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‘I always wanted to be a pirate’

Posted on: January 06 2021

Debra.jpgDeborah Searson was diagnosed with multiple sclerosis during lockdown… She is sharing her story to help others who may find themselves in a similar situation

This is my story of how I became diagnosed with multiple sclerosis (MS) after the shock and realisation had set in, I realised life doesn’t stop and for me, the way through was to put into writing my experience with a little added humour.

I woke for work at 6am on a Spring Saturday morning in late April 2020, I stood and stumbled slightly, probably due to the few red wines I’d had the night before (or so I thought) I went back into the bedroom and stood in front of the mirror to put on a little makeup. As I stood there, I was trying to focus my eyes on my face and just couldn’t get a clear picture. How many wines did I have last night? My job involves me at times being in a senior role and that day was one of those, Great! I had no choice but to go in, with the Coronavirus very much part of my job, I had to go and make sure everything and everyone was OK. I only managed to stay an hour or so.

Once home I slept hoping when I woke up it would have resolved itself but it hadn’t. Whilst this was happening, we were in a full lockdown due to Coronavirus, I rang the eye clinic at a local hospital and asked if they could see me. What I’d noticed is that it seemed to be double vision I was having, where images were on top of one another not side by side and that it did return to normal if I closed one eye? They were unable to see me due to pressures at the hospital so I left it a few more days hoping that it would resolve by itself.

I eventually managed to get an eye examination at an Opticians but this was done at a social distance and they told me they thought that I may have Strabismus now to anyone that is not an optician, meant I had cross-eyes! What? How? Why have I never noticed this? They said I would need to wear a Prism on my glasses which would help restore normal vision, but they couldn’t give me one due to the pandemic.

A few more days passed and the double vision was starting to make me feel like a drunken sailor ready to walk the plank, I remember texting one of my friends who also works at the same place as me and they somehow managed to get me an eye clinic appointment (lifesaver literally).

So eventually, looking like an extra from Pirates of the Caribbean, with my eye patch on, secretly enjoying the daily fancy dress, I got an eye clinic appointment and, on the photos/scans they’d taken of my eyes, they said there seemed to be high pressure on the optic nerves and I would need a lumbar puncture. After which I was diagnosed with Idiopathic Intracranial Hypertension.

Over the following month, I began to feel worse by the day and in late May 2020, I was in and out of the hospital, sent home each time with what they thought was Gastroenteritis.

It wasn’t until I went for a follow-up eye clinic appointment in June 2020 the consultant brought up the latest MRI scan results showing I had extensive inflammation on the brain. I was kept in hospital and given steroids, it was here that the words multiple sclerosis were first spoken to me. In all honesty, I’ve worked in the medical profession for the last 15 years and I didn’t really know much about MS. The MS Society website helped me get to grips with it and reading other blogs made me feel less alone.

I have launched a blog and if anyone would like to read further about my journey with some humour added in you can visit, Youregettingonmylastnerve.co.uk

MS in the time of Covid

Posted on: December 08 2020

iStock-1168227653.jpgFrankie Washington and Dawn Langdon from the Royal Holloway, University of London discuss how the pandemic has led to people leading less healthy lifestyles

The Covid-19 pandemic has caused enormous disruption to our daily lives and there have been particular challenges for people with multiple sclerosis (MS). Staying safe and well is the most important thing and following all government Covid advice must be a priority for all of us. Keeping a focus on health and wellbeing is also important, and you can do this in several ways.

1. Managing your MS

With all the stress and restrictions of the pandemic, even keeping normal life going can be hard. But continuing to manage your MS well is still important. Although it might need more energy and persistence to get appointments and medication, it is very important that you manage your MS optimally, even in these difficult circumstances. Why not enlist a friend or relative to help with the phone calls or transport? Most people want to help, they just don’t always know how or when.

2. Physical activity

Survey data indicates that about half of people with MS have stopped or reduced their physical activity during the pandemic. Physical activity is important to maintain health and wellbeing. It is a good idea to put together a weekly plan for your physical activity, while following government Covid guidelines. Resources about physical activity for people with MS, including accessible exercises, can be found on our YouTube channel which you can go to by clicking HERE, and we also run exercise classes on Facebook Live twice a week which you can join in with from home. Click HERE to go to our Facebook page, give it a ‘like’, and you’ll get all the information you need. Click on the ‘videos’ tab to access all previous sessions, too.

3. Diet

It can be hard getting shopping and cooking organised in the Covid era, but diet also has a role in optimising your health and wellbeing. Unsurprisingly, in one survey a third of people reported gaining weight during the pandemic and this is also true of people with MS. In fact, there is evidence that people with MS eat much the same things as the rest of the population. But eating healthily is probably more important for people with MS.

A small uncontrolled study reported that people with MS who followed a low glycemic load diet, with support, experienced improvements in sleep, mood, anxiety, emotional health, and pain. Advice about healthy eating and managing your weight can be found in our Diet and Supplements Choices booklet HERE but in fact good general nutrition advice is the same for people with MS as the rest of the population. The NHS has some helpful advice on weight loss at https://www.nhs.uk/live-well/healthy-weight/start-the-nhs-weight-loss-plan/.

You might want to set up an online group, or you may already be in one, where you can meet up to prepare and eat healthy food, encouraging and supporting each other. Healthy doesn’t have to mean boring!

4. Mood

The COVID pandemic has affected the mental health and wellbeing of the general population, unsurprisingly given the restriction of activity and isolation that it has brought. It appears that this impact is more pronounced for people with MS. One study reported that compared with the general population, people with MS experienced more depressive symptoms, a worse sleep quality and perceived an increase in fatigue level, one of the most disabling symptoms of MS as you will know.

Sometimes a few simple steps can help to improve mood, and the NHS has got some good advice here https://www.nhs.uk/conditions/stress-anxiety-depression/improve-mental-wellbeing. There are ways of coping with stress that seem to work best. These are active strategies, such as

  1. Support. Talking about a stressful event with a supportive person can be an effective way to manage stress. Seeking external support instead of self-isolating and internalising the effects of stress can greatly reduce the negative effects of a difficult situation.
  2. Relaxation. Any number of relaxing activities can help people cope with stress. Relaxing activities may include practicing meditation, sitting in nature, or listening to soft music.
  3. Problem-solving. Identify a problem that is causing you stress, and develop potential solutions for effectively managing it.
  4. Humor. Making light of a stressful situation may help people maintain perspective and prevent the situation from becoming overwhelming.
  5. Physical activity. Exercise can relieve stress. Many other types of physical activity can help people cope with stress. See above for ideas.

Why not devise a menu a coping menu of your own, to use when things get difficult. For example, talking things through with friends or relatives, taking a walk, doing an online yoga class, or tidying a cupboard.

If you feel that professional help is required, then contact your GP or MS Nurse. Many psychological therapy services are now working online, so you wouldn’t have to visit a hospital or clinic to get help.

Hopefully, you are not feeling too overwhelmed by Covid and this article has given you a few ideas to support your wellbeing. We are currently conducting a survey about living with MS in the Covid era. If you wanted to help us, you can participate via https://rhulpsychology.eu.qualtrics.com/jfe/form/SV_3FahObokk4tdwTX. It takes 15 minutes. 

Frankie Washington is a graduate psychologist who is training to be a clinical psychologist. Dawn Langdon is Professor of Neuropsychology at Royal Holloway, University of London.

'Not all disabilities are visible’ - International Day of People with Disabilities

Posted on: December 03 2020

Martin profile 4.jpgThe theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.

The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware.  Kinder. And understanding.

Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.

People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus.  In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.   

It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.

To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable?  It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.

Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour. 

I am Martin Baum.  I am a proud MSer.

#LiveLifeNotMS

Head on over to the MS-UK Facebook page and like and share our posts for the International Day of People with Disabilities. Help us raise awareness of the hidden symptoms of MS - www.facebook.com/MultipleSclerosisUK/

We have another new Choices booklet!

Posted on: November 19 2020

Spasms and spasticity front cover.JPGWe have been very busy on the MS-UK Helpline, not only answering all your calls, emails and web chats but writing new publications so you can be as informed as possible when it comes to managing your multiple sclerosis (MS).

Spasms and spasticity is a subject that you, the MS community, asked us to write about. Symptoms that are commonly experienced but not always really known what they are, what the difference is, or the many ways in which they can be managed.

This booklet will really help people to understand these symptoms, what causes them and the effects they can have. The booklet explains a variety of self-management techniques, as well as information on physiotherapy, different treatment options, complementary therapies and more. 

We surveyed the MS community about how they deal with their spasms and/or spasticity and we had great feedback. Thank you to those who shared their experiences. We have included a number of quotes within the booklet which really help to bring it to life. We do this with all our booklets because we can all learn from other people’s experiences. What works for one person will almost certainly help another.

You can download our new booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.

To take a look at our full range of Choices booklets visit our website here. If you can’t find what you are looking for then please do contact our helpline and we will be happy to speak to you. We are here to provide unbiased information and professional support. We also provide emotional support should you just need someone to talk to.

We are here to help you to live a happier and healthier life.

 

Laura and Ryan

MS-UK Helpline

“I don’t have to make a mess of the music in church anymore”

Posted on: November 04 2020

nina picx22.jpgNina Pearce discusses her journey since diagnosis

I know that my multiple sclerosis (MS) probably began when I was 30 and had just had my second child. I had optic neuritis, where there was a big blank splodge in the vision of one of my eyes. It got better with no treatment and no mention of MS. I thought I had had a stroke as the left side of my face was numb.

I wasn’t very sympathetically told I had MS, nor of any treatments. That was left to the fortunately much more understanding MS nurses who told me what type of MS I had and the treatment for pain and spasms I get.

Progression

I was OK for about three or four years, then my condition began to develop and my balance got much worse. My dominant left hand developed a tremor, so it was a relief that I retired from teaching in 2014 as I couldn’t write any more – marking books was out of the question.

I used to play the piano, organ, violin, trombone and guitar, but even playing the organ in church can no longer happen. Fortunately my husband retired as a vicar so we moved permanently to the bungalow we bought when I was still teaching. We are in a new area and I don’t have to make a mess of the music in church any more.

Welcome support

I have found MS-UK invaluable for support and help. In spite of COVID, the online gym sessions and the classes such as seated yoga are immensely enjoyable and I would suggest that anyone should take part. If you look on their YouTube channel here you may find more activities to join in with.

My mum has had relapsing remitting MS for about 60 years and counting. She refuses to use a rollator and begrudgingly uses one stick. I grew up having to do more in the home than many of my friends, something I tried to tell my children about as they were growing up!

I need my rollator in the home and to get to the car, or my new mobility scooter and not forgetting my tricycle. We have completed 1,200 miles so far this year. I cannot balance on an ordinary bike anymore. My husband helps push me up the more steep hills, and we try to do four and a half miles a day.

We look after our youngest granddaughter one day a week and I’m very glad that the government has said grandparents can do childcare. This has meant that we can also be on hand to pick up any of our other grandchildren from school, which we enjoy a great deal.

 

 

“I was defensive, moody and argumentative”

Posted on: October 19 2020

Martin_0.jpgMartin Baum shares his mental health challenges and how the chips on his shoulders were holding him back

I have generally found there to be a fine line between multiple sclerosis (MS) and mental health if only by association, for being filed under ‘I’ for invisible illnesses. In a week that recently brought World Mental Health Day to the fore, I was made aware that men are not great talkers - or should that be sharers? – which struck a chord with me.

Certainly, coming to terms with my own mental health experiences while trying to cope with MS was something, on reflection almost 40 years on, which I feel had had less to do with not talking but more about not listening. Or to be brutally honest, my own problems had as much to do with MS as it did with my own belligerent nature.

For me it was never a case of not wanting to talk about how lousy life was because I never stopped. I had no filter. I was defensive, moody and argumentative. Nobody was understanding - or understanding enough in my view - to appreciate just how awful my life had become. But then, isn’t that the way for anyone with a fragile state of mind and a huge chip on both shoulders?

Stubborn 

The ’I’ file soon began to swell with injustice, insecurity and isolation. Yet the lonelier my world was, the more critical of others who wanted to help me I became. I still would not allow myself to be persuaded away from a deafness towards anyone who didn’t agree with me.

Subsequently, and to no great surprise, my mental health began to buckle but, fortunately, it was still strong enough not to break. Just. What saved me from going under was something I heard myself saying to somebody I had become close to that still makes me shudder with shame to this day.

“How are you?” she asked.

“How do you think I am?” I bristled.  “I’ve got multiple sclerosis!”

Adding inexcusable and indefensible to the burgeoning ‘I’ file was not something to be proud of. 

Wake-up call

Shocked by the obvious hurt I’d caused, reducing her to tears by replying in such a cold, cowardly and unnecessary way – and afraid of losing someone who meant so much – was the moment I began to face up to some awful home truths, marking a distinct change in attitude. Taking ownership of my MS, however, would take longer.

But thanks to the power of love, Lizzy forgave and married me and almost 30 years on not only is she still my wife but also, such is the reality of the illness, she is my carer too. The last entry into the ‘I’ file is Inseparable because together we have grown with my MS. We own it, deal with it, live with it. Yes, I still have moments of mental hardship but thanks to Lizzy I’m no longer left to face them alone.

 

 

 

Mental health resources and links

Posted on: October 12 2020

Thank you to everyone in the MS-UK community who got involved with our World Mental Health Day event on Saturday 10 October. We just wanted to bring all the resources together in one handy place, so anyone can access them in the future. 

Here's a list of links for the resources. If you would like any support, please get in touch. MS-UK is here for anyone affected by multiple sclerosis (MS) and you can reach us on 0800 783 0518 or by contacting us via our online web form.

Blogs about mental health resources

Read our blog about mental health organisations

Read our blog about mental health professionals

Read our blog about mental health apps

Read our blog about cognitive behavioural therapy (CBT)

MS-UK mental health services

Find out more about MS-UK Counselling

Find out more about our Single Session Therapy pilot

Our Loneliness and Isolation Report

This year we commemorated World Mental Health Day by sharing the findings of our Loneliness and Isolation Report. You can find out more about this piece of research by reading the full report below or visiting the web page

Read the report (PDF version)

Mental health organisations

Posted on: October 10 2020

Across the UK, there are a range of mental health charities and organisations offering support and information. Here we have listed some well-known organisations which you may find useful.

For a longer list of organisations that specialise in certain areas, visit the NHS website.

What to do if you need urgent help

The NHS urgent mental health helplines provide 24-hour advice and support for anyone living in England. You can find a helpline number using the NHS website

If you feel you or someone else is at risk of serious harm or injury, please call 999. 

Mental Health Foundation

The Mental Health Foundation aims to help people understand, protect and maintain their mental health. The offer community and peer programmes, undertake research, give advice to people affected by mental health conditions and campaign for change.

Visit the Mental Health Foundation website

Mind

Mind provides advice and support to empower anyone experiencing a mental health problem. They also campaign to improve services, raise awareness and promote understanding. They run an Infoline, a Legal Line and produce publications about a wide range of mental health issues. 

Visit the Mind website

Local Mind organisations

Across the UK, Mind have a network of independent local Minds that are run by local people, for local people. They provide support like advocacy, counselling, housing advice and more.

Find your local Mind

Rethink Mental Illness

Rethink Mental Illness offer a network of 140 local groups and services and they offer expert information via their website. They also campaign to make sure everyone affected by severe mental illness has a good quality of life.

Visit the Rethink Mental Illness website

Samaritans

Samaritans offer a 24-hour helpline that anyone can contact if they are struggling with their mental health. You can call them any time, 365 days a year, on 116 123 for free. Samaritans also accept email enquiries, letters and have a self-help app on their website. 

Visit Samaritans website

Sane

SANE provides emotional support, guidance and information to anyone affected by mental illness, including families, friends and carers. 

Visit the Sane website

More information about MS and mental health

You can read our Choices booklet about MS and mental health online today or order a printed copy.

Visit the MS and mental health web page

Who to ask for mental health support

Posted on: October 10 2020

Image saying 'mental health professionals' with a green ribbonSaturday 10 October 2020 is World Mental Health Day. Here at MS-UK we are reflecting on the findings of our Loneliness and Isolation Report, hoping to bring these important issues into the light.

We are also sharing mental health resources live throughout the day on our Facebook page (join us on Facebook between 10am - 3pm). 

There are a number of health professionals who can help to support you if you are experiencing mental health issues.

Talk to your GP

This is often a good starting point if you are feeling anxious, having trouble sleeping or beginning to worry about your mental wellbeing. It can be difficult to start this conversation but your GP will be able to offer advice and refer you on to mental health services if they feel it is needed. Your GP may mention the IAPT programme, which stands for 'Improving Access to Psychological Therapies. You can find out more about IAPT on the NHS website.

Talk to your MS nurse

MS nurses are familiar with multiple sclerosis (MS) in a way that means they can spot signs of low mood or depression, sometimes before you notice them yourself. Talk to your MS nurse if you have any worries and they will be able to signpost you or refer you on to other support. 

Counselling

Counsellors do not offer advice and will not tell you what to do but can help you to talk about your experiences to make it easier to find a way forward. MS is an unpredictable condition and learning to live with this uncertainty can be challenging. Counsellors can help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.

MS-UK Counselling is a telephone service that is available to anyone with a diagnosis of MS. You can register online for MS-UK Counselling or ask a health professional to refer you. If you would like to try face-to-face counselling, check if your local MS Therapy Centre or local MS Society group offers this. You can also search for a therapist through the BACP website

More about MS and mental health

You can read our Choices booklet about MS and mental health online today or order a printed copy.

Visit the MS and mental health web page

Mental health apps

Posted on: October 09 2020

Image of a green ribbon with the words 'mental health apps'Mobile phone or tablet apps can be really useful for supporting your mental wellbeing, so this World Mental Health Day we take a look at what is available in the app store at the moment.

At MS-UK, we believe in offering people affected by multiple sclerosis (MS) as much information as possible, so you can make your own informed choices. That's why we have listed as many apps as possible, but which ones you try out are up to you. Where we can, we have also included links to the app websites. 

You can download any of these apps via Google Play or the apple store straight to your smartphone or tablet.

Aura

This app helps people manage their emotions and get a restful nights sleep. It gives options to subscribe for personalised mindfulness meditations as well. The idea behind the app is to find strength and rest through using Aura when you feel stressed or anxious. Visit the Aura website

Breath 2 Relax

This app is all about managing your breathing to reduce stress. It features instructions and practice exercises to help users learn the stress management skill called 'diaphragmatic breathing'.

Catch It

This is a free app that helps you manage feelings of anxiety and depression by turning negative thoughts into positive ones.

Chill Panda

Another free app, Chill Panda measures your heart rate and suggests tasks to suit your state of mind. Visit the Chill Panda website

Headspace

This app is all about developing a mindful approach. It includes guided exercises, videos and meditation. Find out more on the Headspace website

Insight Timer

This is a free meditation app, with paid features you can subscribe to as well. Visit the InsightTimer website

My Possible Self

This app has simple learning modules to help you manage fear, anxiety and stress and tackle unhelpful thinking. It is free, but has some in-app purchases as well. Visit the My Possible Self website

Side by Side

This is Mind's online community, which used to be called Elefriends. It is a forum where you can listen, share and be heard thorugh posting, commenting and private messaging. Visit the Side by Side website

SilverCloud

This is an app that offers a free eight-week course to help you manage anxiety and stress, designed to be completed in your own time and at your own pace. You can find out more about the course on the SilverCloud website.

Smiling Mind

This app lets you track your mood for free and access targeted mindfulness practices. The app suggests you spend 10 minutes a day to help bring more balance into your life. Visit the Smiling Mind website

Togetherall

This is a free online community, offering digital mental health support for anyone aged 16 and over. You can find out more about the forum on the Togetherall website.

WorryTree

This free app aims to help you take control of your worries, one at a time. It helps you record, manage and solve your worries based on Cognitive Behavioural Therapy (CBT) techniques. Find out more on the WorryTree website

More about World Mental Health Day

On Saturday 10 October, MS-UK is posting live on our Facebook page to commemorate World Mental Health Day. This year, the theme for the day is 'mental health for all' and we are sharing the findings of our Loneliness and Isolation Report to highlight how important mental health support is for people affected by multiple sclerosis. 

Follow our page on Facebook to join in

Read the Loneliness and Isolation Report

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