Throughout 2016 our Virtual Insights Panellists have been instrumental in setting the course for MS-UK. Each month they have given us their views on a different project. This has proven invaluable to us and has helped us to ensure we are providing people affected by MS with not only what they want, but how they want it.
Projects have varied from providing input for our newly diagnosed booklet, and a number of Choices leaflets, to helping us with a marketing campaign for World MS Day and giving us feedback to improve our e-newsletters.
For the most recent project we asked our VIP what our new national service should be – with an overwhelming majority, they chose counselling – so watch this space in 2017…
Thanks to the generosity of our VIP’s in volunteering both their time and their MS-related insights, we are able to ensure we remain a charity that listens to people affected by MS and use their voices to inform our work.
Sign up to join our VIP today and help us in our work to empower people affected by MS to make the most of today and live life to the full.
And to everyone who has had a say in our work in 2016 through being part of this community, thank you!
Last month we introduced the first of a series of guest blogs from Robert Munns. Robert is involved with the Oceans of Hope Challenge, which is an adventure like no other for people affected by multiple sclerosis. In this series, Robert will take us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others. So, time for the next instalment…
So following my first blog for MS-UK, I want to continue from where I left off really.
I’d been given the opportunity, quite soon after diagnosis to go back to work for an old employer. An employer who was sympathetic to my one sided battle. The battle where MS had won round one. This battle that appeared suddenly from nowhere and hit me in the prime of my life. It scared the living day lights out of me and genuinely locked all doors and sealed all the windows from a normal life that I was very much used to.
This job was as a skipper on board a small motor yacht called ‘Big Smile’. I’d been doing this since 2005 for the same owners. I felt safe and secure with them and they with me. I was confident and happy in living a truly blissful existence, floating around on some of the most beautiful waters in the Mediterranean.
As discussed in my previous blog, it came as a heaven sent coincidence to be asked back in 2009. And for whatever my reasons, I jumped at the chance at this normality again.
I arrived very early in the season, to get the boat ready from the winter layover. This was in a place called Gocek in Turkey (a place that is still very much dear to my heart). I felt slightly out of practice and daunted by the prospect of the challenge of clearing up all the previous skippers mess that he had left.
What helped me was that I was in such a magical country.
I arrived in this small town very late in the evening. It was very warm and the call to prayer that was being broadcast across the town made me feel that I was definitely in another continent, let alone another country.
Being so far away from home and all of a sudden on my own was both difficult and freeing at the same time.
I sat on the boat with mixed feelings of inadequacy, dread and a little excitement. I did not sleep that night, thoughts would creep up on me and fill my mind with questions such as “what are you doing here?” or “can you REALLY do this anymore?” and “what happens when you have another attack?”
The next day, not through logic, but just by putting my fears to one side, I just got on with it. I could do the work physically, I felt that I didn’t have the mental strength to complete such a large task.
Getting a boat out of winter storage involves a lot of different types of work. Some of it requires engineers, outside help and a lot of perseverance on my part. Cleaning the boat from top to toe, inside and out. Finding things that do or don’t work, finding the problem and somehow getting it fixed.
It had been three seasons since I’d done this, but knowing that I was trusted to do this and I had enough time to do it all really helped my ability to just plod on and do it.
At this stage however, every hour and every day the fear and uncertainty kept reminding me of what could happen. Like a big black dog sitting in the corner, casting a shadow over the room and my thoughts.
With all this hanging over me, I still could not discount the hugely positive chance that I had. Taking a great boat to some beautiful places and experiencing some amazing sunrises and sunsets.
The physical activity of course helped a great deal. Having the best swimming pool on your doorstep every morning helped a great deal. Maybe running through some magnificent scenery did a lot to fend off negativity. Eating healthily and heartedly gave me some energy that was sadly lacking.
Having the sunshine and warmth with me all the time helped. Sometimes it was too hot for the black dog who would go down inside and hide from me. I started to realise when this happened and how it affected me. Sometimes I didn’t manage the highs very well, but it was great to experience comfort, a smile without worry or just enjoying the fact that you just laughed uncontrollably. To realise that I could still laugh was very reassuring.
After such a positive experience. A summer of certainty and exploration, I’ve been battling the black dog that sits with me.
Looking back on it, I did not yet realise fully how much of an influence it was on me. It still had too much of a hold over my everyday life. Retrospectively it still had to be tamed.
Next time, I’ll be looking back at how much it needed to be tamed.
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!
Following on from the success of last year’s fabulous Festive Lunch, the Social Group will be holding another one this year, on 07 December at Marks Tey Hotel.
Please do join us! Places are limited, so speak to a member of staff at Josephs Court to book your place today!
The Josephs Court coffee morning happens on the second Tuesday of every month from 11am. You can join in any time, just come along for a cuppa!
Venue: The Berechurch Arms, 177 Shrub End Road, Colchester CO3 4RG
It is fully wheelchair accessible and there’s plenty of parking too!
So…it’s time to meet Martin!
Martin Hopkins joined us as an MS-UK Trustee in 2008, and acts as our Chair of the Board. Martin and his wife Rachel have three children, Polly, Alexander and Rowan, and live with a working cocker spaniel called Ruby!
‘I joined the Board of MS-UK for two main reasons. Firstly I wanted to be involved in helping a local charity and using my skills developed in my work to help.
‘Secondly one of my best friends was diagnosed with MS and having seen him deal with the shock of that I felt fairly helpless in terms of the practical support I could offer. I thought therefore that becoming involved with MS-UK would be a way of providing support.’
In his spare time Martin plays the tenor saxophone for fun and runs for fitness and relaxation. His greatest achievement is running 12 Virgin Money London Marathon, ten of them in a row!
In the next issue of New Pathways (which is out on 01 December) we will be introducing all of our Trustees to you, so subscribe today or search for My MS-UK on your app store to get the digital version!
Our M&S back pack was such a success last year that I’ve had no choice but to organise one again and keep the festive fun going for another year!
With help from our lovely volunteers and the amazing shoppers of M&S we managed to raise over £1200 in a weekend!
This year we will be holding the bag pack at the Colchester M&S store on Saturday 10 and Sunday 11 December.
We love going out into the community and meeting such fabulous people. Last year I remember speaking to loads of different people who actually enjoyed watching me pack their shopping bag, even if I didn’t…! All the volunteers seemed to get the hang of packing quicker than I did and they all had a great time!
This bag packing weekend in December could not run without our special volunteersand again I am looking for some more sparkling volunteers to help out on both Saturday afternoon and Sunday to make the day run as smoothly as possible. Even if you can only spare a couple of hours that would be fantastic as the more volunteers we get, the more bags we can pack and help the M&S customers to enjoy their shopping even more!
To find out what times are available please contact me. I am looking forward once again to the weekend and I hope you are too!
Your bag packing king!
Trustees are the people in charge of a charity. They help to make the UK the sixth most giving country in the world. They play a vital role, volunteering their time and working together to make important decisions about the charity’s work. Trustees’ Week is an annual event to showcase the great work that trustees do and highlight opportunities for people from all walks of life to get involved and make a difference.
‘Stronger charities through good leadership’
Trustees’ Week 2016 celebrates the UK’s 1 million trustees and promotes the benefits of volunteering to be a trustee. Independent research shows that the UK is number 6 in the world for giving and volunteering and trustees play a vital role in making our charity sector so vibrant and strong. This year Trustees’ Week will focus on good governance and the skills needed to make trustees effective leaders.
At MS-UK, we would like to say a massive thank you to our amazing Trustees – they make our work possible and bring expertise to the table – we couldn’t do it without you!
You may remember the article MS-UK did about the European Dance & Creative Wellness Foundation in New Pathways magazine back in the Summer. Well, the Netherlands success story is now coming to the UK!
‘Take off your specialist hat and put on your dancing shoes’. That’s the invitation for a two day sharing that will be held at Friday 02 December (Sadler’s Wells) and Saturday 03 December (Rambert).
Health professionals, including those who support people affected by multiple sclerosis, are invited to attend and discover different perspectives on dance for creative wellness from the UK and across Europe. The workshops promise to give inspiration for therapists, practitioners, carers, health care providers as well as dancers, teachers and those interested in integrating dance and creativity in well being and preventative health practice.
Presented by Sadler’s Wells and Rambert in partnership with the European Dance & Creative Wellness Foundation, tickets are now on sale and available from £ 55.
MS-UK will be popping along too, so hopefully see some of you there!
Director, Dance & Creative Wellness
As well as answering the day to day calls, emails and web chats, the Helpline are busy reviewing our range of Choices leaflets.
Please take our quick survey today to help us support other people affected by MS.
We have just added some new documents to our website, and we really hope you find them useful!
The first is a ‘Symptom diary’. Whether you have MS or are in the early stages of gaining a diagnosis, it can be useful to keep track of your symptoms. Keeping a regular symptom diary may help you to spot any patterns, keep note of any triggers and may be useful for when you have meetings with your health professionals.
The second is the form ‘Am I having a relapse?’ It contains information about what the clinical criteria for diagnosing a relapse is. It also includes a chart for completing that may help you identify any external factors that may be influencing your health and a version of our symptom diary for recording symptoms that have occurred during your potential relapse.
We hope you find these useful, and remember we’re here to chat if you want to discuss anything at all,
The Helpline Team