April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
The Beast from the East has arrived! I’m recovering from a relapse (MS for sh&t!) where my mobility has been challenged, I’ve fallen several times (last time at the cinema whilst moving to let someone pass, think I deserve an Oscar for my performance!) and experiencing tons of fatigue (if I got paid to sleep, I’d be rich) so my writing is on the back burner.
I was inspired to write about how the weather affects those like me. It’s been on my mind. I have thought how reduced energy levels and mobility doesn’t wash with this weather, how limited I am but more importantly how I have to think differently and be more prepared.
The weather presents many challenges. If you flick on the TV, there are shots of the level of snow, schools closed, difficulty travelling, travel disruption and forecasts for how long we are to expect this harsh winter weather. And it doesn’t help with a storm on the way. Many other countries experience snow. They are prepared. Ours grinds to a halt, although in its defence, this harsh weather is the worst I’ve seen for a while. Little man loves the white stuff. So here are my tips for handling bad weather for those in my boat, or anyone really.
You’ll probably stay in at home. For little man, I stock up on craft kits, board games, films for indoor fun ( I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man and it doesn’t drive me nuts) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines if you’ve not got any in. They usually have stories, colouring and sticker fun.
When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!) things to entertain little man, warm clothes and a blanket. We’ve been putting a little man’s blanket on the radiator to place on him during car journeys.
My mobility is bad and I’ve fallen a few times. The safest option is staying at home but it isn’t always viable. Slippy snow and ice isn’t great for anyone but when you have fallen and use a walking stick (doesn’t work well in snow!) this weather is super scary. I wear shoes I know that can help and am buying shoe grips.
Don’t put pressure on yourself
It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow before but not on this scale. I close my eyes and little man wakes me by shouting “kick a ball” or “go outside Mummy”. My husband says he’ll stick me on a sledge! (I’m thinking about weight restrictions!) It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. I’m saving energy for the weekend as my husband says he’ll be my chaperone. I’ve realised that asking for help is not a sign of weakness – so family and friends have had fun in the snow with little man, giving me a chance to recharge. I think they like it!
Protect your mind
Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot over the last few days because I want to be the one to play in the snow with little man. I will go out at the weekend with my husband around. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you (I organised a play date today), speaking to social media contacts ( I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days ( I’m thinking of summer holidays).
Be more hygge
In the interim, snuggle down, grab a blanket, hot chocolate and biscuits may not be great for the waist line but I’m still scoffing and watch films. Be like a Dane until the bad weather goes away.
Stay safe everyone! I’d love to know your tips?
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Every year we run our annual survey, asking you to tell us a bit about yourself. Last year hundreds of you took part – thank you!
We run this survey every year so that we can make sure we are always providing services that really meet the needs of people affected by multiple sclerosis, and so that we ensure we are reaching as many different people as possible that want information or support.
In the survey we’ll be asking questions all about you – from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won’t be asking you for any contact details at all.
Thank you so much for taking part!
Laura May, Marketing Manager
Hello, The Colchester Half Marathon will be taking place on Sunday 25 March and MS-UK has been chosen as one of the charities to benefit from the funds raised from the event! We are really excited to be part of the big day, and I would like to invite you to join us! You could volunteer to be a marshal, help us cheer our hearts out at our water station or come along to Weston Homes Community Stadium to greet runners with a smile and good luck before the race begins. It is a truly brilliant day, and cheering on #TeamPurple is really rewarding.
Ben, who volunteered with MS-UK at last year's Colchester Half Marathon, says... ‘I have been volunteering at events with MS-UK for a while, but Colchester Half Marathon is right on my doorstep so last year I joined the MS-UK team who set up at the water station at mile 11. The atmosphere was buzzing! The runners really need a final boost near the end of the race, and I felt really proud to be part of the MS-UK cheer squad who gave them that – many runners also gave us a round of applause, which was brilliant!’
So if you, your friends and family want be part of a day to remember please get in touch! You can email Catherine or call us on 01206 226500. Here's to another fantastic event on our doorstep! Jill Jill Purcell, Fundraising Manager
In her latest guest blog, Joanne discusses preparing for her son’s start at nursery and coping with a multiple sclerosis (MS) flare…
Little man has another development milestone coming up, going to nursery.
It doesn’t seems two minutes ago, he was putting his head up, sitting, then eating real food, walking then speaking.
Little man is only going to nursery for a couple of days but it’s a big step for him, an even bigger one for me.
He was going to start this month but due to illness (me mainly, we had bugs which take twice as long for me for them to shuffle off and also I’ve had a flare up, hence little writing, sorry). I wasn’t in the right place to start. It’s about little man settling in, but also as a new routine for him, l have to be ready too.
To prepare, we’ve been reading books about starting nursery (I’d recommend Spot and Pirate Pete). I’ve also been potty training (not a necessity).
I put a post on social media to see what may be useful. Everyone’s suggestions were helpful, recommending:
I saw a quote from Rosalind Dorlen, which said ‘handling chronic illness is about learning to live in balance’.
I remind myself of this. I thought I’d do lots before this milestone. The toughest part is beating yourself up about expectations. Learning to live in balance. Good days, you act like super woman, and on bad days, you feel like a rubbish mummy for not having any energy to do anything and switching CBeebies on again (a god send!)
Frustration kicks in. My flare up has caused me to fall a few times, my mobility rubbish, writing poor, fighting fatigue and generally feeling like what’s in the potty! As a mummy, I still have the same challenges but as a mummy with MS it is harder. Putting my needs ahead of little man’s and Daddy isn’t easy but a necessity. Getting the right support from family, friends, support groups and social media contacts all help. But I find it hard to ask or accept help. I know I need to do better!
I’m hoping nursery will be the right development milestone for little man, and also for me. Or at least my muse for writing.
I’d love to hear how you tackle development milestones (no chronic illness required).
Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.
Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”. He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel. Little did he know that just half a mile down the road from where he was living a stranger was watching - another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.
“I just wanted to see if I could help him see if things could be better,” she said.
Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland. Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.
“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.
Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.” “I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.” So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living. Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation. Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment. If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes. If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die. New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.
Issue 107 of New Pathways is out now, with the latest news, features and exclusive interviews from some of leading MS experts. So I thought I’d give you a roundup of what’s not to be missed.
In this edition I interviewed Jane Felstead, star of Channel 4 reality show Made in Chelsea. Jane had been experiencing symptoms for around two decades until recently when she finally demanded an answer from her doctor. Read her story and why she feels it’s so important to fight for a diagnosis on page 24.
MS can throw up a variety of symptoms on a daily basis, but how can general life events such as the menopause impact the condition? Turn to page 12 to find out more.
If you’re looking for a complementary therapy and haven’t tried reflexology, Lee Anthony Taylor, a worldwide authority and specialist in reflexology for MS discusses the benefits on page 14.
It’s a question we at MS-UK are asked a lot – ‘what is medical retirement?’ On page 42 our resident HR columnist Rebecca Armstrong explains what it is and how to make it work for you.
Plus, with all this talk about gut health in the news we provide an update on the latest development and how it affects you. Turn to page 18 for ‘The truth about gut health’.
New Pathways magazine is a paper magazine, but is also available in a variety of accessible formats including an audio CD, PDF and plain text – we even have an app (search My MS-UK), so if you would like to subscribe click here.
I hope you enjoy reading!
Over the next couple of weeks, people across the country will hear from Prudential RideLondon-Surrey 100 about whether or not they got a ballot place. I can just imagine the thousands of lucky people who will get a 'yes' and start planning their big day out in the capital.
But as over 80,000 people applied for a ballot place, there will also be some disappointment…but do not worry! You can still be part of the action as a member of the MS-UK team!
The Prudential RideLondon-Surrey 100 starts in Queen Elizabeth Olympic Park then follows closed roads through the city and Surrey before finishing on The Mall. On Sunday 29 July we’ll be heading to London to cheer on #TeamPurple, and that could include you!
Not only will you take on 100 miles, but you’ll be helping us support even more people affected by multiple sclerosis (MS). When someone calls the MS-UK Helpline to ask a question about managing bladder and bowel problems, your efforts mean we can pick up the phone. When someone reads an article about a complementary therapy in New Pathways that could help with fatigue, you could be the reason the magazine lands on their doormat.
Now, it must be time for the song…
Jenny Poulter, Events Fundraiser
In February 2018, there will be a 2 day Switch2Move workshop in London. Open to any Movement Practitioner and Care facilitator, such as gym teachers, dancers, art-therapists, managers in Healthcare, etc. this workshop will offer tools and guidance to encourage novice learners to discover new realms through creative movement. The workshop will be led by Andrew Greenwood, who cofounded the organisation Dance for Health and created education programs specialised for people with conditions such as multiple sclerosis and Parkinson’s.
There will be a free open demo class on the Sunday morning and Andrew would love if any people with multiple sclerosis or other mobility challenges could attend!
If you'd like to take part in this you need to arrive by 10am, and wear comfortable clothes and shoes. This open demo class is free of charge, and you can take someone along with you. It will last up to an hour and half, which includes some time for feedback. Andrew's main aim is to communicate to wider society and especially to the medical world that dance can be a source of health and wellbeing. You can find out more on the Switch2Move website now.