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Self-esteem and MS - Part 1

Posted on: July 11 2019

Louise Willis (Headshot).jpg

MS-UK Counsellor Louise Willis discusses how MS can affect your self-esteem and how you can make improvements in the first of three blogs

What is Self Esteem?

How we feel about and perceive ourselves is often termed as our ‘self-esteem’.

As the psychologist and once close friend of Sigmund Freud, Carl Jung once said; ‘the most terrifying thing is to accept oneself completely’. This is often at the heart of why some of us can find it incredibly difficult to hold ourselves in the same high regard that we do others.

Far from being a stable idea of a sense of self, our self-esteem can be fragile and mercurial by nature, a reaction to our perceived successes and failures. How we view ourselves is an often intangible feeling that has its roots firmly planted in our past experiences and early life.

For some, when self-esteem is unconsciously associated with a particular role that we play or physical or mental attribute, finding ourselves with a chronic illness which can affect this part of our identity can have a huge impact on our sense of self-worth. By putting a value on the part of our being which we believe to have been compromised while ignoring the rest of our attributes, our sense of self or self-esteem can be hugely rocked.

Self-esteem can be knocked or damaged at any point in our lives, from our first beliefs about who we are and what we mean to others and our place in the world to the loss of a partner or an illness in old age.

What can we do about it?

Understanding and accepting that we as humans are never going to be ‘perfect’ is always the first step, but there are some tips that can help us to understand the process of regaining a feeling of self-worth and to build some new strong and healthy self-esteem building habits. These tips are all backed by scientific studies centered on neuroplasticity which is the fancy term for our amazing brain's ability to adapt and change. It is now widely accepted that the brain’s capacity for regeneration and growth never stops no matter our age, so there really is no excuse!

In the next instalment of this three-part blog series​ will be published 18 July 2019 and we will look into helpful tips to start you on your way to feeling better about yourself.

Guest blog: Cycling 100 miles together!

Posted on: July 09 2019

In this guest blog, Tijmen Wigchert tells us all about riding 100 miles in aid of MS-UK with his colleagues at Carter Backer Winter (CBW)...

With MS-UK being CBW’s Charity of the Year, we got a team together to do a 100 mile bike ride on Saturday 29 June (the hottest day of the year).

The ride was completed (by most) on Saturday.

After months of hard training (or days in my case!) the day was finally upon us. Turned out to be the hottest June day since the 70s. Temperatures predicted to be about 33°C. We had a team of seven colleagues and were joined by two clients as well.

Everyone had arrived by 7:00 ready for their bacon sandwich from Leman Café who kindly opened up just for us. Nine clueless individuals set off at 7:40am heading west in the general direction of Reading. Taking the cycle superhighway from the office to our first landmark, the Houses of Parliament. I looked at my watch tracking the distance and time and we had clocked up the first three miles. I thought to myself, this is easy. In jovial spirits we started to head out of the city passing Craven Cottage (the home of Fulham FC), through Chelsea and eventually crossing Putney Bridge. Seven miles down and no issues.

Photo of cycling team at Richmond Park
The state of the group after 13 miles. Pretty uneventful!

First Stop – Richmond Park (8:45am). First toilet and refreshment break. After the short stop we set off, with our sights set on the next part of the trip. The tunes went on. Listening to some classics such as Ebeneezer Goode, Rhythm is a Dancer etc. the team got in their Rhythm until the sat nav took us off road. We went wrong somehow, somewhere.

We followed the Thames path towards Hounslow. Things were going nice and smoothly setting a good pace along flat roads passing Heathrow, through Staines (we saw some great towns!) and on to Runnymede, our second stop. 22 miles down and the heat was increasing. It was 31°C and refreshments were needed.

Final Stop - The George pub, in the suburbs of Reading. The clock had clicked over 50 miles, we had finished the outward bound journey, completing it in 4:43 (riding time 4 hours) and it was time to stop for a well earned lunch. We dived straight in the pub asking for menus and it was quite an easy choice. Seven Ham, Egg and Chips, a Chicken Burger and the vegetarian option with nine cokes. Checking the thermometer in the pub garden, it was showing 38°C!!!

The finish line ended up being Westminster after a few wrong turns throughout the day had meant that 100 miles was clocked up before getting back to the office.

Photo of the cycling team from CBWDuring the journey back we sadly had three people that had to drop out due to the heat and dehydration.

MS-UK has been very supportive during the build up to the ride and gave plenty of tips which really helped organising. At the end we raised just over £2,500. It was a great day with a great team. We are looking at our next ride soon (hopefully on a cooler day).

Visit CBW's JustGiving fundraising page

Feeling inspired?

Every penny raised by Tijmen and his team at CBW helps us support even more people affected by multiple sclerosis (MS). Get in touch with the fundraising team today to find out more about getting involved!

MS Mind Set

Posted on: July 08 2019

DAWN Langdon.pngProfessor Dawn Langdon asks for your help to tackle MS cognition

Many people with multiple sclerosis (MS) experience cognitive difficulties; poor concentration, trouble remembering, some call it “cog fog”. We know quite a bit about how these difficulties play out on formal tests that psychologists use. But we are less good at understanding the experience of people with MS with cognitive difficulties.

There are a number of questionnaires that report cognitive difficulties that have been designed for people with MS, and others which have been suggested that might be useful for people with MS. The point is that it will probably never be possible for every person with MS to be offered a cognitive assessment. Some of us are working towards making this happen (researchoutreach.org/articles/bicams-cognition-multiple-sclerosis). But we have to be realistic about the current situation.

We are trying to find a questionnaire that a person with MS could fill in, which could tell any health professional something useful about that person’s experience of their cognition. This could help the nurse or doctor present health information in a helpful way. It could flag up cognitive difficulties to health professionals and trigger them to monitor the additional risks that cognitive difficulties bring (poor disease management, including medication adherence; increased risk of falls and driving accidents; decreased involvement in life generally, including employment difficulties). I don’t want to sound too gloomy here. But if we are to make progress we have to have information. This is our ammunition in the fight for better services.

Take the survey

If you would like to help, are a person with MS and can spare 30 minutes, please fill in our online survey.

Also please pass this on to anyone else that you think might be interested.

This study is the MSc Clinical Psychology thesis project for two students at Royal Holloway, University of London, where I work. Their names are Tabby Mahoney and Nathalia Bosoko.

If you would like more information about cognition and MS, you could visit the MS Trust’s website www.stayingsmart.org.uk.

You could also look at the books by Jeffrey Gingold, who is an expert MS patient advocate:

  • “Facing the Cognitive Challenges of MS”
  • “Mental Sharpening Stones: manage the cognitive challenges of MS”

These are available on Amazon and some of the profits go to MS charities.

Jeffrey has also recently done a Webinar, “Facing and Manging the Cognitive Challenges of MS”, which you can watch on YouTube.

How to get involved

If you have any questions about the survey or would like to help us with our work on cognition in MS, please get in touch (d.langdon@rhul.ac.uk). I have to ask for your understanding, because this is a busy few weeks in the university, and it might take me a week to get back to you.

Getting to know the national therapy centres...

Posted on: July 08 2019

Hello,

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

Photo of MS charity CEOs at the conference
Nick from MS Society, Amy from MS-UK, Frank from MSNTC and David from MS Trust

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!

Best wishes,

Amy

Amy Woolf, CEO

Guest blog: Skydiving from 13,000 feet!

Posted on: July 04 2019

Image of Maddy landing after skydiveIn this guest blog, Maddy Spurgin tells us all about jumping from 13,000 feet as she took on a skydiving challenge in aid of MS-UK...

So just a bit about me, my name is Maddy, I’m 16 years old and decided to do a 13,000 feet skydive for MS-UK! I completed this on 24 June 2019 and it was one of the most amazing experiences of my life (even if it was very scary). 

The reason I chose to do this was because back in October 2015 my mum was diagnosed with multiple sclerosis (MS) and therefore I have witnessed how cruel the condition can be and wanted to support those living with the same thing. I have also been volunteering for the charity for a while and have seen how caring the MS-UK staff are and after being given the skydive as a birthday present I saw it as a perfect way to give back to MS-UK.

Before, I would have never have dreamed of doing a skydive but I'm so pleased that I did. Not only did the skydive raise £600 for MS-UK, it was also an amazing opportunity to face my fears because life is too short!!

Visit Maddy's online fundraising page

Feeling inspired?

Get in touch with Lucy at MS-UK on 01206 226500 or email Lucy today to find out more about skydiving in aid of MS-UK!

Email Lucy

Guest blog: My marathon packing checklist

Posted on: July 01 2019

Photo of Jenny Brown from Hobby HelpIf you are going to be taking on your first ever marathon in the near future, we have you covered. In this guest blog, Jenny Brown shares her top tips for marathon packing...

After logging thousands of miles over the past decade, I’ve consulted my running journals, reflected on my best and worst races, and compiled the information I wish had been available to me before running my first 26.2.

If you’re a little (or a lot!) apprehensive about running your first marathon, the following information is sure to help you feel prepared and more confident.

You can read my full blog ‘The Ultimate Beginner’s Guide to Running your First Marathon’ on the hobby help website today.

Marathon packing checklist

  • Running shoes
  • Running socks (avoid cotton)
  • Running shorts, cropped pants, or tights
  • Sports bra
  • Moisture-wicking tank or tee
  • For cold temperatures: Jacket and/or arm warmers
  • Throwaway gear (long sleeve shirt, pants, hat, and/or gloves you don’t mind ditching before the race. These items are typically donated to charity)
  • Bag to hold gear
  • Bib (filled out) & safety pins
  • Timing chip
  • Race information (address, directions, start time, etc.)
  • Driver’s license or other identification
  • Cash (bills are best)
  • Cellphone
  • Running belt
  • Water bottles (filled)
  • Headphones
  • GPS watch
  • Lip balm (preferably with sunscreen)
  • Medications, including pain reliever
  • Fuel (gel, chews, candy, etc.)
  • Hair ties/hat/visor
  • Sunglasses
  • Sunscreen
  • Post-race outfit to change into
  • Post-race food and drinks
  • Towel
  • For cold temperatures: A blanket, coat, hat, and gloves
  • Anti-chafing stick or Vaseline
  • Tissues
  • Bandages
  • Shoes and socks to change into
  • Wet wipes
  • Cellphone charger

Feeling inspired to run?

Find out more about running the Virgin Money London Marathon 2020 in aid of MS-UK.