologist and a truly fabulous GP - it is possible.  I don't want to be disabled, I want to be perfect.  But I am not.  This comes as something of a disappointment, and perhaps a shock!  I am not perfect. Who'd have thought?


I am however very fortunate that I have family and I have friends who accept my imperfections.  Who largely ignore what I am not able to do and focus on what I can do, and who make a huge effort to make me believe that I am, that I can, and to believe that the person I am is indeed good enough.