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Guest Blog - The luck of the draw

Posted on: May 10 2016

Today we publish one of our ‘Guest Blog’ articles from Liz. If you would like to write an article for our blog please contact john@ms-uk.org.

You can view the guidelines for writing for us online now at www.ms-uk.org/ourblog.


As I am sure you aware, World MS Day is less than 17 days away.

Is this a good thing?…

Well, one of the ‘kind of’ less good ASPECTS of our condition is that it seems to be pretty much non ‘picky’ re: ‘target’/ sufferer, that is to say that membership of our MS ‘club’ is limited to /by neither:

• Sexuality;
• Nationality;
• Political preference;
• Sexual persuasion:
• Academic qualification level; or any other ‘entry’ requirement .

That I have MS, while nobody else in my (growing) immediate family [sisters (3), Aunt[s] (2), sons (2) cousins (5), nephew(1) ] has shown any identifiable indicator of the same, I see that, you may or may not?: (it’s not my business, and anyway, how could I ?) as little more than ‘the luck of the draw’!

My own MS journey began a very long time 41, out of my 48years ago and I’m pretty sure you have your own. It may have been when I was in London, following graduation, I experienced the unusual ‘symptom’ of total blindness, in one eye only…not painful, not totally debilitating, but that’s what happened…I crossed several tube lines and ventured to work, as usual.

Quick trip to local doctor (GP) who to my surprise booked me a clinic appointment with an ophthalmologist at St Thomas’ Hospital.

After several minutes, musing quietly, my opthalmologist offered, somewhat apologetically…’well Miss M, I think I may have a diagnosis for you…may I ask? Do you know anything of Multiple Sclerosis?’

Yes, I knew a little, that is to say that I knew my fantastically devoted mother took my 3 sisters and I to see her Aunt, 3 or 4 times a year. (Great) Auntie J was afflicted by the condition.

Beyond my own, probably boring, recollections of my first experiences our condition, there are still, after 4+ years, only a few things I’m pretty certain of: facts…

• It (MS) is a chronic condition affecting the brain and central nervous system (CNS);
• The process of confirming a diagnosis of MS is neither quick, nor easy;
• No 2 MS-ers share identical ‘symptoms’ at the same time.

As time passes by, and visits to my neurologist(s) come around, the international and 24/7 communication facilitated by my, and probably your, interaction(s) with, possibly you, and still all MS-ers globally of the fund-raising projects taking place, and supported by :
• The MS Association of America;
• Associanciazione Italiana Scleriosi Multipla (Italy);
• Esclerosis Multiple Espana (Spain);
• The MS Society (UK);
• Multiple Sclerosis Society of Canada;
• National Multiple Sclerosis Society (USA); and
• Sclerose foreningen (Denmark);

To answer my initial question, as I type there are still 17 days until we celebrate WORLD MS DAY 2016!!

My guess is, no, make that I know with absolute certainty that, by the time you have finished enjoying this edition of the MS-UK blog, we are at least 2 hours closer to celebrating the recognised and prescribe-able cure, not therapy to help management of, but cure for Multiple Sclerosis!!!

If you would like to be kept abreast of the first updates, of what’s going on around the world to mark the day, we are all encouraged to contact Sophie Paterson: sophie@msif.org ….it’s up to us.

Look forward, together positively, together….that way we are all stronger!

Keep going forward friends.

Liz

A message from the Social Group...

Posted on: May 09 2016

At our centre in Essex, Josephs Court, our clients have been busy getting organised, and have created a Social Group! If you live in Essex you can come along and join the fun!


Hi I’m Keith from the Social Group!

On Tuesday 12 April we held our first coffee morning at King’s Café in Stanway, Colchester. About 20 people turned up including those with MS, carers, friends and family and gave us all the chance to meet new friends and chat over a cuppa.

A member of the group even got approached by a lady in the cafe who is affected by MS and was interested in meeting others in the same situation as her. After a chat she was most interested in learning about MS-UK, and will be coming along to our next gathering.

Most of us stayed for lunch and finally got away after 4 hours of laughter and putting the world to rights. Everyone gave positive feedback on a much needed get together, and it was mentioned that any bright ideas for future events could be put into the suggestion box in Josephs Court.

Overall it was a successful get together and has brought fellow MSers closer together, giving them the confidence to mix with people with a similar condition and know that there are groups and charities out there offering help.

King’s Café proved to be a great venue, easily accessible and with plenty of space. The staff were very friendly and helpful, and the menu reasonably priced. We have decided to return there for our next coffee morning and would like to invite you all to join us – the more the merrier….and laughter really is the best medicine!

Next coffee morning will be held on Thursday 12 May…

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Also this month, we have been discussing ideas for a summer get together for friends and family. Plans are currently in the pipeline for a Family Barbecue to be held in August. We will share updates in the Josephs Court e-newsletter, which goes to all of the clients at Josephs Court each month.

As always, we’d love to hear any of your suggestions for enjoyable activities that can help us all make the most of today and live life to the full! Please put your ideas in the suggestion box at Josephs Court.

Best Wishes

Your Social Group

Making sure the team at MS-UK is as accessible to you as possible!

Posted on: May 09 2016


Ryan Jones from the MS-UK Helpline team shares what he does with MS-UK in this blog post…


I love working for MS-UK. The organisation really is doing all it can to make sure people affected by MS can reach out to MS-UK in whatever way is right for them.

There are so many ways you can gain support by contacting the MS-UK Helpline team; post, email, freephone Helpline (including our telephone translation service) and via the instant messenger service ‘webchat’.

The webchat service is a really useful way of getting in touch. You can be connected to an MS Advisor from wherever you are in the world in an instant and begin chatting. One of the great elements of this is that you can connect via any kind of internet enabled electronic device ranging from your computer at work, your tablet at home through to using your smart phone outside a café!

It’s important to add that the webchat service can be used no matter where you are in the world. We have been contacted by someone with MS in the USA who for them it was the early hours of the morning and they had been having issues sleeping and just wanted to talk to someone who had an understanding of MS.

Webchat is also really useful for people that want some emotional support, but just can’t face picking up the phone. It’s a great way of connecting to a trained advisor instantaneously, communicating with someone who understands MS, and getting the help that is right for them there and then.

So far this year the Helpline team have supported more than 50 people using webchat, talking about a wide variety of subjects including, diagnosisbeing newly diagnosedsymptomscannabissuspected MSDisease Modifying Therapies, MS progressing and changing mobility needs. There really are no taboo subjects with our Helpline team. If it is important to you, we will happily discuss it.

If you think that webchat sounds like a useful service, please do drop us a line and say hi! We’re here if you need us.

MS is not an identity…

Posted on: May 05 2016

In this guest blog by Dominic Shadbolt, you can read about his views on living with multiple sclerosis. Everyone faces things differently, and there is no right or wrong way to live your life with MS, so a big thank you to Dom for sharing his views here. Please do comment in the box below, we would love to know what you think too…


Here’s a thought; some us don’t want to define our identity to others with the lead of, “I’ve got MS”.

I have had it 20 years and I tire of the, “Hello, I’m so and so and I have MS”. Why should we be defined by our condition?

I believe there is more value in acknowledging it – like cancer or other usually hidden but chronic conditions – for certain, but encouraging people to be the most they can be as the people they are. Those of us with MS are not as some ‘special’ segment of society that needs special sympathy correspondent with the leading identifier of “this is me AND I have MS”.

Personally, I want to know the person, not their condition.

We can’t all be lumped together in some homogeneous pot of MS sufferers.

I’ll dismount from my soapbox now!

Best,

Dom


Need support?

The MS-UK Helpline is here if you need to chat about anything at all.

Live web chat with the MS-UK Helpline team

Thank you for supporting MS Awareness Week!

Posted on: May 04 2016

Hi everyone,

I just wanted to say a massive thank you for supporting my #SmileswithMyles campaign during MS Awareness Week 2016 – you guys make it all worthwhile!

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We had a great week celebrating and spreading a positive message about living life to the full with multiple sclerosis. Over 300 people supported our Twibbon idea – thank you!

Lots of you also followed me on Instagram, which is great to see – if you forgot, you can find me on Instagram today!

Next in the diary is World MS Day on 25 May, so remember to sign up to the MS-UK monthly e-newsletter this week so you get all the details in plenty of time!

Myles

MS-UK Mascot

Simon's marathon story...

Posted on: May 03 2016

Wow what a day it was in London!

What nobody tells you is that by the time you have walked to the train station, caught the train to Greenwich, done the 1/2 mile or so walk to Greenwich Park, found the lorry to leave your personal belongings on, gone for a last minute comfort break (didn’t work as I needed to go again 2 miles into the race!), found your starting pen and then stood around for 1/2 an hour waiting for the off you feel like a sit down before you’ve even started.

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Then the race begins.  7 minutes later, I made it to the start line and at 10.07, away I went. People give you advice about not setting off too quickly and pacing yourself but the reality of the situation is you are swept along in a huge wave of runners being careful not to trip the person in front or be trampled on by the person behind.

As I ran through Greenwich, I was amazed by the number of people watching, children at the side of the road wanting to be high fived, people who had set up sound systems in their bedrooms with a microphone shouting encouragement and blasting music from their windows.

Before long I had made it to my favourite part of the course, the Cutty Sark, where you are met by a wall of noise from cheering supporters, bands, and music blasting out from all directions. Then it was time to try and make it over to the right hand side of the road where I knew my family were waiting to cheer me on at mile 7 – a quick high five with my children and on I plodded.

I felt fantastic and enjoyed the occasion for most of the way round. I was extremely emotional at mile 17 where there was a MS-UK cheering point. Thoughts turned to my brother and other sufferers of MS – such a cruel disease – and to gratitude to all the supporters who had turned out to cheer everybody on and the generosity of family, friends and well wishers who had helped raise funds for this worthy cause.

I was going great guns until mile 22 when I think I must have hit the dreaded wall. Everything started hurting and I knew it would just be a mental battle to get across the finish line. The crowds were huge and loud coming up the embankment towards the Houses of Parliament but I could not appreciate it the same here. I just wanted to get to the finish line. 4 hours 4 minutes after starting, I crossed the line – I had done it.

It was then off to the reception hosted by MS-UK where each and every single runner received a hero’s welcome.

My overriding feeling from the day was not one of any personal satisfaction for achieving my goal but simply of being part of such a wonderful event. Over 39,000 people took part and millions lined the streets of London, all with the aim of raising money for good causes – it is a great and compassionate country we live in!

The incredible generosity of my supporters has now reached an amazing amount of £33,000 inclusive of gift aid with donations still coming in via my giving page – check it out online now.

Back to the Monarch Airbus A321 this week flying passengers to Gran Canaria and Agadir from Manchester Airport!

Simon

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