Elissa Benson, NCT Breastfeeding Counsellor and Chartered Neuro Physio, talks breastfeeding and MS
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. 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 indicated for use when breastfeeding, but that doesn’t mean you can’t breastfeed. 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, others feel the medication will allow them to look after their baby and that’s their priority. It really depends on what medication you need to take and what stage your MS is at, but there are options and it’s your own personal decision.
To find out more information about which medications are, or are not compatible with breastfeeding by visiting the Breastfeeding Networks 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 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.
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
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 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 your body releases when you’re breastfeeding are the ones that help it return to its pre-pregnancy state.
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 https://www.nct.org.uk/
As part of our MS Awareness Week campaign we are asking those with MS to share a message of living life to the full with multiple sclerosis. Taflyn Mcloughlin was diagnosed with MS at a young age, but that’s never held her back…
‘I was diagnosed with MS during my finals at university, I was 21. I was training to be an occupational therapist and started experiencing some unusual sensory symptoms. My mum has secondary progressive MS, so I knew lots about the condition and spent a lot of time trying to understand my symptoms to see if they might fit the symptoms of any other condition. Secretly I hoped it was psychological, but doctors did various tests and diagnosed me with MS.
I’m now 40! I have two wonderful children aged eight and 10 and a fabulous husband who I met post diagnosis. I currently work part time as an OT in the community, having spent the first 16 years of my career working in acute neurology.
I love walking, I play competitive netball in the Birmingham league (I play Goal defence, or goal keeper if I want to do less running!) and I’ve even been known to participate in the odd Tough Mudder and a few park runs.’
If you would like to share your message please email email@example.com.
As Samreena Kamran from Birmingham celebrates her one year anniversary since having HSCT treatment in London, she candidly reveals what life has been like since...
The moment I found out I had been accepted to have HSCT (Hematopoietic stem cell transplantation) treatment was surreal because I knew that things where about to finally change, even though I still didn’t fully understand what the treatment would involve. All I truly knew was that if I didn’t have chemotherapy I wasn’t going to find the cure I was looking for.
Now I’m one year on from having that treatment and I’m living my life. Since having it people have asked me, what are the negatives of having HSCT in the UK? To be honest I don’t think there were any negatives. I look at the whole experience as a positive and the only negative really is that no one can say for sure what date you might go in and actually start your treatment, they can only give you a rough idea. It’s all to do with the availability of beds. Things happen, they change and people who are more seriously ill take priority over you because although you have MS, it’s not a life threatening illness.
One of the most popular questions I’ve been asked is did my treatment go smoothly? Well the answer is probably not. I’m not known to do things smoothly. I became ill shortly after returning home and developed sepsis, for which I had to be hospitalised and treated. I just had to put my trust in the professionals.
I’m not going to lie, the last year has been tough. I was walking better with my crutches back in 2013 when I first discovered HSCT but I was told by my neurologist that it wasn’t for me. Because I waited two years before finding out more and perusing treatment, more damage was done. It does bother me that I’m still not walking, but my physio says nothing will ever be good enough for me, I guess I’m tough on myself. However, that’s also what keeps me going, I will walk. My physio gave me a picture of a quote, which sums up my situation right now. It says: ‘Strive for progress, not perfection’. When he gave it to me he said, we’ve just got you walking up the steps, give yourself time.
I’ve also been left with some stiffness and spasticity, which the professionals are treating for me. However, I do believe that this can hopefully be improved over time because the brain is able to rebuild its neurons. I’m using my mobility scooter a lot at the moment because I’m trying to give my body time to recover from the treatment and all of the drugs. I believe, as with anything else in life, there needs to be a positive mind-set, and that’s why I believe things will get better.
There have also been lots of good subtle improvements that have happened along the way, but the best thing is that my MRI scans now show no more disease activity or lesions. My MS is stable. It’s so nice to know and hear I’m not going to get any worse. I used to worry about my care and what home I would go into because I was declining so rapidly, and now that’s not going to happen. Now I can plan and live my life.
I would definitely recommend HSCT to anyone with MS. I think my situation and progress so far shows that the sooner you have this treatment the better.
To read more real life stories from other MS patients, download issue 96 and 102 of New Pathways magazine.
Clinical Nurse Specialists in MS, Julie Webster and Helen Willis give their top tips...
Additional information You should be seen by your MS nurse every year, but if all is well most can do a review over the phone. If you are on a disease modifying treatment you should be seen every 3-6 months by your nurse or consultant. Want to chat? The MS-UK Helpline is open Monday to Friday. You can call us on 0800 783 0518 or chat with us online via our live web chat service.
Hi everyone, As it is MS Awareness Week, I just wanted to let you know about our national services that we offer here at MS-UK to supporting anyone affected by multiple sclerosis.
In my role at MS-UK I work on our Helpline. We are open Monday to Friday, 9am to 5pm, and we can give you all the information you need to make your own decisions. I answer questions about a range of topics, such as benefits, treatments and travel. There really are no taboo subjects, and because MS-UK does not accept any funding from the NHS or pharmaceutical companies, we can remain completely unbiased.
You can call me or any of our Helpline team on 0800 783 0518, or use our live web chat service online. We also have a telephone interpreting service for anyone with limited English or no English at all. Just visit our website to find out more about this.
We also produce information about multiple sclerosis, including our Choices leaflets. We cover topics like treatment, symptoms and life with MS. We have some useful downloads on our website such as the newly diagnosed booklet which you can download or order a free printed copy of. We also have a symptom diary which can be handy for when you have an appointment with your MS nurse or GP.
Our other national service is the bi-monthly magazine, New Pathways. Available in print, audio CD, plain text or online via the My MS-UK app, New Pathways covers MS news, research and topics you need to know about. At MS-UK we feel it is vitally important to share the real life stories of people affected by multiple sclerosis, and New Pathways gives us a chance to do this and showcase opinions and views.
You can find out more about New Pathways on our website. Should you need any support of information, please do get in touch, as we’re always here to help, Best wishes, and have a great MS Awareness Week!
Kim Salmon MS Advisor, MS-UK Helpline
MS Awareness Week has arrived, and I am pleased to say we are celebrating with our beloved mascot Myles.
Here at MS-UK, we believe that anyone affected by multiple sclerosis should be able to access the support and information they need to make their own decisions. We aim to empower people living with MS to have choice and independence, and I hope you’ll join us this MS Awareness Week.
Thank you for being part of our #SmilesWithMyles campaign – you are helping us to spread a positive message this MS Awareness Week.
Tomorrow morning, thousands of people will take on the Virgin Money London Marathon. Their reasons for running range from fulfilling a lifelong dream to remembering a loved one. This week, MS-UK has been at the Expo all week at ExCeL London meeting many of our dedicated runners, and it has been an amazing week! Every single person who is fundraising in aid of MS-UK has a #ReasonToRun, and we wanted to share just a few with you before the big day...we hope they inspire you as much as they have inspired us. Good luck to every single runner tomorrow, whatever your #ReasonToRun, we'll be cheering you on every step of the way, Best wishes, The MS-UK fundraising team
Kyla Whitefoot is a relative newcomer to running. After Kyla had seen the Virgin Money London Marathon on television and been fascinated by the strength it takes to run the distance, she set out on her own course. Helped by her son, Kyla has worked hard to maintain a healthy lifestyle with the ultimate goal of running the London Marathon!
‘I have always wanted to be able to run (even to the point where I regularly had dreams about being able to run, but just wouldn’t be able to), but had been very overweight, even obese, since childhood. I had watched the Virgin Money London Marathon coverage on the television many, many times and been fascinated by what it takes for people to participate, hearing their stories when they were interviewed, and wanting to feel the way the runners obviously did.’ In October of 2015 Kyla’s son, Dan had shown an increasing interest in health and fitness. As a result of this, he drew up a fitness plan for Kyla and promised to go to the gym with her and to eat healthily as well.
Kyla lost a total of six stone preparing for the marathon! What ensued was a steady weight loss of just over 2 pounds per week on average and a loss of over 6 stone in total by summer 2016!
‘I gained control of my overeating, my weight and have maintained a healthy lifestyle since then for the first time in my life. I’m a great believer that things like this only happen when you’re in the ‘right place and time’ in your life!’
‘In the meantime, Dan and I had watched the 2016 marathon coverage and talked about how amazing the event was, and I had a ‘lightbulb moment’ as to what my ultimate goal could be.’ Following this, Kyla applied for one of MS-UK’s Virgin Money London Marathon gold bond places, pledging to raise £2,000 for a cause that is close to her heart. Kyla’s mum was diagnosed with multiple sclerosis before she was born and struggled with the disease and resulting symptoms for 30 years. ‘My Mum suffered horrendously during the last few years of her life. My amazing Dad shouldered all of her care when I was growing up so I could 'be a normal kid' as much as possible and neither he nor Mum ever put any responsibility onto me during her illness.’
‘Raising money for MS-UK is my chance to finally give something back in Mum’s honour.’
‘I know that if she had received support such as that is now offered by MS-UK it would have made such a difference to her day-to-day life, not only in that she wouldn’t have felt as if she had to hide away the need to talk to someone, but also the ease of getting in touch with others in her situation. It breaks my heart that she probably felt as if no one really understood what she was going through.
’ Supported by friends, family and work colleagues, Kyla has had an extraordinary response in her goal to reach her £2,000 target. Her dad and friend Hilary have been particularly supportive with sponsorship, every time Kyla has taken part in a race, being great motivational forces!
The company Kyla works for, The Litmus Partnership, have also been very supportive, granting permission to add her fundraising link to her email signature. Her work colleagues have donated the proceeds from their annual ‘swear tally’ fundraiser to the fund.
‘It was really difficult not to entertain thoughts of ever-so-temporarily sabotaging the office equipment to annoy everyone, to the point that they let off a stream of obscenities in frustration!’ says Kyla.
Everyone at MS-UK is wishing Kyla every success in the Virgin Money London Marathon; look out for her on the television!
‘I can’t wait for April now…when I’m not feeling a little terrified, that is. Bring it on! #teampurple’
Jan Hazirci has run the Virgin Money London Marathon before and jumped at the opportunity to run it again, this time in aid of a cause that is close to home, MS-UK. ‘I ran the London Marathon in 2014 and I thoroughly enjoyed everything from training to fundraising to the actual run of 26.2 miles. I chose MS-UK because my sister’s husband is a sufferer and is deteriorating rapidly. I’ve seen the heart-breaking changes to his health that he has endured. I know MS-UK is a fantastic organisation supporting and helping people with MS from the first phone call from someone who’s been diagnosed to helping the likes of me with fundraising tips.’
‘I know MS-UK is a fantastic organisation supporting and helping people with MS…’
Jan has been training for the Virgin Money London Marathon since she accepted an MS-UK Gold Bond charity place and has been training hard to help her with the feat. Jan runs and trains with a running club and from November until April has run four 10k runs, three half marathons and one 5k! She has also been reaching targets ever since, with a personal best (PB) in her last half marathon and two more approaching.
‘I’m training hard and getting faster and fitter. The thing that I didn’t know before was that I’m a good runner, I have persistence, determination and I’m very strong.’
Jan has pledged to raise £2,000 for MS-UK and so far has had a brilliant response from friends and family in helping to reach that target! Several different fundraising avenues have been explored such as car boot sales, donations from football teams, shop collections and the tips Jan’s husband collects in a month will be added to her total. Jan has been supported particularly by her husband Hakan and her two boys Hasan and Mehmet Hazirci.
‘I feel honored to be able to raise as much money as I can for MS-UK and run the London Marathon. Their professional help for people coping with MS is truly wonderful and if they can help just one person or family who struggles with this terrible condition….then all the hours of pounding the streets in the cold, dark, wind and rain, the blackening of toenails, every single bead of sweat is worth it.’
Everyone at MS-UK wishes Jan luck with her running and hopes she enjoys her Virgin Money London Marathon challenge!