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'Just because you are on medication doesn’t mean you can’t breastfeed'

Posted on: July 28 2021

World Breastfeeding Week (1-7 August) is just around the corner and we have a piece from Elissa Benson, National Childbirth Trust, Breastfeeding Counsellor and Chartered Neuro Physio talks breastfeeding and MS. 

Elissa Benson.jpg
Elissa Benson, Breastfeeding Counsellor
and Chartered Neuro Physio

There is a lot of information already out there in the public domain that can inform a mother when it comes to making a decision about breastfeeding and there is no reason why a mother with multiple sclerosis (MS) shouldn’t breastfeed if she chooses to. Her MS isn’t going to affect her milk supply and she isn’t going to transmit it to the baby. It’s also worth noting that some research shows that MS mothers who exclusively breastfeed are almost half as likely to suffer a postpartum relapse.

A matter of medication?

Some medications are not intended for use when breastfeeding. The best thing to do is consult with your neurologist or MS nurse, who will be able to advise you based on your MS. Some women opt to delay using medication so they can breastfeed, or some women feel the medication allows them to look after their baby and that’s the priority for them. Some mothers express milk in advance, so they can feed their baby while taking an intensive five day course of steroids. They do have to continue to express throughout those five days to maintain their milk flow and to be able to feed baby afterwards. It’s a very individual choice, it depends on the medication you’re taking and the stage of your condition at that moment in time. Just because you are on medication doesn’t mean you can’t breastfeed, but there will be decisions to make.

To find out more information about which medications are, or are not compatible with breastfeeding by visiting the Breastfeeding Network website.

Don’t be too hard on yourself

Under normal circumstances mothers have to make all kinds of decisions about breastfeeding, and for some mothers with MS their options are more limited, so actually dealing with how you feel about that is really important. That’s where we, as breastfeeding counsellors, come in. We can help mothers explore their options and how they feel about it. It’s an aspect that can often be lost because when you are dealing with the practicalities you can forget to deal with feelings.

Minimise stress

Being a new mother is stressful for anyone and if you have concerns over feeding your baby, that can add to the stress. It’s part of our role to help mothers manage their situation so that it can be less stressful and doesn’t make them worse. We all know that stress can exacerbate MS.

Find the right position to feed your baby breastfeeding.JPG

A further challenge may be a woman’s physical ability to position themselves properly and support their baby’s weight through a feed. Some women might have a loss of core control, which can be caused by MS but also because they have just been pregnant. Putting together these factors could limit their postural control which might affect the positions they are able to effectively use to feed their baby.

Similarly, arm strength or tone may be an issue. Do they have the arm strength to support their baby? Do they have tonal issues that might effect that? And again, that is why some individual support from someone experienced would be really useful.

Laid back breastfeeding, using a baby led approach may be a good option to explore.  Basically instead of the mother trying to attach the baby, they just let the baby do it themselves because they are pre-programmed to do it. There are lots of different positions to try, but if you are able to access that individual support it can help you find a position that works for you and your baby.

Dealing with fatigue

Fatigue is a big issue for any new mother, but having MS can make it a lot worse. Having had a baby, you are entering a new phase in your life where you are going to be sleep deprived and your normal sleep pattern disrupted, meanwhile your body is also trying to recover from pregnancy and birth. Managing fatigue is very important, but it is also worth knowing that the hormones that are released when you’re breastfeeding are the ones that help your body return to its pre-pregnancy state.

Often women tend to view feeding baby as a chore and therefore tiring, but actually if you can get a good position for you and baby, if you can get them to latch themselves, you can use it as an opportunity to sit and rest. New-borns feed 8-12 times every 24 hours, so it’s much better if mothers associate feeding baby with resting. This way of looking at it helps with the physiological part of fatigue and then it’s just about the practicalities – making sure you’ve poured yourself a drink, you’ve got your phone and the remote control – and then you can stay sat down. It’s also about managing the support network you have around you, so you can prioritise breastfeeding in those early days.

Managing night feeds could mean that mum goes to bed and when baby needs feeding, their partner, mother or whoever is there to support, gets up and brings the baby to mum, she feeds and then they put settle the baby back down. That way mum doesn’t even need to move, so it’s a really practical solution to this sort of issue.

Information

To discuss your breastfeeding options and find an NCT drop-in session, you can call the NCT Breastfeeding Counsellors Helpline on 0300 330 0700, or visit www.nct.org.uk

Further reading

Breastfeeding positions

Drugs in breast milk - is it safe? 

 

'I was always thinking about my MS inspired design ideas'

Posted on: July 26 2021

Kirsty is a designer who received her diagnosis of multiple sclerosis (MS) whilst completing her degree. Here, she shares her story, the ways she coped with her diagnosis and how it has influenced her work. Kirsty Stevens Artist Image.jpg

Please tell us a bit about your diagnosis – what were your symptoms and what happened?

I was in my third year of a Jewellery and Metalwork Honours Degree at Duncan of Jordanstone Art School in Dundee when I had my first symptoms. My left eye became painful to move left and right and my vision in that eye deteriorated quite rapidly until I couldn’t see anything. Also my gait was way off, I couldn’t walk in a straight line and I was so tired. These symptoms escalated and I was admitted to hospital, I didn’t really know what was going on, I was in a dream like state, which I am quite thankful for as I can’t even remember having a lumbar puncture! MS was mentioned as a possibility at this time but the doctors seemed pretty sure it was another condition called A.D.E.M, which is like MS but it just hits you once and never comes back, so I didn’t even consider it would be MS! I was then diagnosed about six months later after experiencing slightly blurred vision, twitchy nerves and having a couple of MRI scans. Even though MS had been mentioned I really didn’t expect it, so it came as a massive shock!

Tell us about your design work – what do you make and how did you come by the idea to do this? 

I took a year out of my studies when I was diagnosed to come to terms with it all. During that year, I learned that living with MS was manageable - just because I had been given this ‘chronically ill’ label it didn’t mean my life was going to change instantly! I also learned that MS was so misunderstood, yes I was still learning about it myself, but people didn’t know anything about it or had misconceptions about it. So, when I returned to uni I decided to use MS as the inspiration for my final years' work. I wanted to make MS visible through my degree show pieces and share my experiences of living with MS in a bold way.

My work had such a great response from the public and my peers I knew I had to continue raising MS awareness this way as it opens conversations about MS in a new and innovative way. I developed my creative business, Charcot years later as I ran off to London after art school for a few years to intern for designers and design labels which was a great experience, but I was always thinking about my MS inspired design ideas. Named after the ‘Father of Neurology’ Jean-Martin Charcot, ‘Charcot’ is my surface pattern design label where I use my own MRI scans and lesions shapes, the damaged caused by MS, to design prints and patterns which are then printed or etched on to various materials to make this invisible illness visible in the most fabulous way.

Has your work improved your experience of living with MS?

My work has definitely improved my experience of living with MS as at first, I was embarrassed to tell people that I had MS as it made them feel awkward! But now I have no trouble telling people and sharing how I have used it as a positive and raise awareness in an exciting way!

What kind of feedback have you had for your work?

I have received incredible feedback for my work, it really has been more than I could have ever imagined! I have the continued support from the MS community, which means so much and I love how it engages people that don’t have MS and that might not even know what it is, I really love taking it to new audiences! My work has also taken me to China to represent Dundee UNESCO City of design at the first ever Design Week in Shenzhen and at the same time I was announced as the first Design Champion for V&A Dundee, the first design museum in Scotland, which was an incredible honour! I have also leased work internationally and collaborated with pharma and digital imaging companies.

How was lockdown for you, what changed and how did you cope? Kirsty Stevens Head shot 2.jpg

Lockdown has been interesting!? I work from a home studio so it wasn’t all that different but my years plans and potential work opportunities had to be scrapped, but the time has allowed me to focus on myself and even re-evaluate what Charcot is all about! I was supposed to be starting a new medication when it all kicked off but that was postponed, which I was thankful for as it is an immunosuppressant drug, which would weaken my immune system which isn’t ideal amid a pandemic! Also over the past few months I have noticed more symptoms and my legs are pretty wonky! So, I am being as active as possible to regain strength and feel more like myself! The online leg work outs from MS UK, have been great!

What advice would you give to someone who is newly diagnosed?

I would say, yes, it is a scary and daunting thing to be told but it doesn’t mean that’s it for you! Cliched as it sounds take each day as it comes, do what works for you and enjoy every bit! It has taken me my 13 years of living with MS to realise this, so just go for it!

Essential oils for MS

Posted on: June 22 2021

This week (21-27 June) is World Wellbeing Week and here, aromatherapy expert Joanne Hunt explains how oils can boost wellbeing when you have multiple sclerosis (MS). iStock-1140934863.jpg

Over the last few years I have worked with an increasing number of clients that have MS. As you know, the condition can come with issues such as fatigue, sleep, difficulty relaxing, joint mobility, and stress, to name a few. These different symptoms can come and go. My clients have found essential oils to be really helpful at different times. These oils can support the feeling of wellbeing and wellness. One thing I would like to state is that essential oils are very pure, and you only ever need one drop at a time. Please ensure you are being supported by someone that can be with you every step of the way, such as a qualified aromatherapist.

Oils I recommend
You can use essential oils at home to helppromote wellbeing. Here are some of my favourites.
For pain lavender, marjoram, roman chamomile, clary sage, lemongrass, peppermint, ginger or black pepper. You can add one drop to any body lotion or carrier oil and rub into the area of concern, or add to the general spine area.
For stress frankincense, wild orange, bergamot, grapefruit, ylang ylang, sandalwood, neroli, lavender, tangerine or jasmine. You can add a drop to your wrists or the back of your neck, or add a drop in a diffuser.

For sleep - Lavender, serenity or cedarwood. Add a drop to any cream and rub onto the heels of your feet before bed. You can also add a drop to your wrists or the back of your neck one hour before sleep.
For sense of wellbeing - Frankincense, lavender, rose, green mandarin or neroli. You can add a drop to your wrists or the back of your neck or add a drop to a diffuser.
For headaches - Peppermint – rub one drop onto your fingertips and massage into your hairline. Make sure you wash your hands as it could sting if you rub your eyes.
For circulation - Rosemary, ginger, black or pink pepper, peppermint or lemongrass. Add one drop to any body lotion or carrier oil and rubbing onto the area of concern, or adding to the spine area.
For nausea - Peppermint or spearmint. Add a drop to a carrier oil or to a diffuser.

For more information and to buy oils, visit Oils by Jo.

If you liked this, read: Multiple sclerosis - I do it my way 

Mums Like Us for International Women's Day

Posted on: March 05 2021

Sally Darby, founder of support group Mums Like UsMSer Sally Darby set up an online network for disabled mothers in 2017. Here she shares her journey and explains why the conversation around disabled parenting needs to change.

I was diagnosed with multiple sclerosis (MS) in 2010 but my symptoms started in 2008. It began with optic neuritis which has left me severely and permanently visually impaired. At the time, I was told I might have a brain tumour. I was so relieved to discover that wasn’t the case. I was diagnosed after a second relapse involving numbness and tingling in my legs, as well as bladder dysfunction. Once the process started, things moved fast. I had an MRI and a lumbar puncture and was given the diagnosis within a couple of weeks. 

Of course I was shaken. It’s a huge thing to take on board. I was getting married in a few months and I became fixated on getting through that day whilst fully mobile. I’m glad I walked down the aisle and danced the night away as that would certainly not be my reality now! I am very well supported by wonderful friends and family. My now husband was my rock. But yes, it was a hard time. I once heard someone say MS is not a death sentence, but it is a life sentence. I took that on. 

Gradually, I started to accept the hand I had been dealt and live my life to the full with MS. Today, my condition weaves its way through every aspect of my life. It is integral to my being. I don’t believe I can separate myself from it, but I try my best to accommodate it, and work with it to provide the best outcomes for me and my family. 

Feeling isolated

In 2017, I was a young mum with two beautiful girls, both of whom had been born after my multiple sclerosis (MS) diagnosis, and I felt extremely lucky. But I had never met or even spoken to another disabled mum. I felt like the only one in the world! Being a new mum can be isolating and lonely for anyone, but when the additional challenges of disability are thrown in to the mix, it can feel pretty desperate. Since becoming pregnant with my eldest in 2012 I had felt unprepared, isolated and judged. I had done endless Google searches looking for a community of mums who shared my experiences but found nothing.

Despite this, I had a strong feeling that I was not the only one who was feeling like this, and that creating a community of mums who had disabilities would benefit others, too. When I set up the Mums Like Us Facebook group I quickly realised I was right. The group grew quickly and many mums expressed their relief at finding somewhere they could share their feelings and experiences with other mothers who really got it. So I decided to launch the website. 

We are simply bringing mums together in a safe, non-judgemental community where they can support and advise each other without fear of judgement. That was the goal at the start, and Mums Like Us does it every day. 

Disability and motherhood

There isn’t much conversation about motherhood and disability, and I think it’s largely because of representation. I follow lots of brilliant disabled mums on social media, such as @nina_tame on Instagram, who talks about her life as a disabled woman and mother with unapologetic pride, confidence and ability, whilst highlighting the ableism that still very much affects her. But women like her are only just starting to make their way in to the mothering mainstream.

It is also, in my opinion, because the world of parenting is not geared up for disabled people. High street brands don't cater for the needs of disabled parents. This results in people having to pay huge amounts of money, or get charitable support, to have very simply adapted items, such as accessible cots or push chairs.

Schools, libraries and play groups are often difficult, and sometimes impossible, for disabled people to access. As a result of all this, disabled mothers are all too often left out of the conversation around parenting. Often anti-natal and post-natal care providers in the UK are ill-equipped to support new mums with very specialist requirements. They frequently have to figure it all out themselves. This is an added challenge at an already overwhelming time. Sally and her two daughters

Mum shaming

As I have become more confident, through my work with Mums Like Us, I have thrown off the self-judgement (mostly!) so I have stopped worrying about what others may or may not think of my parenting. I am bringing up my girls in the best way I can. I am doing my best, as we all are, and although my parenting has to be different because of my disability, it doesn't have to be inferior. Once you have this confidence it’s easier to block out any shaming. 

Mums to be

If you have a disability, and are thinking of having a child, join Mums Like Us! On our Facebook group you can get advice from mums who have the same condition as you. Speaking to others and hearing their stories is incredibly empowering and insightful. They can also offer you invaluable practical advice.

I spoke at length to my MS nurses and neurologist before I decided to try and get pregnant. I would advise others to speak with their medical professionals. It will help them to be prepared for what is to come through the pregnancy the challenges they may face with a new baby. Above all, though, I would say no disabled woman is alone – you can do it and you will be amazing! It takes planning, and forethought, and adapting, but it is totally doable. Not only that, it’s empowering, and it gives you a reason to be grateful for and proud of your body and it’s incredible achievements – however much you feel it may have let you down in the past. 

My vision for progress

I would like to see equipment for disabled mums sold in major high-street retailers. I would like to see them in parenting magazines and on websites. I would like mums like me to feel seen, respected and above all I would like them to feel they are not judged for parenting in their own unique and special way. This is part of a much wider societal shift that is needed, a shift that stops seeing ‘disabled’ as an insult and sees it as a neutral term. We need to change society and its attitudes so disabled parents can be CEOs of those high street brands, putting our needs front and centre. We have a long way to go, but we are moving in the right direction! 

Visit www.mumslikeus.org to connect to other disabled parents and to find product lists which may be useful to new disabled mothers.

 

Order your free set of kindness postcards today

Posted on: February 16 2021

To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.

Order your free pack now

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Why are we celebrating this day?

In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.

Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!

Find out more about our research

Discover more

There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...

Be Kind Movement

Kindness UK

Random Acts of Kindness Foundation

Small Acts of Kindness

The Kindness Offensive

"There have been amazing opportunities that wouldn’t have arisen if I didn’t have MS"

Posted on: February 08 2021

HL_Metamorphosis_13.jpgPhotographer Hannah Laycock on the opportunities MS has opened up

When I was diagnosed with multiple sclerosis (MS) I was living in London. I’d been under quite a bit of stress in the lead up. I’d started playing squash again after not playing since I was a teenager, and the next day after a game, I felt a pain under my right shoulder blade, which progressed to numbness across my chest and right side.

My friend who is a massage therapist thought maybe I’d trapped a nerve. But the numbness moved around my body. My GP did some blood tests which came back normal. But I was worried because my dad had been diagnosed with motor neuron disease in 2008. As soon as I told my doctor this, they referred me to King’s College for an MRI scan.

Big shock

By the time I’d got my results, my symptoms had really died down. I had concluded that I probably didn’t have motor neuron disease, because symptoms don’t come and go like that. So on the day of my results, I cycled from my workplace in Chadwell to King’s College. It was a big shock when the neurologist showed me the scans and pointed out areas on my spinal cord and brain.  

Focas_H Laycock_01.jpgI went straight to a friend’s house and fell to pieces. I was so confused and really went downhill and had another relapse. I then had a bad experience with a neurologist and ended up putting in a complaint, which drove my stress levels up further.

I found it really hard to accept, especially because of my dad having motor neuron disease. How could both of us have huge health conditions? For a while I’d been considering moving back to the north east of Scotland due to my dad being ill and, while I loved living in London, and had a lot of friends there, I had no family nearby and it was time to think about the future. My gut instinct was to move back home.

My parents live in Forres but I chose to move to Glasgow as it is the most similar to London in terms of the art scene and city life. But it wasn’t really for me. While I was there I had an interview for the Glasgow School of Art, but at their Highland campus, in the town that I grew up in. They created a role for me in photography and I ended up moving back with my parents for a bit.

Frustrations and opportunities

The uncertainty of my condition does trouble me. But, while I get frustrated with my symptoms on a daily basis, having MS had meant I’ve met lots of people I wouldn’t have normally. There have been amazing commissions and opportunities that wouldn’t have arisen if I didn’t have MS. In 2019 I was invited to commission a set of portraits of others with MS for the drug company Novartis. This was a dream job! I met lots of people at all different stages of their condition. The lived experiences you share connects you on a greater level. You share a level of understanding. I’d love to do more work like that.

I think having a condition like MS can lead to a lot of self-growth and adaptation skills. I was heavily influenced by witnessing what my dad went through. He was inspiring and positive throughout some really testing times, and that’s helped my own mindset and how I look at challenges.

My dad passed away in December 2019. He stopped taking in food and water himself. It’s been a challenging time because we felt that he was finally at piece and a new chapter was about to start, then lockdown happened.

My self-care has slipped a bit during this latest lockdown. I was good at the beginning, doing yoga at home and stuff. But I’m still processing my dad’s death.

My creative work is so important to me. I’d say to anyone newly diagnosed, doing something creative is a really good way to process something like a diagnosis. Don’t worry about the final outcome, it’s the process that’s the important part. It could be painting, dancing, pottery – anything. It just gets rid of some of the mental load. It can really help reduce stress, which of course is important for MS. Don’t worry about the results, just channel that energy!

This interview appeared originally in New Pathways magazine. To subscribe for just £1.66 a month, sunscribe here or give us a call on 01206 226500.

 

 

 

Dealing with uncertainty

Posted on: January 08 2021

Pic - blog.jpgMS-UK Counsellor Jas Sembhi explains a simple way to cope with worries

Something that comes up a lot in counselling sessions is people saying that they are struggling to manage the uncertainty about their future living with MS (multiple sclerosis). The uncertainty may be due to not knowing how long their present symptoms might last, when another relapse might occur, how long the relapse may last or worries about ‘what if the symptoms do not go away if I have another relapse?’ Thinking and worrying about the ‘what ifs’ can affect life in the present. The worry may be so consuming that person finds they spend less time focusing on what is happening right now.

Write it down

One of the ways I work with people in dealing with uncertainty is by getting them to make a list of all the things that they are uncertain about. We can do this together in the session as it might help to talk this through with someone. Or they may wish to go away and do this after the session, and it is something we can pick up on the following week. The reason I ask to make a physical list is that sometimes it is easier to focus on what we have written down, it will be there for us to refer back to when needed as we work through it.

Once we have this list, we then work on making two columns. One for the things that can be controlled and planned for, and one for those that cannot. For the list of things that cannot be controlled or planned for, together we work on self-compassion and soothing emotions that the client would like to manage.

Regaining control

One way we work on fears about an uncertain future is by clients starting to remind themselves that ‘this is something not in my control right now, I cannot always control what may or may not happen in the future, but I can start to focus on what I am able to control and plan for.’ Hopefully, by being able to soothe fears with this kind of self-talk, a person can use this new way of thinking when the worries of the ‘what if’ creep in. Clients can start to re-train their mind and bring back their focus to what they have spoken about in the second column – the things they can control. To be able to regain control and then start making plans can be empowering and allow the focus to be on ‘I can’ instead of ‘I cannot’.

For more articles like this, subscribe to New Pathways magazine Subscribe to New Pathways

Reasonable adjustments and MS

Posted on: November 24 2020

Rebecca Armstrong2this one.jpgMSer and HR expert Rebecca Armstrong explains how to ask for reasonable adjustments when returning to work

One of the topics that comes up regularly in the multiple sclerosis (MS) and work community is that of reasonable adjustments. As we may soon be re-entering the world of work the topic is very much alive and well, so in this column I am focusing on how to request a reasonable adjustment in the current working climate.

I think it is important to say that one of the more positive impacts of the last few months has been the fact that, for many jobs, home working has been a necessity and, on the whole, has worked. This has challenged those employers who might have been previously reluctant to think about things differently and this undoubtedly will open up doors and opportunities for more flexible working as we move forward.

Returning to work might be needed for the economy and even at an individual level for mental health, but that doesn’t negate the fact that it can be a very stressful and scary time, especially when you have an underlying condition such as MS. Employers are required by law to complete a Covid risk assessment and within that they need to consider how to keep their vulnerable employees as safe as possible. You may feel that it doesn’t fully consider your individual needs and feelings and that is where requesting a reasonable adjustment comes in.

Reasonable adjustments are there to help make work accessible for people who have a disability. They have a very broad scope and you can ask for what will make work feel safer for you. This could include working from home, flexible start and finish times (to avoid busy times), relocation of your desk, the type of work you do including your interaction with the public and of course some adjustments that may not be linked to Covid such as being situated near a fan or having dictation software. Adjustments can be permanent changes or temporary measures during a challenging period and you can also ask for them to be put in place on a trial basis if either you or your employer are unsure about how they would work in practice.

If you want to request an adjustment here are some top tips

  • Think about what you need and why that would be helpful. Remember your employer is unlikely to understand MS fully and therefore including why something will help you can be the difference between getting it agreed or not.
  • Think about the impact on your job and how you will continue to manage this. Your employer will consider whether agreeing an adjustment means that work delivery will suffer.
  • Put your request in writing asking for what you need, for how long and what additional information that they might need.
  • Consider asking your MS team to support your request with a letter or asking for a referral to occupational health to support your application.
  • If the request is declined, ask for the reasons why so you can consider how to respond and whether to appeal.

Rebecca writes a regular column in New Pathways magazine. Fancy receiving every issue through your letterbox? Keep up with all the latest news and views in the world of MS by subscribing today!  Subscribe to New Pathways

How do you cope with MS?

Posted on: November 24 2020

hannah resized.pngResearch student Hannah Morris looks at how your coping strategy influences your quality of life when you have MS

Having a long-term condition is a lot to cope with, and as someone with multiple sclerosis (MS), this is something I’m very aware of. But often, how we go about coping and what style we use has a big influence on our overall quality of life.

What is coping?

Coping refers to an ongoing process of thoughts, emotions and behaviours relating to how a person deals with stressors. Different people use different coping methods in different situations, but ultimately the aim is to solve a problem and return to the original optimal functioning state.

The coping style we chose comes as a result of how we interpret a stressful situation to begin with. That is, we ask ourselves questions like

  • Do I have any control over the situation? If so, what can I control?
  • What has been my experience of this situation before?
  • Do I have the ability to manage the situation?
  • What resources can I draw upon to make things easier? 

These types of questions usually guide the coping strategy that we will follow through with.

What are the types of coping?

There are many different coping styles, but they can all be broadly divided into two types, problem-focused and emotion-focused.

Problem-focused coping. This type of coping aims to deal directly with the cause of the stressor in practical ways.

Examples of this include gathering information, seeking practical support, considering solutions, evaluating pros and cons and making plans.

The advantages of this approach are that it removes the stressor and deals with the root cause and, therefore, provides a long-term solution.

On the other hand, there are situations where a problem-focused approach is not possible. For example, with MS, there is little we can do to control many elements of the condition and therefore tackling the root cause is often not possible.

Emotion-focused coping. This type of coping is more reactive and seeks to manage and reduce the negative emotions felt as a result of the stressful situation rather than the problem itself. Some types of emotion-focused coping are helpful and others are not.

Examples of this type of coping include seeking emotional support, acceptance, cognitive restructuring, positive reinterpretation, psychological disengagement, distraction, or turning to drugs or alcohol.

The advantages of emotion-focused coping is that they are accessible when the source of stress is out of a person’s control.

However, emotion-focused coping has been linked to poorer psychological wellbeing in people with MS, perhaps as it doesn’t deal with the root cause of the problem or provide a long-term solution, especially in the case where the less helpful methods such as distraction and disengagement are used.

My coping methods

During my first relapse after diagnosis I relied heavily on the less helpful types of emotion-focused coping. Until this point, my MS was very much silent and I was convinced I probably just had clinically isolated syndrome. So some four years later I had noticed the bottoms of my feet going numb, but carried on with life trying to keep distracted and ignore the fact that the numbness was slowly creeping up to my thighs.

In denial, I hadn’t sought any help. I didn’t even tell my husband to begin with, but he became suspicious as this once invisible symptom was becoming more outwardly obvious. He encouraged me to call my MS nurse, so I did, but, of course, I played it all down. The consequences of this meant that when I finally accepted that I was having a relapse and I did have relapsing remitting MS, I had to go through the same experiences and it was like being diagnosed all over again. It felt like the world was caving in on me as I went through the process of acceptance all over again.

Over time, I’ve been able to use more helpful emotion-focused coping by focusing on the benefits of having MS (yes, there are some!). It strengthened my relationship with my husband and family, it’s given me a passion for the work I do, helping others like me, it’s given me a sense of empathy for people with disabilities generally, and it’s made me appreciate the good days and the blessings in my life. These are all experiences I would not have had without my diagnosis and have made it a lot easier to live with MS.

I’ve also found myself able to use more problem-focused approaches in recent times, too. Due to pregnancy, I’ve been off treatment for over a year now and I’m anxious that I am now vulnerable to relapse, as is usual post-partum for me. I know this is a reminder that I do have MS and there are times that I still struggle to accept that, but I also need to make a decision about treatment and have been comfortable enough to weigh up all my options, speak to my loved ones and my MS team about it and make an informed decision about what’s best for me.

What style are you?

How do you react to your MS? What is your first reaction when you experience a difficulty as a result of your MS?

1. Do you call a member of your MS team and seek practical support? Do you think about the possible ways you can deal with the situation? Do you consider what has and hasn’t worked before?

Or

2. Do you prefer to withdraw and stay alone? Distract yourself with other things? Find positives in the situation? Seek emotional support from friends and family?

If you answered yes to the questions in option one, then you are using problem-focused coping. If you answered yes to the questions in option two, then you are using emotion-focused coping. You might have even found yourself using a mixture of both.

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Keeping safe when shielding ends

Posted on: July 29 2020

MSer and HR expert Rebecca Armstrong has advice on returning to work for those who have been shielding

Rebecca Armstrong2this one.jpgEveryone with multiple sclerosis (MS) is classed as vulnerable under the COVID-19 government guidance however, some people with MS have been considered extremely vulnerable and for the past three to four months have been shielding. The government has now decided that people should stop shielding from 31 July. For many people this is an extremely stressful time as the expectation shifts towards getting back to work. Firstly, we must remember that even though shielding is ending, the virus is still active in the country and people with MS are classed as vulnerable.

Duty of care

Employers have a duty of care for the wellbeing of their employees and are obligated under The Equality Act 2010 to make reasonable adjustments. Furthermore, the COVID-19 guidance requires that a full risk assessment is completed within every business (and where there are more than five people, this needs to be a written assessment). Within this, consideration needs to be made regarding how all staff will be kept as safe as possible, including those who are vulnerable. In addition to this, employers should be holding individual conversations with those returning from shielding to support this transition. This might include

  • Discussion on how you are feeling about returning to work
  • Sharing with you the risk assessment to give you a clear picture of how risk is being managed within the business
  • Discussion about what else can be done to support you, for example continuing to work from home where this is possible, temporarily adjusting your role so you can be in the safest job possible, and how they will support you to stringently maintain social distancing. This should be a conversation so you can ask questions, share your ideas and hear the company’s plans
  • Building on the above point, what reasonable adjustments need to be agreed to optimise your safety? This could involve, for example, changing hours so you can be dropped off and picked up by a family member so you do not need to travel on public transport

This is a challenging time for everyone. Employers are also navigating new guidance and working through how to support people. Discussion is the key to making this work and finding a way forward. Ultimately, safety is the most important part and, in line with government guidance at the time, employers need to ensure all measures are put in place. If you feel this isn’t the case and you are being put at unnecessary or unreasonable risk you can refuse to work, however, where possible, it is better to discuss this and try to resolve it.

 

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