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Making the connection

Posted on: May 29 2020

Clive small.jpgFor World MS Day, Clive Whyte explains how connecting with our counselling service helped him transform his mental health

A diagnosis of Multiple sclerosis (MS) is a very big thing to take on board, and it hit me like a ton of bricks.

At first, I thought I could handle it and just stride through life with no worries – it’s just a condition! However, the mind has a way of catching up with you and stopping you in your tracks. After being diagnosed, I started having issues with anxiety that was affecting my day-to-day life.

I read about MS-UK’s Counselling service and decided to refer myself.

When I had my first session, I spoke to a completely neutral counsellor about everything and anything that had been troubling me daily and causing my anxiety. There was absolutely no judgement, just a listening ear.

After the sessions, I felt like I had lifted a lot of troubling thoughts out of my head. I’d felt like I had a lot of tangled, knotted thoughts in my brain, and counselling helped unravel them. It helped me to think more clearly.

Relationships

My partner is my rock, and she has seen me go through some quite dark moments. However, she tells me she has definitely seen an improvement in me recently. I still have good and bad days, but I feel a lot more in control of my thoughts in general.

My confidence has grown more and more since my counselling sessions, and I feel a lot more comfortable in social situations at work and with friends. Before, I would avoid a lot of these situations due to anxiety.

With time, and the help of counselling, I began to accept my condition and come to terms with a lot of the other things you need to process after an event like this, and that’s exactly what I will continue to do.

Counselling was a way for me to release feeling trapped within, and allowed me to feel more relaxed in myself and with who I am. It’s been a gift for me, and one for which I’m very grateful.

Sign up to MS-UK Counselling

It's World MS Day so let’s talk #MSConnections

Posted on: May 29 2020

YellOrange-Circle-Hashtag_ENG small.pngWorld MS Day is officially marked on 30 May every year. It brings the global MS community together to share stories, raise awareness and campaign with everyone affected by multiple sclerosis (MS).

 

The 2020-2022 World MS Day theme is ‘connections’. MS Connections is all about building community connection, self-connection and connections to quality care. The campaign is about challenging social barriers that leave people affected by MS feeling lonely and socially isolated.

 

Over the last year MS-UK has been looking at the issue of loneliness and isolation within the MS community and during Loneliness Awareness week (15 – 19 June) we will be publishing our report that shares our insights from listening to personal experiences within the MS community. This report will set our learning and the positive action that MS-UK will be taking and how communities and organisations can support this work.

 

We have also recently become members of the Connection Coalition which has been founded by the Jo Cox Foundation alongside Mind, The British Red Cross, Facebook, Age UK, Nesta, NationBuilder and The Cares Family. These members are convening this cross-sector coalition to coordinate, amplify and inspire efforts to reinforce meaningful connections. Their hope is that in doing so, they can mitigate the impact of isolation through the COVID-19 crisis and harness the power of strong relationships and connections for the future.

 

We know that since the start of COVID-19, many people are supporting their neighbours and communities in creative and inspiring ways. However, for some, the challenge of reaching out for support will be difficult, their mental health may be impacted and the local groups and activities they were accessing may not be happening now. It is therefore even more important that people know where to turn and how to get the support they need.

 

At MS-UK all of our national services are still operational and this includes the MS-UK Helpline, MS-UK Counselling and our New Pathways magazine. As Head of Services at MS-UK, I am proud that despite the challenges we have all been presented with we can still support and empower people living with multiple sclerosis to live healthier and happier lives.

 

If you would like to stay up to date with our work or want a copy of our report on Loneliness and Isolation please sign up to our newsletter here www.ms-uk.org/ms-uk-newsletters.

One month on Sarah is still staying true to her 2.6 challenge!

Posted on: May 27 2020

large_Sarah Cross 2_0.jpgSince joining MS-UK’s wellness centre, Josephs Court 3 years ago, the staff and fellow MS-ers have been so supportive and inspiring to me and have massively helped me to live my life in a positive way with my MS. Before the coronavirus lockdown, I was attending Josephs Court twice a week to work on improving my fitness and strength using a Therabike and the Vibe-plate. When Josephs Court had to temporarily close to its clients, they set up weekly virtual coffee mornings and exercise classes and kept in touch with us all, checking on how we were doing and setting up 121 virtual exercise consultations with our Wellness Coaches, which was excellent and really encouraged me to continue to try and keep as fit and well as I can and keep in touch with my friends and family.

When MS-UK publicised the 2.6 Challenge, I thought I could aim to walk 2.6 miles over the week. I decided that this would be a fantastic long-term goal for me to walk 2.6 miles every week and to see how much I can keep improving and so I pledged to donate to MS-UK for every week I walk 2.6 miles unaided for 6 months. I was very pleased that I actually managed to smash my goal, walking 0.8 miles on Sunday 26th April taking my week’s total to 2.8 miles! So what started out as a bit of lockdown exercise has turned into a long term goal thanks to MS-UKs 2.6 Challenge plus I managed to raise some money for MS-UK too!

A month on, and I’m still doing my unaided walking. Fatigue is one of my worst symptoms of MS which is exacerbated by hot weather so my target is quite a challenge in the warm weather we’re having. But having that on-going target is really good for me and is helping me to juggle my “good” days and “bad” days much more effectively and positively in order for me to reach my target. And I love the fact that my 2.6 Challenge target not only helps me but helps MS-UK which helps other MS-ers to live positively – it really helps to keep me going!

"I got very depressed and felt like life as I knew was over"

Posted on: May 27 2020

laura resized.pngLaura Goodall tells us about going from struggling to come to terms with her diagnosis to representing Great Britain in para showjumping

I was diagnosed with multiple sclerosis (MS) in 2015. I would lose the ability to feel temperatures and scald myself when I got in the bath. My skin would hurt and tingle, I was exhausted all the time, I’d fall over and I’d drop things. When I was competing on my horse, my muscles would collapse on me as soon as I got warm, my vision would blur and I’d fall off. I’d then struggle to walk for days after.

I had to stop competing as I kept having panic attacks on the horse while waiting for the symptoms to come. The more stressed I got, the worse the symptoms were. 

Early days

At first, I was relieved to have a diagnosis and to know what was wrong with me. Then reality hit home. I got very depressed and felt like life as I knew was over and I’d never be able to do anything with my horses again. 

I felt like I was going down a black hole. Everything I’ve worked for in my life was for my horses and I got to a stage where I couldn’t even look after them never mind ride them. 

Taking the reins

Eventually, I decided I wasn’t going to let MS rule my life. I’m quite a determined person and felt I needed to do more and not just give up on my dreams. So I visited the doctors, was prescribed anti-depressants, and started to gradually get my fitness back up in baby steps. I began going out for a walk on the horses until I built myself up. Exercising definitely lifted my mood. The more I did, the better I got, and it actually made my symptoms less severe, along with my treatments.

To read the whole article, download the latest copy of New Pathways for free! Download free copy

How to manage frustration

Posted on: May 21 2020

iStock-1179938842 low res.jpgOur MS-UK Counsellors discusses how to deal with this feeling

Frustration is a common human experience, however, it seems to me that MSers have more than their fair share. This is not surprising as frustration is the experience of being upset or annoyed as a result of being unable to change or achieve something. In my counselling work for MS-UK I hear many examples of day to day tasks and other life achievements which can remain elusive for MSers.

Frustration is unpleasant to experience and when prolonged it can lead to low mood which can bring unhappiness, poor sleep, negative thinking, worthlessness and self-pity. Experiencing this for too long or too often is debilitating and can have a ripple effect on others near and dear to us.

A way forward when experiencing frustration may be to try out what is known as distress tolerance skills – distraction and shifting focus. Distraction helps by diverting attention. It works better if you choose something that keeps you absorbed and as different things work for different people it is worth trying some out. Shifting focus helps by noticing the frustration and then deliberately choosing where to put your focus; do you choose the frustration or a different focus? As you "do" your chosen activity, you will notice thoughts, feelings and other distractions come into your awareness so just notice them, then gently bring your attention back to your chosen activity.

A way of shifting your attention away from frustration is by using the ‘Right Now’ method. Say ‘Stop’ to yourself and then think about and say

  • 5  things you can see now
  • 4  things you can hear now
  • 3  things you can touch and reach out and touch them now
  • 2  things you can smell or like the smell of now
  • 1 slow deep breath and then focus on something different now

Some examples of what you might use to distract from frustration are offered below from trying out new things to thinking about what needs doing in your home or garden, and do some work in bite-size chunks to match the energy you have with what you want to do.

Pamper yourself

Try out aromatherapy or reflexology, visit the hairdresser, watch the clouds or stars from inside or out, read, have an early night, eat something new, have a bath or shower, write a list of your achievements – great and small, soak your feet, write a list of things you are thankful for, cuddle a soft toy, watch a feel good, funny or inspirational film.

Get out and about

Try joining a leisure centre or health club, or see what is going on at your local MS Therapy Centre, take a walk or jog, or sit on the beach or in a park, get on your bike or local bus, visit a new church, go to the library, visit a museum, check out what movies are on, go to a concert; browse the shops or car boot sale, find out what free classes are on offer, go out for lunch, learn to drive or go out for a drive, visit a garden, visit an attraction.

Be Creative

Try a new hobby, learn a language, write a story or poem, learn to meditate, do yoga or tai chi, learn a musical instrument or compose music, paint, create a blog or website, sew or knit, bake, take photos or sort out the ones you have, make a scrapbook.

Make contact with others

Phone someone you have not spoken to for a while, join a self-help group, a civil rights group, do some voluntary work, write a letter or email a friend, phone the MS-UK Helpline.

Express yourself physically

Bang a drum, shout or sing loudly, rip up a newspaper, dance or cry.

And finally,

Talk to yourself positively

I can get through this. I can take one hour at a time and these feelings of frustration will pass.   

MS-UK Counselling is here for anybody living with MS and offers space for you to explore your thoughts and feelings in a professional, supportive, and non-judgemental therapeutic space. You can register your interest for this service at www.ms-uk.org/counselling

"Not only did this condition change my capabilities, it changed my sense of self-worth"

Posted on: May 21 2020

MSer and research student Hannah Morris on the psychological impact of diagnosis 

hannah morrisresize.jpgLoss of feeling, loss of eyesight, loss of taste, loss of mobility, loss of balance and loss of energy. These are some of the physical losses I experienced one year prior to diagnosis of multiple sclerosis (MS).

Once diagnosed I was able to get rapid treatment for these things which was great, but it didn’t give me back the losses I faced psychologically. The treatment I was offered would help to restore physical function and even prevent it in the future, but no pill, injection or infusion could help to restore the psychological losses I faced.

Psychological aftermath

To the medics, their job was done once diagnosis had been given and treatment had been administered, but I’d walk away having to deal with a whole lot more than a pill could fix.

Medical treatment gave some consolation for the physical loss and to some extent for the emotional loss, in that I felt reassured that there was some hope, but that was not enough.

Thrown in to the pits of uncertainty, loss would be something I would have to face for the rest of my life; not just physical loss but psychosocial loss also. My role as a mum, a student, a care worker, and a friend amongst others became threatened as I felt unable to fulfil my expectations. My dreams were shattered and my hopes were lost. I had lost everything that I was striving to become. A loss that was bigger than any physical loss I had faced thus far.

My self-worth

Not only did this debilitating condition challenge my capabilities, and future plans but it challenged my sense of self-worth. It might be argued that a pill can actually fix the feelings that are evoked as a result of this and to some extent this is true. But, as with treatments for the physical symptoms, this only treats the physiological consequences of such feelings when something deeper is actually needed to treat the psychological symptoms beyond this.

I felt alone, like perhaps I was the only one who was still feeling the pinch of this illness even after the physical symptoms had been treated and subsided. As a result, I didn’t even think to reach out for support when really I needed it at this time. It was only some years on, after reading the psychological literature in my years as a student that I came to realise that psychosocial loss is in fact a normal part of the MS experience and is often the cause of psychological symptoms such as anxiety and depression. I wasn’t alone after all and I had no reason to have felt this way throughout the earlier years of my diagnosis.

Hidden support

It was only after some years that I realised that there many effective treatments and support available to deal with the psychological losses and consequences of MS. It is unfortunate that such support and treatments don’t seem to be offered or made available to people with MS unless they go looking for them. Furthermore, given the diversity of the MS experience not all approaches are appropriate for everyone so even when they offered they might not be suitable to everyone in meeting each individuals needs.

Ultimately, it is normal to experience ongoing sense of loss in MS, but it is also something that can be made easier to deal and cope with through the appropriate type of support.

My research

As part of my research I am hoping to support others in the same situation and invite you to join me in this endeavour by having your say in what would help you.

 If you are happy to help out then you can complete this online survey here by clicking the ‘start’ button at the bottom of the page.

Or you can go directly to the survey by clicking here 

Impact of MS on relationships

Posted on: May 20 2020

iStock-1125540923 low res.jpgIn this blog our Counsellor's answers your MS relationship questions for Mental Health Awareness Week 2020

As human beings, we have an instinctive need to be in relationship with other people. This includes those relationships we have with our family and friends, as well as people we are in contact within a more general sense. Relationships can be complex, some nourish us and bring warmth and others are more challenging. Sometimes, all can be difficult to navigate and it goes without saying that having a condition like MS can really complicate things! In this article, I hope to offer some practical suggestions around some of the most common difficulties people have shared around the impact of MS on their relationships.

I feel like such a let-down when it comes to socialising with my friends. I cancel plans or don’t engage fully because my fatigue and pain make it so difficult for me. What can I do?

It can be difficult to be fully present when your head feels foggy or you are struggling to think about anything apart from the pain you are feeling, physically or emotionally. Think about how it would be for you to communicate your difficulty with your friends and let them know what you need. Could it be that something less tiring would be better for you? Or having a boundary around the amount of time you can be with them might help. On the days when fatigue is higher, maybe consider talking to friends on the phone instead of physically meeting.

I get frustrated when people close to me want to talk about how I am or make an assumption about how I’m managing my emotions. This causes me to not want to be with people. How can I help this?

Communication is key here. It can be so difficult to allow yourself to feel vulnerable and talk about how you feel, especially if you’re feeling overwhelmed. Taking a deep breath and letting those closest to you know that things are difficult can open up that dialogue and if nothing else lets them know that you are finding things tough. Also, it can be useful to let people know what you need. Do you need regular hugs, space or is there something practical they can do to support you?

Talking to people feels too much for me right now and yet I know that people can’t read my mind. Is there anything else I can do to communicate?

Yes! You could try to write a letter if this is something you feel able to do or record a voice note to share with them. Others choose to represent their feelings through art or creativity, or music or song. Sometimes, people can really resonate with a poem or a blog that they’ve read. You could share this with your family or friends to let them understand how things are for you.

My relationship with my children has been impacted by my diagnosis and we don’t talk about my MS. What can I do?

Sometimes, friends and family do not want to ask any questions or bring up subjects which we may find upsetting. This can make it difficult to have an open dialogue. If you feel that it would be okay for you to answer any questions or talk about how things are for you, it can be useful to communicate that it is okay for them to ask.

MS-UK Counselling is here for anybody living with MS and offers space for you to explore your thoughts and feelings in a professional, supportive, and non-judgemental therapeutic space. You can register your interest for this service at www.ms-uk.org/counselling

Low mood, depression and MS

Posted on: May 14 2020

Capture.JPGThis Mental Health Awareness week the MS-UK Counselling team discuss how people living with multiple sclerosis (MS) can experience low mood and depression and what you can do about it

The mental health charity, MIND estimate that 1 in 4 people living in the UK will experience a mental health problem each year.

As counsellors at MS-UK, we are often asked what the difference is between low mood and depression.

Symptoms of low mood

  • Worry
  • Feeling anxious or a sense of panic
  • Sadness
  • Tiredness
  • Anger
  • Frustration
  • Low self-esteem

When does low mood turn into depression though?

The most important sign to recognise is if we notice that our low mood is starting to interfere drastically in our daily life and is lasting longer than a couple of weeks. This may be a sign of depression.

Depression

How we might feel and think

  • A sense of hopelessness
  • Feeling tired, lethargic or lacking in energy
  • No self-esteem or confidence
  • Isolated and unable to relate to other people
  • Feeling guilt and worthlessness
  • Being critical towards yourself
  • Feeling empty or numb
  • Have little please in life or have stopped enjoying the things you used to enjoy
  • Frequent restlessness, irritability or agitation
  • Have a sense of unreality
  • Sense of hopelessness and  despairing
  • Feelingly down, upset or tearful
  • Feeling suicidal

When we feel depressed we may behave in certain ways too.

How we might behave/physical bodily responses

  • Feeling tired all of the time, so not doing as much in our daily life
  • Loss of appetite which leads to weight loss or comfort eating leading to weight gain
  • Physical aches and pains that don’t correlate to physical activity
  • Loss of interest in sex
  • Avoiding social activities or events that you would usually enjoy
  • Neglecting ourselves: not washing frequently for example
  • Lack of concentration. For example, reading the newspaper or watching TV
  • Changes in sleeping patterns: sleeping more than usual/waking up a lot
  • Insomnia
  • Finding it difficult to make decisions
  • Difficulty speaking or thinking clearly
  • Smoking more, drinking more alcohol than usual or using drugs more than usual
  • Self-harming or suicidal behaviour

What causes depression?

There is much debate around this topic but there are three main perspectives around the causes of depression:

  1. Depression links to certain ways of unhelpful  thinking
  2. Depression is a result of negative life experiences
  3. Depression is caused by neuro-chemical or hormonal imbalances

Counsellors recognise that there is usually a combination of these three factors that link to why somebody may be depressed.  

MS and Depression

Depression can affect anybody. Having an MS diagnosis does not mean you will automatically become depressed.

However, around half of all MSers will experience depression at some point in their life. This is three times higher than the general population. This higher rate could be due to MS damaging nerves in the brain that affect mood but also because the person is living with a complex disease.

What can also be confusing is that some symptoms of depression are also symptoms of MS. This can be incredibly confusing for MSers as it can be difficult to ascertain what is causing them. For example, fatigue may be an MS symptom or it may be a symptom of depression. Or it could be both.

I think I might be depressed

If you think you may be depressed. It is nothing to be ashamed of. Below are a few suggestions that you may find helpful:

  • Talk to somebody you trust about how you’re feeling
  • Book an appointment with your GP
  • Contact the MS-UK Counselling service. This service is confidential and is open to people living with multiple sclerosis (MS), and is the only service of its kind available in the UK

MS-UK Counselling is here for anybody living with MS and offers space for you to explore your thoughts and feelings in a professional, supportive, and non-judgemental therapeutic space. You can register your interest for this service at www.ms-uk.org/counselling

How’s your sense of self?

Posted on: May 14 2020

iStock-157685437.jpgIt’s vital to look after your mental wellbeing as well as your physical. Here MS-UK counsellors explain the importance of your sense of self for Mental Health Awareness Week 2020

Psychotherapeutic research suggests that psychological difficulties are more common in people affected by multiple sclerosis (MS). This could be because MS symptoms may threaten your perception of your sense of self which could lead to a change in your mental health and wellbeing.

The American Psychologist Carl Rogers explored the idea of the sense of self. He explained this term as being the consistent set of beliefs and perceptions that somebody has about themselves. Our sense of self consists of all the values and ideas that characterise the 'I' and 'me'. For example: ‘Who am I?’, 'What is my purpose?' and 'What can I do?’

Our sense of self is a central element of our human experience on this earth. It influences not only our perception of ourselves but also that of the world around us and where we feel our place is within it. However, our sense of self does not always fit with reality and we can often see this in people with a negative sense of self.

 

Sense of self

 

Positive sense of self

 

Negative sense of self

  • You can recognise your strengths,  qualities and potential

 

  • You feel comfortable addressing your limitations or shortcomings, viewing this as normal life

 

 

  • You will find yourself focusing on your weaknesses or faults

 

  • You will often downplay your strengths, qualities and potential

 

  • You will often focus on and vocalise your shortcomings or failures

 

 

Sometimes, MS may impact on a person’s sense of self because the way they view themselves may have changed from their pre-MS self. What we as practitioners may see is that a positive sense of self is now being replaced by a negative sense of self.

However, what is important to note is that living with MS does not automatically bring into question a person’s sense of self. But if it does, it can often be the degree to which MS symptoms impact upon your ability to fulfil roles integral to your pre-MS self that may have the greatest re-defining impact on it. Examples of this could be:

Work 

Have you had to reduce hours at work, change your role or leave your job?

Relationship

You may need to rely on others more than you used to which can lead to feeling a loss of independence, choice and control.

Hobbies and interests

You may no longer be able to participate in, be asked to take part in or want to keep up hobbies and interests because of the physical, emotional or cognitive changes you’re experiencing.  

Social activities

Do you have to plan social events in advance instead of being spontaneous? You may be unable to attend social occasions like you used to or not be invited to these things as much.

These examples above are not meant as a definitive list but provide insight into some of the areas in an MSer’s life where you may notice change has occurred, which at times can bring into question your sense of self.

What can I do?

Some people find journaling their thoughts to be helpful. This can help you to reflect upon negative thoughts, and realise that just because you are thinking them, this doesn’t mean that they are true. It can also allow you to see if there is a pattern to your negative thinking, and perhaps if there are particular situations in your life that are triggering them.

Practising mindfulness can be helpful to bring your mind into the here and now and stop you catastrophizing. You can find a course through the Mindfulness Network’s website www.mindfulness-network.org

If you are ready to talk to somebody, medical and allied health professionals can support you by assessing which symptoms affect you most and for example, help with symptom management or where possible, help you reconnect with valued interests, roles and activities, in an adapted and more accessible way. Your first port of call is your GP.

MS-UK Counselling is here for anybody living with MS and offers space for you to explore your thoughts and feelings in a professional, supportive, and non-judgemental therapeutic space. You can register your interest for this service at www.ms-uk.org/counselling

Try this caponata for National Vegetarian Week!

Posted on: May 12 2020

This is a fresh and vibrant Italian dish made with capers and a splash of the caper brine to create a zingy plate of food that packs a punch, and costs less than £1 per portion!

veg.png

Ingredients

¼ aubergine, roughly diced

½ red onion, roughly sliced 1 garlic clove, sliced

Pinch of dried oregano

1 tomato, roughly chopped Small handful of capers

 

Big splash of liquid from the caper jar

½ mug of couscous

½ mug of boiling water

Handful of spinach

Olive oil

Salt and pepper

 

Method

Start by pan-frying the aubergine in a dry pan over a medium heat for a few minutes until it starts to colour. Then add a splash of olive oil, the onion, garlic and a pinch of oregano. Fry for a few minutes until the garlic starts to colour, then add the tomato. Continue frying for a few more minutes before adding the capers and a big splash of the caper brine.

Simmer for a couple of minutes, remove from the heat, then add a handful of spinach, allowing it to wilt in the heat of the pan, and season to taste.

In a bowl, mix together the couscous, a pinch of salt and pepper and the boiling water. Leave to stand for a few minutes then fluff with a fork and serve with the caponata.

book resized_0.jpg

Taken from Miguel Barclay's Meat-Free One Pound Meals (Headline Home)

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