Mindfulness is a bit of a buzzword and that is for good reason. With practice, mindfulness can change the way our brains work and instill a sense of calm. Far from its roots in traditional Buddhist practice, mindfulness of today is about taking your focus out from the past which we can’t change and the future which is yet to happen and putting it firmly in the present. This can be done in a number of ways from focusing on the body to the external senses.
Forgive others and ourselves
Holding on to grudges and past hurts has been likened to ‘putting your hand into a fire but expecting it to burn the other person’. It might feel like the right thing to do, but what does it really accomplish? Forgiveness is surprisingly seldom about the other person but about the feelings and beliefs that we carry with us from the precipitating event. Forgiveness is a private decision and it is not necessary to tell the other person that we have forgiven them. Of course, forgiveness of the self is just as important, as feelings of shame can be overwhelming, we are human after all and everyone makes mistakes.
Use positive affirmations
It’s easy to fall into a rut of negative talk, but by changing the wording it can have a transformative effect on how we feel about ourselves. Remember that coach from school or any other supportive and encouraging role model you have had the joy of spending time with? Be your own cheerleader – ‘you can do it, you are worthy and you are loveable’.
Set small goals and complete them
By setting ourselves small achievable goals throughout the week we can begin to see that we can do the things we set our minds to. Whether it is finishing that book, learning to crochet, phoning an old friend or putting time aside for self-care, it shows ourselves and others that we care for and value ourselves.
Keep a gratefulness journal
Log three things you are grateful for every other day, they don’t have to be big things. A smile from the lady in the newsagents, a bird on the windowsill or simply an hour of your favourite TV show. By feeling and acknowledging the small moments in our life that we often take for granted, we can start to build a more accurate model of what our life is really like rather than focusing on the negative parts.
Last week, MS-UK Counsellor Louise Willis looked at what self-esteem is, this week she will look at how we can help to build a healthy level of self-esteem
Stop negative self-talk
We have all done this, whether it’s how we speak to ourselves when we make a mistake or our general internal narrative. When we talk to ourselves in a negative way we have no filter to say ‘hey, that is not true’ or even to question it as we may to a friend if they were to say it. Would you expect someone who is being spoken to negatively to have high self-esteem?
Step up the self-care
You are a valid and unique person like everyone else. Treat yourself with the respect you need and others will too. Spending time doing your favourite hobby, getting a massage, reading a good book, enjoying time outside or a long relaxing bath are all ways to show ourselves that we care.
Being assertive is not about taking control or being aggressive or forceful, but about kindly and calmly stating your needs or wants with respect to both yourself and others. Assertive communication uses ‘I’ statements as a way of owning thoughts and feelings and always calmly listening to and acknowledging the other person. Practicing saying ‘No’, planning conversations in advance and offering alternatives is also helpful in assertive communication.
Develop healthy boundaries
Having stable and reliable boundaries affords us and others the security to know where we stand in relationships. For those with low self-esteem, boundaries can often be weak and the more we allow others to cross them, the more out of control we can feel. Developing boundaries is not only healthy for us but is essential for healthy relationships.
Challenge negative beliefs
We can often adopt negative ‘core’ beliefs about ourselves. These can rear their ugly heads in times of hardship and illness. When challenged, these beliefs are rarely true but because they have been there since early life, we often don’t even realise we have them. When we view our life through the lens of a negative belief, we will see mostly negative outcomes. Happily, these beliefs can be challenged and changed for new, more helpful ones which in turn will begin to build self-esteem.
Check back on the MS-UK blog next Thursday to read the final instalment of this three-part blog series. Click here to read the first instalment if you missed it.
This week the UK is set to see soaring temperatures, with most places reaching temperatures between 34-35 degrees according to The Met Office. They have also reported that the South East of England could see it rise to an immense 37 degrees. Whilst some may bask in the fact that we’d normally have to pay to experience such hot weather outside of the UK, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity, which is why we are going to give you some top tips on how to keep cool in this weather…
1 ) Wear weather appropriate clothes
Whilst wearing shorts or loose clothing are apparent ways of keeping cool, changing your choice of footwear is a good way to go too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Switching to some appropriate sandals can help your feet breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler. Although your own body heat will heat up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler.
4) Unplug electrical plugs that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time.
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
On Friday morning I set off to the University of Warwick to attend the annual MS National Therapy Centre Conference.
MS National Therapy Centres (MSNTC) is a charity which represents individual therapy centres across England, Scotland, Wales, Ireland, the Channel Islands and Gibraltar. These centres provide treatments, therapies, help and support to some 15,000 peop
le living with multiple sclerosis (MS) every week.
The annual conference and AGM is a chance for therapy centres to come together, share best practice and learn from each other. The conference, which was hosted by Frank Sudlow, Chair of the charity, ran over two days and included workshops, speakers and lots of updates about the world of MS.
I was particularly keen to hear Dr Dawn Langdon speak about cognition and MS and I wasn’t disappointed. Dr Langdon is Professor of Neuropsychology at Royal Holloway University of London. Her talk included an update on what research is being carried out to discover the impact of cognition difficulties for people living with MS as well as some useful insights about how people can improve their cognition by stretching their brains. It gave me a lot of food for thought!
The conference was also a chance for me to meet up with other CEOs from the national charities… David from the MS Trust and Nick from the MS Society. It was great to be able to talk to them about their work and how they are supporting people affected by MS as well as updating them on what MS-UK is doing. I hope that we can work together in the future to reach even more people and let them know we are all here to help in any way we can.
I wanted to say a big thank you to the MS National Therapy Centres for inviting us – see you next year!
Amy Woolf, CEO
In 2013 my lovely mother got diagnosed with multiple sclerosis (MS). When we got the news of course we were devastated, not knowing much about the condition apart from the fact it was “incurable “ through medication and put her in a lot of pain, we just all did what we could to support her but for years I have felt helpless. She decided not to tell anyone but her close friends and family of the condition she was living with...why you ask?
My mum is one of the most strong, independent, driven and successful women you will ever come across. In 1999 she was awarded the Ernst & Young trophy winning Young Entrepreneur of the Year. From 1992 - 2012 she owned a very successful business expanding world wide in over twenty countries and for years she was on the panel of the DSA and was well respected in the industry she was in. Sadly, I believe because of all of this she put pressure on herself to portray this strong business women, I think she thought people would take pity on her or think she couldn’t get the job done if she came clean that she had MS. So instead she suffered in silence, for a few years she was CEO of a large network marketing business which was an extremely high pressured job and to get her through the pain day to day she would take morphine based pills which again is something none of her colleagues knew about.
In 2017 my mother found herself heading up Europe for one of the largest essential oils company in the world doTERRA, here again she would be working 70 hour weeks, another high pressured role but this time she would be taking over 100 flights a year around Europe. Anyone that has MS will know that one of the biggest struggles is tiredness, so it won’t come as a shock to you when I tell you that she was exhausted. But this time something was different, as she was now part of this essential oil business she discovered natural medicine and in time found the perfect essential oils to support her immune system and pain relief and now to this day is morphine free.
In June 2018, even though my mum was at her healthiest, her strongest, pain free and our “happy mum”, I still felt I needed to do something to help her and others with MS and also families that have lost loved ones through MS. I took the plunge and decided to apply to run the Virgin Money London Marathon 2019 to raise money for MS-UK. They help people and families through some of the darkest times. This journey has been incredible - I have not just been able to raise over £2,000 but I have also learnt so much about myself too, I feel so proud to be a part of it all and to have run for such a good cause with an amazing charity.
Last month my mum told me that I had given her the strength to tell the world what she had been hiding for years, she told her colleagues and thousands of people who work alongside her, friends she had not seen for years that she has had MS for over 6 years. People where stunned, some sad, some happy because her story had also helped them, but most of all no one took pity on her!
So my 'WHY' is my mum, I ran for her, for the strength she has shown, for never giving up, for still pursuing her career even though at times it was nearly impossible to get out of bed let alone run a business, for now helping so many other people with MS find a natural solution that works with them, for having the strength to tell everyone that she will fight and lastly for being the best mum I could wish for!
Applications are now open for MS-UK #TeamPurple places in the Virgin Money London Marathon 2020!
MS-UK’s Helpline team recently worked with MS-UK’s wellness centre Josephs Court in Essex to run an information session relating to services and support organisations working with people in its local community.
The session was well-received with one attendee saying: ‘I enjoyed the variety of different topics and the speakers. It was informative and gave us the opportunity to meet new people and share experiences.’
The MS-UK Helpline and Josephs Court teams worked together to bring in a range of guest speakers from a variety of organisations to give short presentations on their services, the support they provide and how they can help people with a disability.
The first speaker was Lesley Bysouth, Head of Communications for Motability. Lesley spoke about the fact that since it was set up in 1977, the Motability Scheme has provided over 4.5 million vehicles and has helped millions of disabled people and their families to enjoy the ‘road to freedom’. She let us know that last year they awarded more than 8,000 grants for wheelchair accessible vehicles, driving lessons for disabled people, advance payments for leased vehicles, adaptations, powerchairs and mobility scooters.
To join the Motability scheme, a person must be in receipt of the following benefits:
• Higher Rate Mobility Component of the Disability Living Allowance (DLA)
• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP)
• War Pensioners’ Mobility Supplement (WPMS)
• Armed Forces Independence Payment (AFIP)
An individual interested in joining the scheme will need to have at least 12 months remaining of their allowance when they apply.
Click here to find out more information about how the Motability scheme works.
Next, we heard from John, a volunteer for Age UK Essex. John spoke passionately about his volunteering role and then spoke about the range of services the local charity has on offer for the over 50s. It was impressive to hear about the full range of services the local charity has to offer. They deliver information and advice, befriending, home help and much more.
Age UK Essex is a charity in its own right but is affiliated to the national organisation Age UK. Age UK has a range of detailed factsheets, a helpline and other services and they support and work with many other local Age UK charities. To find out what is in your area and the support they provide click on this link. You may well find that your local Age UK gives a wide range of options from practical help with welfare benefits and handyman services through to emotional support such as befriending and companionship support.
We then heard from Georgina Delves an Assistant Engagement Officer with Community 360, a Community and Voluntary Services hub organisation working across Colchester, Braintree (with some services in Tendring too!).
Georgina talked about the support the organisation gives to charities and third sector organisations and the services that they directly deliver such as community transport schemes and Shopmobility. Then Georgina let us know about the ‘My Social Prescription’ scheme, this exciting project helps people with a social need connect with local and appropriate community groups, clubs, peer networks and much more. Their skilled and knowledgeable team will help people map out the resources that are in the community and helps people find the right service, in the right place, the first time.
The Kings Fund has written about social prescribing and how it is being adopted up and down the country. There may well be a service in your area. If this is of interest to you, it is likely that either your GP practice or your local Community Voluntary Services hub will know.
After a cup of tea and a biscuit (or two!), we heard from Yvonne and Rosie from Carers First. Carers First is a large organisation working with and for unpaid/family carers across Kent, Essex, Lincolnshire, and some London boroughs. Yvonne and Rosie told us about the local services the organisation delivers and also talked about the rights that unpaid or family carers have to a carers assessment as well as rights in employment. It is almost certain that there will be a carer support organisation working in the area in which you live. Your local council will have information on how to get in contact with them if you are not already.
The next organisation we heard from was from a housing and support organisation that provides floating support or community outreach services. Peabody’s outreach support is a service that will work with people with a ‘housing-related need’ on a short term basis. The service is there for anyone in Essex over the age of 16 who needs support, guidance or advice. They can work with anyone regardless of their housing status, for example currently homeless, living in local authority homes, privately rented properties, as a housing association tenant or an owner or occupier. They can give help to resolve benefit and debt issues, help with problem neighbours, support people to gain skills to live independently and help people feel more confident.
Floating support or housing related outreach services are fairly common up and down the UK, some local authorities only fund it for certain groups of people (for instance people that are homeless or who are under 25 and have a housing need). If you want help to find a similar service in your area. Feel free to contact our MS-UK’s Helpline team and we will happily see if we can help find a relevant service.
The services and groups covered in our information session are just a snapshot of some of the services and support organisations working across the local area to Josephs Court.
Ryan, a Helpline and Information Officer with MS-UK’s Helpline then spoke about ‘filling some of the gaps’ and let the attendees know about just some of the other local options for getting help:
We are sure that there are other services, organisations and volunteer-led groups out in your community, up and down the country and often across the whole UK doing great work and giving the help that you and others need.
If there’s an organisation that you value that you think we should know about, please do get in touch on 0800 783 0518 or email us on email@example.com.
This week is national Volunteers' Week and we are celebrating by saying a big thank you to our amazing volunteers. Last year over 130 people volunteered with MS-UK in all sorts of ways. Together you donated 500 hours of time to MS-UK and helped us be here for people affected by multiple sclerosis (MS). We literally couldn't do it without you, thank you!
This year we have lots of opportunities to get involved. You could join our fantastic cheer squad and support our fundraisers to make it over the finish line at a national event. Or you could come into our offices in Essex and get stuck in behind the scenes. We are also currently looking for volunteer counsellors to help us offer telephone counselling to more people who may need it across the UK.
Whatever you decide to do, we'll be here every step of the way to support you. You can share your skills and develop new ones, gain some experience working with a national charity and we provide you with a full induction and ongoing support.
In the mean time, you can find out more about Volunteers' Week across the country on the NCVO website. If you already support MS-UK, don't forget to download our Twibbon to show the world you are part of #TeamPurple.
Best wishes and happy volunteering!
Sarah Wright, General Manager
MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:
Friday 24 May - open from 9am - 5pm
Monday 27 May - closed
Thank you all and do have a lovely bank holiday!
Best wishes, The MS-UK team
On Sunday March 23, more than four thousand people took to the streets of Colchester to be part of the towns’ biggest community sporting event the year, the Colchester Half Marathon.
The event is organised by a group of volunteers from Colchester Colne Round Table who work tirelessly throughout the year to stage this fantastic event. All the proceeds from the race are shared between local charities.
This year MS-UK were lucky enough to have been chosen as the main charity beneficiary for the event. Brain injury charity Headway Essex were the other charity partners. MS-UK worked closely with the organisers and recruited a team of over 100 volunteers and 50 runners to support the event.
Taking on a half marathon is brave enough, but not enough of a challenge for MS-UK’s long term supporter Clare Thompson and her running buddy Dave, who completed the course wearing an MS-UK branded purple tyre!
It was a great day, everyone had loads of fun and the Great British weather was exceptionally kind to us too.
This week MS-UK received a very handsome donation of £48,750 from the event. Jill Purcell, MS-UK’s Fundraising Manager said 'We are delighted to receive such a fantastic sum of money raised from the event. The amount is equivalent to MS-UK being able to provide specialised supervised exercise sessions to more than 50 clients for a whole year at Josephs Court, our wellness centre in Colchester. Thank you to the Colchester Half Marathon committee, and all runners and volunteers for their generous support. It is always a great event which significantly benefits the local community too'.
Every penny raised from the Colchester Half Marathon helps MS-UK support even more people affected by multiple sclerosis (MS), by raising awareness of the condition and offering services like our helpline, MS-UK Counselling and New Pathways magazine.
Thank you so much to all involved and our amazing #TeamPurple runners!
I wanted to invite you to complete our survey which launched today about loneliness and isolation.
Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.
We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.
The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.
Thank you so much for your contribution,
Head of Services