MS-UK Counsellor, Louise Willis reveals what you can expect from MS-UK Counselling...
Multiple Sclerosis (MS) can present many physical challenges and some can be identified and treated by the medical profession, but what about the hidden emotional and mental challenges that can be faced?
MS affects around 110,000 people in the UK. Each person affected has a different life story, an individual set of beliefs and values, and ultimately a different way of dealing with diagnosis and the changes that MS can bring. There is no right or wrong way forward, but sometimes some extra support can be invaluable at any stage of MS. From diagnosis to new changes and developments, MS-UK counsellors are here for you every step of the way.
One of our trained counsellors will call you at a time that is suitable for you. We ask that you are alone at this time and in a quiet, confidential place and that you are comfortable as the call can take between 30 and 45 minutes. If you are unable to answer the call straight away, we will always ring back around 5 minutes later.
Yes, counselling is a safe and non-judgmental space for you to talk about any worries you might have about any aspect of your experience with MS. Any information we take down is kept on our encrypted servers here at MS-UK and is not passed on to any third parties unless you ask us to.
We will only break confidentiality in the event of a safeguarding issue which would mean any form of harm to either you or someone else.
We will ask you about what is bringing you to seek counselling and about any mental health issues you may have. We will also ask you what times and days are best for you for your counselling sessions. They will be at the same time and day each week for six weeks.
If you are unable to make one of your sessions, let us know as soon as you find out and we can reschedule. However, if this is within 24 hours of the session you may forfeit the session as all of our counsellors are booked in advance.
After your assessment we will pop a counselling contract in the post, or send it via email for you to sign ready to speak to one of our specially trained MS counsellors.
We look forward to meeting you!
It’s been a good while since I wrote. I’ve wanted on many occasions but life has been against me. When you live with a chronic illness, it's a constant uphill battle but when life chucks in more challenges, you just want to scream!
It’s that time of year when bugs bounce around. You do things to help to escape illness. I’ve chucked orange juice down me for the hope of that extra vitamin C prevents any illness but I’ve still sounded like Darth Vader. Little man’s nursery has been a hive of germs. You want him to go but battling against bugs is a neverending game. Me, then little man, me again. I think it was tennis germs. My immune system is even more shot to pieces since MS.
My symptoms flare up when I’m sick, especially my fatigue. The MonSter comes back with a vengeance. Big effort! You just want a break. Last weekend, I woke up to not being able to walk. I bought a rollator/wheelchair combo as my scooter broke recently (another story). I needed a back up plan. Good job I did have one. Little man’s daddy wheeled me into church as I didn’t want to miss Remembrance Sunday service. I’ve got a poster used in the war “Keep calm and carry on”. You just remember what others have done to make you, your family and friends safe, and it all blends into perspective.
MS is a pig of a disease. When people ask, 'How are you?' and you reply 'OK', it’s because in the past replying with the truth doesn’t help many and it is easier, less effort to say 'OK'. Everyone has their challenges. You don’t know what they are. That’s the biggest lesson I’ve learnt from having MS. Simply be kind to others. You don’t know what sh*t they are dealing with.
I was recently given some drugs for my MS bladder as an interim solution as I’m waiting for Botox. I had a bad reaction to them, so no longer taking. I should have known as every drug I’ve taken has caused me medical grief. To add insult to injury, we’ve had home leaks to contend with. As the phrase goes, 'It never rains, only pours'. Little man’s daddy asked, 'Is that a joke?'
As you can read it’s been pretty interesting. Maybe I should rename my blog to “ poorly pi**ed off parent”. When I’m feeling rubbish, I think of that war poster “ keep calm and carry on”. That is my option, she says coughing again.
You can read more from Joanne on her blog, Poorly parents.
‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.
‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.
‘Sitting here now typing this still breaks my heart and brings a tear to my eye.
‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.
‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.
‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.
‘I regret not making the most of the last good years with him while I still had the chance.
My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.
I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’
You can find out more and make a donation on Gavin's JustGiving page.
It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.
MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:
One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.
Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.
If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.
In the task, you will be presented with fifty short descriptions of different scenarios. This will be split into ten blocks of five, with a rating task after each block.
Using a 4-point scale, the researchers would like you to rate how similar in meaning each sentence is to the description that you read with that title. The ratings will be used to inform the materials for tasks, and it’s completely anonymous.
You can do the task online using this link: https://kcliop.eu.qualtrics.com/jfe/form/SV_5cAkSnZHlxPZ1nT
Chew’s research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS. Jowinn Chew is supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.
It’s World Mental Health Day, an annual day to highlight the importance of looking after your mental wellbeing that is recognised by the World Health Organisation.
To recognise the day, the Prime Minister Theresa May has appointed a minister for suicide prevention. Jackie Doyle-Price will add this to her role as Health Minister to help tackle the stigma surrounding suicide.
Here at MS-UK, we have been told that when it comes to living with multiple sclerosis (MS) the mind is often overlooked. That’s why this time last year we launched MS-UK Counselling, a confidential telephone counselling service for people with a diagnosis of MS.
I wanted to let you know a bit more about it, as it is World Mental Health Day. The only service of its kind, MS-UK Counselling is focused on helping people with MS explore the emotional impact of living with this condition.
It is very common for people to struggle with coming to terms with a diagnosis or dealing with the uncertainty of how their condition may progress. For some, MS-specific counselling is crucial in supporting them to come to terms with their condition, understand their feelings and live positively with MS.
So if you are thinking about your mental health today with all the media attention on World Mental Health Day, do visit our web page to find out more about MS-UK Counselling. Our team of counsellors are here to help and support you,
Head of Services
With the recent announcement that the government and a number of major high street brands are backing the UK’s first ever inclusive shopping day aimed at supporting the disabled and immobile, accessibility in our cities and towns will be vastly improved for those with multiple sclerosis (MS).
Called ‘Purple Tuesday’, the innovative scheme will take place on 13 November and will see retailers including Argos, Asda, Sainsbury's and Marks & Spencer introduce new measures to make shopping a more comfortable experience, especially for those in mobility chairs.
But whilst this is much-needed progression, many people are unaware of the experiences that approximately 10,000 MSers deal with before they can even enjoy the luxuries of shopping and eating out – things we often take for granted.
For instance, someone who has the condition may have to rely on a wheelchair or mobility chair as a means of getting around. Unfortunately, this can involve a lot of hoisting, such as from a bed to a chair, which can put a considerable amount of pressure and strain on loved ones.
Once in the chairs, accessibility can still be an issue. If the chair can’t be modified, for example, simple tasks such as going out into the garden, or even entering the lounge or living room from the bedroom to spend time with family and friends can become an unnecessary challenge.
If an immobile person is deprived of accessibility for a prolonged period of time, isolation and loneliness can become a daily issue. In the worst-case scenario, a lack of accessibility can have a detrimental effect on the person’s mental health, with illnesses such as depression arising from feeling as if they have no freedom or independence.
So, it is important to remember that mobility is about more than just making places accessible. Yes, chairs the immobile use must be inclusive to utilise accessibility, but ultimately, they need to ensure the user is kept comfortable and safe.
A bespoke mobility chair, for instance, can be adapted to cater to an individual’s specific needs. Adjusting a specialist lounge chair to suit the user’s environment or varying physical needs, will make spending quality time with family and friends a more comfortable and accessible experience.
As well as being portable, multi-adjustable, with tilt in space capabilities and light in weight, bespoke chairs can provide those with MS with a greater sense of independence and freedom, while offering the highest level of security, safety and stability.
Overall, as a nation striving for more inclusivity, we must make mobility more comfortable for those with MS. Yes, retailers recognising the need to better improve accessibility for mobility chair users is fundamental in reaching our ultimate goal of creating a fully inclusive society, but we must also endeavour to make the user’s quality of life as comfortable as possible both in and outside of the home.
Let’s continue to talk about accessible shopping to raise awareness. Why not share your good and bad shopping experiences, or what mobility aids make shopping possible for you. Visit out Facebook page to add your comments.
This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.
Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.
Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.
Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.
Editor, New Pathways
Emma Britneff, a Trainee Clinical Psychologist from Royal Holloway, University of London is conducting a study to evaluate whether an online resource called ‘Valuing Goals’, which offers skills training in goal setting and action planning, can improve well-being for people with multiple sclerosis (MS). The study has been granted ethical approval by Royal Holloway Research Ethics Committee (REC Project ID: 717).
'Valuing Goals' is an online training programme that helps people to identify and work towards positive personal goals by teaching specific skills step by step. It has been designed by clinical psychologists and based on research that shows goal setting, planning skills and working towards valued goals are associated with high levels of wellbeing. Previous studies have found this programme to increase wellbeing and quality of life in the general population as well as in groups of people experiencing lowered wellbeing. Emma is now conducting a study to evaluate if the Valuing Goals programme can be as beneficial for people living with MS, and she is looking for volunteers to take part in the programme.
If you would like the opportunity to have some online training in how to work towards personal goals, and to take part in some research please go to the link below for further information by clicking it or pasting it into your internet browser before 31 August 2018.
Please note this is an external study.
In her new guest blog Chloe Metson talks of dealing with depression...
People often ask how I cope with having MS, and truth be told, it’s rarely the MS that is the problem. Of course, living with relapsing remitting MS can be extremely tough, what with it’s up and downs, but no, the thing I find hardest about living with MS is the depression.
MS and depression go hand in hand for a lot of patients. Whether it is caused from living with a highly stressful situation, or actually physically caused by the MS itself, for me it’s undoubtedly the most difficult thing to cope with. It consumes me, and I become a shadow of my former self. Usually happy-go-lucky, this change is particularly hard for family and friends.
If you’re lucky enough to have never experienced depression, let me try and explain what it feels like.
Depression is darkness and fear that is targeting you as a person, and as far as you’re concerned, no-one else. It becomes sort of a cloak that others can’t penetrate and you feel it protects you from others. It completely numbs you in such a way that the only emotions you are capable to feeling are the horrible ones, and the only thing that alleviates it is sleep when you can get a break from the aggression going on in your head.
I’ve been at that point where all hope is lost, because it takes over and consumes you, and it’s the hardest thing I have ever dealt with. It felt so tempting to take the option to give up on things completely, because it was so utterly exhausting having to battle it. But I fought on and came through the other side.
I’ve been living with MS and depression for 16 years now. I believe I’m over the worst of it as I have no trouble in focusing on the future and the positives of my life, thank goodness. MS throws up it’s challenges, but at least I feel like I can cope with them now. But how did I reach this point? Firstly I learnt to be kind to myself. I took the time to rest if I could, and did nice things for myself, even if they were only small. I stopped beating myself up over negative thoughts. Depression is an illness and it deserves the respect of one. If you had a broken leg you wouldn’t be reckless and run around on it, so I learnt to respect my mind and give it the space it deserves. I tried to focus on the positives and the little sparks of happiness in life. Most importantly I’ve been trying to talk about it, and accept help whenever I can, however hard that may be.
There is such a stigma in our society towards mental illness. Perhaps if we were less unsympathetic and ignorant towards it, it would give a sufferer more breathing space and the encouragement to find the strength to battle it and allow their true selves to ignite again. Depression can be fought, and you can win the war. I’m living proof that however bad things may seem, if you are patient, there can always be light at the end of the tunnel.
If you need to talk to someone please contact our Helpline either on 0800 783 0518, or via our Live Web Chat service.