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Sleep tight

Posted on: October 13 2021

iStock-1182205974_1.jpgThis article is taken from the latest issue of New Pathways magazine. To subscribe click here

 

Wake up refreshed with this advice for a better sleep

We all struggle to sleep from time to time. But getting a good night’s kip is essential for everyone’s health, and especially so when you live with a chronic condition such as multiple sclerosis (MS). Try this tips for a better night’s rest.

The importance of light

Most people would agree they sleep easier in the dark. Just think how easily morning light in the summer months can cause you to wake up at 5am unable to get back to sleep. This is due to your circadian rhythm, otherwise known as your sleep-wake cycle, and it’s directly controlled by sunlight. “Your sleep-wake cycle influences your brain processes and hormone production, making or breaking your quality of rest,” says sleep expert Christine Lapp (www.sleepjunkie.com). “At night, your brain senses a lack of sunlight, triggering the production of melatonin, a sleep-inducing hormone. In the mornings when the sun rises, it tells your brain it’s time to wake up – sunlight hinders melatonin production and keeps your body energised.”

To help re-set your circadian rhythm, try and get as much early-morning sunlight (though easier said than done in the UK sometimes) as soon as you wake up. “This can include going outside for a quick stroll or merely enjoying breakfast in a sunny spot,” says Christine. “At night, keeping lights low and eliminating blue-light from your bedroom can prove powerful in helping you fall asleep faster.”

Blue light, emitted from electronic devices like smart phones, tablets and other screens, tricks your brain into thinking it’s earlier in the day, and so hinders melatonin production. And if all you wake up to is a dank sky and dark clouds, you can try faking it. “Sunlight alarms are becoming more and more popular as they simulate sunrise and sunset on a small scale. These strengthen your sleep-wake cycle and allow you to start your day a more peaceful way,” says Christine. “In more severe cases, a lightbox is required for light therapy. In these instances, it’s suggested individuals sit in front of a bright light for 30 to 40 minutes after waking up in the mornings to keep their internal clock in sync with night and day.”

No napping

When you have MS, fatigue can be very real and the need to nap is overwhelming. If you have to take a nap, try to keep it earlier in the day so that it doesn’t interfere with your nighttime rest. “Sleep specialists agree the most opportune time to squeeze in some mid-day shut-eye is around five or six hours after you wake up. However, that’s not always possible on a day-to-day basis,” says Christine. “To play it safe, always plan your naps at least five hours before bedtime. Taking a nap anytime in the five hours leading up to your bedtime can make it harder to fall, or stay, asleep.”

Ditch the drink

It is commonly believed that alcohol helps you sleep, but it actually disrupts it. “The key drawback of consuming alcohol before bed is the reduction of rapid eye movement (or REM) during sleep,” says pharmacist Carolina Goncalves from Pharmica (www.pharmica.co.uk). “REM occurs 90 into your sleep and at this stage you usually have dreams. Therefore, REM disruptions caused by alcohol consumption can lead to lower quality of sleep, leading to potential issues with drowsiness and poor concentration during the daytime.” Experts recommend you have alcohol no later than four hours before your bedtime.

Eat right

Certain foods can help send you to the land of nod. These include poultry, which contains an amino acid called tryptophan. It helps your body make the feel-good hormone serotonin, which then converts to melatonin, the hormone that makes you sleep.

Yoghurt, cheese and milk are good for calcium, which helps process the hormones that help you sleep, melatonin and tryptophan. Bananas are high in potassium which helps to keep you asleep throughout the night. They also have tryptophan and magnesium which are natural sedatives. 

Whole grains encourage insulin production that result in tryptophan activity in the brain. They also have magnesium which is said to help you stay asleep. When magnesium levels are too low, you are more likely to wake up during the night.

Avoiding caffeine in the afternoon can make a huge difference to your ability to fall asleep come nighttime, too.

Mattress matters

To fall asleep and stay asleep, your bedroom needs to be serene and comfortable. And comfort starts with the bed itself. “Living with MS can cause stresses and strains to the muscles and joints in your body,” says Carl Walsh, sleep specialist at Bed Guru (www.bedguru.co.uk). “One of the biggest changes you can make to support your body and ease the stress is to swap out your mattress. 

“Pocket-sprung mattresses adapt to your body shape whilst you sleep, relieving the pressure on your back and joints. Having adequate spinal support is one of the most important aspects of a comfortable night’s sleep. When your back is in a compromising position, your muscles will tighten, causing stress and pain. Pocket sprung mattresses help to reduce this stress, giving you a comfortable night’s sleep. Alternatively, try an orthopaedic or memory foam mattress.

“Similarly, place one or two pillows between your knees to reduce the pressure on your spine. If you sleep on your back, you can place a pillow under your knees to keep your back straight and comfortably supported. Or purchase a mattress topper as they provide great support, without the need to buy a new mattress. They have been specially designed to provide extra comfort and increased support for your spine,” says Carl.

Getting a good night’s sleep makes a world of difference to how you feel, and with a few tweaks, hopefully you’ll get your eight hours.

A beginner’s guide to Spoon Theory

Posted on: October 07 2021

You may be wondering what the term ‘spoon theory’ means, and in this blog we’ll explain what it is and how it is useful for people living with a long-term health condition, such as multiple sclerosis (MS) and those around them. iStock-1182205974_0.jpg

Chronic conditions can come with symptoms that include fatigue, and with MS there are two types of fatigue. Primary fatigue is caused by the demyelination that occurs in the central nervous system, slowing down the messages from the brain. Secondary fatigue can be a result of the other symptoms one may experience from MS. For example, disturbed sleep can be from bladder issues, pain or spasms, or fatigue may be a side effect of medications taken to aid MS symptoms.

Fatigue is more than the tired feeling that most people experience. Day to day tasks can be difficult to complete and is the feeling of exhaustion for extended periods of time. Lifestyle adaptations can be helpful, such as a change in diet, pre-emptive measures ahead of a particularly busy day or vitamin supplementation.

So, what is Spoon Theory? This term was reportedly introduced by Christine Miserando, who lives with lupus, and it was developed to help illustrate to the people in her life how fatigue feels for someone living with a chronic condition. The idea is that people without a chronic health condition start the day with an unlimited number of spoons, whereas someone with a health condition starts the day with a certain number of spoons.

Different activities throughout the day use up the spoons, and once the number of spoons for that day have been used, the only way to replenish them is by resting and getting good sleep. Getting ready for the day may use up as many spoons for as many tasks, for example, showering is one spoon, getting dressed is another. Or, if you wake up from a bad night’s sleep, you might begin with less spoons for the day than you might usually have.

Spoon theory helps the person living with MS understand their own pace and the tasks that they can realistically do in one day, whilst recognising that adjustments might need to be made. It also helps family and friends understand what it’s like to manage fatigue and how it impacts your daily life.

To learn more about MS and fatigue, download our latest Fatigue Choices booklet. From supplementation to tips on daily adjustments that you can make, our Helpline team has put this together for you to access it whenever you need to. Don’t forget, you can contact our helpline team free on 0800 783 0518 or via email at info@ms-uk.org.

Medicinal Cannabis and MS – What you need to know

Posted on: September 28 2021

Cannabis Choices Book Front Cover.jpg

Living with multiple sclerosis (MS) is a unique experience for everyone, including the range of symptoms someone might have and or the treatments that are available to them. Medicinal cannabis is a treatment that people up and down the UK need access to, and not just those living with MS. 

It was legalised for medical purposes in 2018, but unfortunately, it’s renowned for being difficult to access. This has improved over time, and we’ll be running through some of the changes in access to medicinal cannabis, which are explained in detail in our latest edition of the Cannabis and MS Choices booklet that you can read and download for free.

Despite the government legalising medicinal cannabis, getting access to affordable private prescriptions is a hurdle for many, since getting it on the NHS is also quite tricky. The methods in which medicinal cannabis can be obtained in the UK include cannabis flowers, which would be taken via a vaporiser or tinctures administered under the tongue, similarly to high-street CBD oils. Sativex is an oral cannabis-based spray that can be accessed in the UK, with detailed information inside the Cannabis and MS Choices booklet

A new study is underway in the UK with 20,000 patients to have a further look at the benefits and clinical effects. Project Twenty21 is being led by Professor David Nutt, who also runs the organisation Drug Science, to lead studies without political or commercial influence. The study comes in response to the National Institute for Health and Care Excellence (NICE) saying that there is not enough evidence to prescribe medicinal cannabis on the NHS. iStock-1075376246.jpg

Some people living with MS may benefit from CBD products available to buy on the high street. These are made using cannabinoids and do not contain THC – the psychoactive element of cannabis – and is found in hemp. The primary use of CBD is for pain relief and is available in topical creams or as tinctures that can be put under the tongue or mixed in food and drink. 

For more detailed information on the use of medicinal cannabis and CBD for MS symptoms, download our latest edition of the MS and Cannabis Choices booklet. Don’t forget, if you have questions about MS, treatments, or need emotional support, you can contact our helpline Monday to Friday, 10am to 4pm via webchat, email info@ms-uk.org or call 0800 783 0518. 

What is Ataxia?

Posted on: September 23 2021

On 25 September, it's International Ataxia Awareness Day. Dr Gretchen Hawley has written this piece to help you understand what ataxia is and some recommended exercises that you can do if you live with this condition. Headshot.jpg

Ataxia is described as a lack of muscle control and coordination of movements due to damage to the spinal cord and/or cerebellum, the part of our brain that controls balance. One of the most obvious ways ataxia presents in people who have multiple sclerosis (MS) is walking with an unsteady or staggered gait. This may mean that you have a widened stance, irregular foot placement, and abnormal distance between each step. Fortunately, there are many therapies and strategies that can be beneficial to improving ataxic gait.

Physiotherapy exercises can help improve and maintain function/movement. General guidelines, when performing exercises, are to incorporate motor control exercises. For example, practicing standing up without falling backwards or coordinating arm and leg movements while taking a single step. Additionally, balance and aerobic training can help improve motor control as well as fight fatigue. You can find several ataxia exercises here. Exercises should generally be performed for at least 20 minutes, 4 days a week, if your body can tolerate it. Remember that quality is more important than quantity.

General guidelines for exercising as well as moving around your home or community with ataxia are:
- Do one task at a time. Avoid multitasking.
- Make sure you’re stable after standing and before you take a step.
- Focus on quality of movement rather than speed.

Neurologic music therapy (NMT) and rhythmic auditory stimulation (RAS) have also been found to be effective therapies for ataxia. NMT is the culmination of music therapy, neurology, and brain sciences and is classified into 20 scientific and evidenced-based music interventions. The techniques are applied using music and rhythm to directly affect cognitive and physical function. RAS is considered to be a type of NMT and is defined as a therapeutic application of pulsed rhythmic or musical stimulation in order to improve gait or gait related aspects of movement. These treatments have been found to be effective in facilitating the prediction of motor timing and gait rhythm, ultimately resulting in improved foot placement and less staggered gait.

Finally, implementing “modified independence” during your day-to-day activities can be an effective way to improve coordination as well as safety. This means using a mobility aid, such as a cane, walker/rollator, trekking pole(s), etc. Using any of these aids can result in the ability to accomplish your tasks, such as walking around your home, climbing stairs, performing chores, but while ensuring maximum safety. Personally, I enjoy having my clients use a rollator while practicing walking so they can focus on foot placement and leg coordination, rather than additionally having to focus on balance. There’s no need to focus on everything all at once. Modify at first to allow your brain to focus on fewer components. Then, as you get stronger and improve your coordination, you may be able to take the mobility aid away.

If you'd like to learn more about MS-specific exercise, you can attend our monthly information sessions with Dr Gretchen Hawley. Find out more and sign up to our next session here

Learn about mindfulness with MS-UK

Posted on: September 16 2021

On Monday 20 September, there's two introductory sessions to our mindfulness courses. Our nine-week course is hosted by Phil Startin and here you can find out a little bit more about him and how mindfulness can benefit people living with MS. Phil Startin - Trustee.png

I’m excited to be leading the Mindfulness Based Stress Reduction (MBSR) course for MS-UK. For me, it draws on three important and consuming parts of my life – my own meditation practice, teaching the MBSR course to the general population and to people with multiple sclerosis (MS), and living myself with Primary Progressive Multiple Sclerosis for over 14 years. I’ve been practising mindfulness meditation for over a decade now, and have gone from being really quite sceptical of it ('hippy tree-hugging' was my view of meditation before I started), to it being an important part of my life and a really positive contribution to my health and well-being, which is why I started teaching mindfulness.  

So, what’s helped change my view of mindfulness? Well, there is now considerable medical evidence of the benefits of mindfulness in alleviating stress and anxiety, and that stress and worry can contribute to exacerbation of MS symptoms, relapses, progression of the condition, and perhaps even to the on-set of the condition itself. I know that mediating makes me feel better and has helped me deal with some of the huge changes in my life since diagnosis, and if it can help improve the trajectory of this degenerative condition I have then, fantastic!  

Mindfulness has also helped me deal with some of the symptoms of MS. I think regardless of when you were diagnosed and where you are on your MS journey, typically those of us with MS need to deal with the unpredictability of the course of the condition in terms of disease activity and relapses, as well as progression. But we also have to deal with the wide-ranging uncertainty around future physical and cognitive levels, with the associated impact that these will have on many aspects of our life – dealing with loss of function and the impact this has on our hobbies and careers, and how it affects our relationships – with our partners and family, and our friends. This includes too our relationship with ourselves and who we are, our personal values and goals, and our relationship with the condition itself. Pain and spasticity can also arise and have a significant impact on day-to-day life.  

Symptoms vary widely from person to person and all these changes can be frequent and dramatic at one extreme, or almost imperceptible at the other, but living with changing 'norms' is often part of the MS lived experience. I’ve personally found mindfulness helps me deal with the consequences of living with this condition, and recent research indicates mindfulness can improve the “quality of life” of those with MS, enabling us to live better with many of the MS symptoms.  

I started my MBSR teacher training at Bangor University over six years ago now, and am still supervised by a member of the staff there. For this MS-UK MBSR course, we have made some modifications to the standard MBSR course to make it even more relevant and helpful to those of us with MS, including a whole new session on lifestyle changes.

To take part in the free mindfulness introductory session, please contact register@ms-uk.org

 

Staying Smart

Posted on: September 01 2021

Ever forget where you’ve put your keys? Struggle to find the word that’s on the tip of your tongue? Can’t concentrate? You’re not alone. Thinking and memory problems affect more than half of all people with MS and can have a big impact on your day-to-day life. The MS Trust website offers an interactive web zone to provide everyday tips and tricks to help lift the ‘cog fog’. iStock-1133898111.jpg

‘Cognition’ is the general word that covers all aspects of thinking. It includes memory, concentration, and planning. The MS Trust have developed Staying Smart for people who want to learn more about how MS affects their cognition and to take action to reduce the impact that these problems have on everyday life.

Cognition difficulties generally fall into one of six categories, so Staying Smart focusses on those to help you quickly navigate to the information you need. You can work out which type of thinking is tricky for you, and select one of the everyday problems you experience, this will take you directly to the expert advice, hints and tips you can use yourself.

The most important feature of Staying Smart is you! It gives you the opportunity to learn from other people with MS facing similar issues. On each of the six key information pages, we encourage you to add any ideas and hacks which have made all the difference to you. It might be just the thing that someone else needs to help them.

To take a look at Staying Smart to both give and get advice take a look at the MS Trust's website: www.mstrust.org.uk/staying-smart

MS and fatigue - can training the brain help?

Posted on: August 31 2021

Finding treatments to help people with MS manage fatigue and the impact it has on their life

Authors Dr Alicia Hughes & Dominic Murrell

 

The burden of fatigue

81% of people living with multiple sclerosis (MS) experience fatigue (1). In an interview study with people with MS, one woman described fatigue as, “‘it puts my body in a situation where I feel like I’m shutting down. Like I’m just stuck in concrete and can’t move” (2). This type of fatigue is different to normal tiredness and isn’t usually relieved by sleep or rest (3).

Fatigue can have a big impact on people’s lives. Research shows that fatigue in MS is associated with:

  • poorer quality of life (4, 6)
  • increased depression (4, 6)
  • increased anxiety (4, 6)
  • poor cognition (4, 6)
  • poor sleep quality (4, 6)

Developing treatments to help manage fatigue is important not only to alleviate the symptom but to improve overall quality of life. In collaboration with people with MS, families and healthcare professionals, the MS society has identified fatigue as a top research priority (5).

The Flexible Brain Training (FLEX) project is an online program developed by researchers at King’s College London and people with MS. FLEX is designed to help people with MS manage the impact of fatigue on their lives though a type of brain training.

What is flexible brain training and how might it help?

Evidence shows that fatigue affects areas of our brain which are involved in processing information (6). For example, you might notice when you’re fatigued it’s difficult to focus or take in new information. To get around this our brains make mental short-cuts, for example skim reading.

By continually using these short-cuts our brain gets used to following the same path and the short-cuts can become automatic. These automatic short-cuts can result in our brains becoming less flexible over time. So, rather than taking in new information and adapting to environmental cues, our brain relies on the same old paths it is used to taking.

The FLEX project is series of self-guided, online sessions over a period of 3 weeks, designed to increase brain flexibility through repeated practice. 

The FLEX project will assess whether we can

  1. change how the brain deals with or processes information and
  2. whether training the brain in more flexible processing is helpful for people with fatigue.

Get involved

We are now testing the FLEX program to see if it is helpful for people with MS.

We are recruiting people with MS who experience fatigue to take part. Participation involves

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To find out more please register your interest on the study website: www.flexproject.co.uk Picture2.png Picture3.png

Click here for reference list

 

Help to improve your financial wellbeing

Posted on: August 06 2021

iStock-825810188.jpgLaura, Ryan and Shaun from the MS-UK Helpline have worked together to create this comprehensive blog which provides you with everything you need to know about the benefits available to you and how to get them

Did you know that disabled people face extra costs of around £583 a month? On average, a disabled person’s extra costs are equivalent to almost half of their income and according to research carried out by the charity Scope, money spent by disabled people does not tend to go as far. So, maximising income and using all entitlements can help make sure your finances are looked after as much as is possible.

Our welfare benefits system is an important part of giving disabled people some financial security and a degree of financial wellbeing. Claiming the right benefits with the right premiums can allow people to exercise choice and control over their support and the way they live their lives.

In this blog, we look at a variety of ways to either make sure you are receiving what you are entitled to or ways to save money by accessing specific schemes available to you.

 

Benefit calculators

Navigating the benefits system can be a complex and often lengthy task. Knowing how to find out what you may be entitled to can be difficult. That is where the handy online benefit calculators can help. They are only available to those living in the UK.

There are three main independent benefit calculators that can help you, to find out what you may be entitled to, and how to claim for them. They are free to use and are anonymous. They vary slightly in the information they can give you. For example, Turn2us does not give information on contribution-based benefits whereas the others do.

entitledto gives information on income-related benefits, tax credits, contribution-based benefits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work.

Turn2us gives information on income-related benefits, tax credits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work or change your working hours.

Policy in Practice gives the same information as entitled to, but also tells you how the benefits are calculated and how they will be affected if you start work or change your working hours.

To complete the calculators, you will need to provide information on any savings you may have, household income, existing benefits and pensions (including anyone living with you), your outgoing bills (such as rent/mortgage/childcare payments), a council tax bill.

 

Grant searches

Circumstances can mean that sometimes extra funds are required to help with things such as adaptations, mobility aids, new technology and equipment, to name but a few. There are grant funds available that may be able to help. Grants are not normally repayable and occasionally you may need to work with an intermediary organisation such as Citizens Advice or your local disability support charity.

Turn2us has a helpful search tool that can find potential grant funds. Using the filters on their search function you can search by occupational grant-giving bodies, disability charities and organisations that are local to you.  

MS Research and Relief Fund offer financial assistance specifically to those affected by MS.

Disability grants is a website that provides a guide to grants for the disabled. You can narrow down your search to be more specific, such as a grant for disability equipment, including wheelchairs, adapted vehicles, trikes and bikes, computer and assistive technology grants.

 

Insurance

Finding insurance that provides you with the right type of cover, whilst being affordable, can prove to be complex. This is especially so for those affected by a registered disability such as multiple sclerosis (MS) and applies to all types of cover. For example, with home insurance, you may have specific expensive items that you need to be covered for accidental damage, such as stairlifts, and your medical condition may lead to an increase in your travel insurance premiums.

It is important to be aware of issues that you may need to consider, whether that be when you are looking for a brand-new policy or how to deal with any changes in your medical circumstances that could affect your current cover.

MoneyHelper formerly known as the Money Advice Service is powered by HM Government and provides a detail-rich guide to obtaining insurance if you are disabled or ill. This guide looks at your legal rights, highlights things to consider when buying insurance and how to challenge decisions that you feel may be discriminatory.

Insurance and MS is an informative guide provided by the MS Society which looks specifically at issues that people affected by MS should consider, from types of policy and cover they provide to what you should tell insurance companies when disclosing your condition. 

 

Free prescriptions

If you live in Scotland, Wales or Northern Ireland your prescriptions will be free, but if you live in England the cost is £9.35 per item. Some people qualify for free prescriptions if they are eligible for a medical exemption certificate. One part of the eligibility criteria that may well apply to some people living with MS is that if you have ‘a physical disability which means you cannot go out without the help of another person’ then you should be eligible for an exemption certificate.

 

The ‘purple pound’

Most of us have heard about the ‘pink pound’, but do you know about the ‘purple pound’? This is the spending power attributed to disabled households in the UK and amounts to £249 billion a year. Research has shown that disabled people are overspending in many areas compared to non-disabled people. We know that people may need a little extra help when making sure they have as much choice as is possible in how and where to spend their purple pound.

If you want to be able to make sure your disability-related expenditure is money well spent, then it would be good for you to know about the Research Institute for Disabled Consumers (RiDC). RiDC is a user-led research charity, run by and for people with a lived experience of disability. They give practical information for disabled and older people, whether that’s information about being at home, or out in the community and all based on independent unbiased research. They have guides on buying mobility scooters, getting mobility scooters into cars, driving with a disability, specialised hand controls in cars, stairlifts, home adaptations, accessible bathing and showering and even washing machines!

Whilst planning purchases for often expensive independent living aids and trying to make all the pennies stretch as far as you can it is also worth knowing about Living Made Easy. Living Made Easy is a large and trusted online comparison site for sourcing daily living equipment, disability aids or assistive technology. The website is designed and run by the Disabled Living Foundation (DLF) which is a national charity whose purpose is to provide independent advice about independent living for people with a disability, older people, their carers and families. You can search for products, get advice and find the cheapest national retailer.

 

VAT exemption

It is important to know and remember that if you're disabled, the Government says you shouldn't be charged Value Added Tax on items that have been designed or adapted for your personal use – e.g., specialist mobility equipment to help you get around. As this includes products specifically made for disabled people, your supplier, installer or tradesman shouldn’t charge VAT. Your supplier will usually ask you to sign a declaration form stating the item is to be used by a person with a disability.

 

Cinema card

Do you like movies and the cinema? Do you get PIP? You could well be entitled to a CEA card from the UK Cinema Association. The card enables a disabled cinema user to gain a complimentary ticket for a person to accompany them when they visit a participating cinema.

 

Heating your home

The Warm Home Discount scheme requires big energy suppliers (by law) to help vulnerable customers in England, Scotland and Wales to pay for energy. Those who are eligible can get £140 off your energy bill. Although the money is not paid directly to you, it is a discount/rebate on your energy bill, between October and March. To be eligible for the scheme you must be on a low income or receive the Guarantee Credit element of Pension Credit. It is suggested that you first speak with your energy supplier to see if they are part of the scheme. The Warm Home Discount also has a helpline that may be able to help, they can be reached on 0800 731 0214.

 

Financial advice

If you need independent financial advice over money matters for some of the bigger things in life such as making the most of a lump sum of money such as a life insurance pay-out, redundancy payment, an inheritance or planning your retirement, Citizens Advice has some great information. These web pages tell you all about the different types of advisors and how to check they are qualified and registered with the relevant bodies.

There are many other schemes out there, if you have accessed one that we have not mentioned, please do email our helpline with details as your information could help others. Email info@ms-uk.org

 

If you would like to discuss anything we have mentioned in this blog, please do call our helpline on 0800 783 0518. Our helpline is available Monday to Friday, 10am to 4pm.

'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. 

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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!

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