This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
I just wanted to say a big thank you for supporting MS-UK during MS Awareness Weekby adding my #SmilesWithMyles twibbon to your social media profile pictures!
Over 300 of you lovely people added my twibbon, and it all helped us to spread a positive message throughout the week – thank you!
MS-UK published lots of information about multiple sclerosis to celebrate MS Awareness Week, including Samreena’s real life story about HSCT, Taflyn’s story about living life to the full and an infographic about the invisible symptoms of MS, so do take a read of the MS-UK blog.
If you missed last week, you can sign up to the MS-UK e-newsletter to stay up-to-date about future campaigns such as World MS Day.
Big bear hugs!
Myles, the MS-UK mascot
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 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.
I just wanted to say a massive thank you for supporting my #SmileswithMyles campaign during MS Awareness Week 2016 – you guys make it all worthwhile!
We had a great week celebrating and spreading a positive message about living life to the full with multiple sclerosis. Over 300 people supported our Twibbon idea – thank you!
Lots of you also followed me on Instagram, which is great to see – if you forgot, you can find me on Instagram today!
Next in the diary is World MS Day on 25 May, so remember to sign up to the MS-UK monthly e-newsletter this week so you get all the details in plenty of time!