In her latest blog, MSer Joanna talks about her first round of Lemtrada and reveals what made recovery easier for her.
Back in June 2018, I had my first round of Lemtrada. Here’s all the things I wish I’d been told beforehand!
Drink as much water as possible, and I'm talking in excess of 3 litres a day. Take cordial to make it easier to drink. Especially as when that awful steroid taste gets in your mouth, water is almost unbearable. Keep asking the nurses for top ups. It helped keep my body temperature and blood pressure down, and held any headaches at bay.
2. Mint imperials are your friend!
That steroid taste is awful during the infusion, but does go afterwards. Mint imperials helped a lot. Take a couple of bags with you. You won't regret it.
3. Get outside
I found it helped if I could get out in the fresh air. You're not bedbound during your stay. Stick around during your infusion, but it helps to get outside even just for half an hour at some point that's convenient.
4. Keep busy
Some days go quicker than others but there's only so much of the comings and goings on the ward that you can watch before you need something else. Watch that series you've been meaning to watch on Netflix, write someone a letter, or do a crossword.
5. Try and retain normality
Every morning I had a shower and did my hair and make-up. Having a bit of a routine made me feel normal. Keep this up during your recovery too. It really does help your mental health.
6. Steroid crash
I only took steroids on day 1 to 3 of my infusion. Because I hadn't had steroids before the Lemtrada, my body had a hissy fit. You might have some kind of emotional crash. Just to add insult to injury, you'll probably break out in what looks like hives. Don't touch them. It's not that itchy unless you make that fatal, first scratch.
7. Don't suffer in silence
Us MSers are used to putting on a brave face. We rarely feel 100% but for the most part we shrug it off. But you do not need to be superman or woman when you're in hospital. Have a rash? Accept the IV piriton. Have a tight chest? Take the nebuliser. Nobody's going to call you a hero for soldiering through. They'll probably say you're stupid if you do that!
Ask all the questions. Continue to do so when you come out. Use the #Lemtrada hashtag on social media to find other people in your shoes. If you're in the UK, join the Lemtrada group on Facebook. Keep on learning and talking to other people that "get it".
9. Plan ahead
The last thing you'll want to do when you get out is go to the supermarket. You'll think you can, but after 20 minutes you'll probably realise it's the worst idea of your life. Whilst in hospital, get ahead of the game and schedule a home delivery.
Rest. You're going to have good and bad days. You might feel like you're having a "pseudo relapse" with every symptom you've ever had flaring to it's worst. You'll have a good day then pay for it the following day. Be gentle on yourself. It's not a miracle cure, you won't suddenly be OK overnight. Things might take a while. But it'll be worth it.
You can read more from Joanna on her blog ms-understood.com
Darkness falls across the land. The midnight hour is close at hand. (But at MS-UK the day's quite grand!)
Halloween is creeping ever closer. Soon the streets will be full of face-paint zombies, bedsheet ghosts and passable attempts at characters from horror films. It's a fearsomely fun time of the year that gives us mere mortals a fang-tastic opportunity to get creative with our fundraising!
Whether you host a haunted house party, create and sell a batch of creepy cupcakes, or you channel your inner Thriller and hold a sponsored dance-a-thon, there's plenty of ways to get involved! And don't worry - even the smallest of donations can make a huge difference to MS-UK!
Want to get started? Why not sink your teeth into our top five freaky fundraising tips!
1. Your Halloween costume can make or break a party! Get it right and you're already halfway done...
2. Hosting a pumpkin carving morning is a super-simple way to get people together. You'll also have enough pumpkin left over to whip up about a year's worth of soup.
3. Brushing up on your dance moves is always a good idea. Don't be afraid to bring your spooky shuffle to the dancefloor!
4. Just another day at the office... Getting work involved with your Halloween fundraising is never not fun!
5. Release your inner showperson. If Halloween isn't a time to get silly, when is?
If you want to kick off your own Halloween fundraiser, get in touch with Lucy who can help you every step of the way!
Dean, Wellness Centre Manager at Josephs Court in Essex, tells us all about his recent visit to the Rotary Club of Centurion Colchester...
On 17 October, I was delighted to deliver a presentation to the Rotary Club of Colchester Centurion, who do a fantastic amount of voluntary work and fundraising for charities and good causes in Essex.
We were very well received! The club members were keen to know more about MS-UK and what we do both locally and across the UK.
We were privileged to be joined by Judy Sexton, one of our long standing Josephs Court clients. Judy shared a moving personal story of her time at Josephs Court, the heartfelt account of her experiences living with multiple sclerosis (MS) and attending the centre really touching a chord with those in the room.
We were also joined by the Chairman of our Board of Trustees, Martin Hopkins, who outlined the charity's vision for supporting those with MS. Members of the Rotary Club of Colchester Centurion are now planning to visit Josephs Court to see the facilities for themselves and learn more about how access to our centre improves the lives of local people affected by MS.
To top off a successful morning, the club generously donated £2,000 to MS-UK in order for Josephs Court to purchase a brand new piece of equipment! We have been looking to offer resistance-based exercises at the centre for a long time. This form of training has been shown to benefit people with MS by increasing muscle mass, improving tone and ultimately making daily functions easier. In addition, the benefits can be seen on a physiological level, improving neural transmissions from the brain to the muscles and reducing the progression of brain atrophy (shrinking). With that in mind, we cannot wait for our shiny new weighted pulley machine to arrive!
We would like to say a huge thank you to Rotary Club of Colchester Centurion for their very kind donation. I will certainly be letting them know how our clients are getting on with the new machine when it arrives. Thank you!
Wellness Centre Manager at Josephs Court
I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!
Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16.
On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started.
Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility.
Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.
If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback.
Editor, New Pathways
In our latest guest blog, Joanna Livermore shares her top 5 exercise tips for those with multiple sclerosis (MS).
Since being diagnosed, in an attempt to restore normality to my life, I’ve been making tentative steps back into the gym. It feels good to be back! Here are my top 5 tips for exercising with MS.
1. Be honest
If you have a personal trainer let them know how your MS impacts you in general, but also how it's impacting you that day. They can't be an expert in MS, but with your honesty, they can tailor your training to fit how you feel on that day.
Get to know your body and what it's trying to tell you. If your body is telling you that you can't train today, listen to it. It's ok to skip a session if you've not got much fuel in the tank. Some days you might just need to change the way you train. If your leg is causing you a bit of pain, train your upper body instead. Maybe you need to reduce your weight and go for higher reps. You might need to take longer breaks between sets. Do what you need to do, and don’t beat yourself up!
We all know that with MS, controlling your body temperature can be a nightmare. I've literally overheated in the gym before and seen stars because I've got that hot. Drinking lots of water while you're training will help keep your body temperature down.
4. Change the time you train
I used to go to the gym straight from work, but I find this really tough now. Many people don't have the motivation to go back out to the gym at 8pm at night but it means that I get to have a bit of a break after work which helps to recharge my batteries. You might find changing the time you train means you can have a better session.
5. Don't waste time worrying what other people might be thinking
The other day, I was finishing my workout with a 3.5km/h walk on the treadmill. And the guy running next to me was looking at me as if what I was doing was kind of pointless. Before that I'd been deadlifting a 16kg kettle bell next to a girl lifting 75kg. I couldn't help but think she thought I was pathetic. Firstly, it was unlikely that either of them were thinking those things, and secondly even if they are they don't know that I have MS and if they did they’d probably think I was awesome!
We aren't MS warriors for nothing. We grin through pain, fatigue and everything else. It doesn't matter if you're running 1k or 10k, lifting 5kg or 50kg. You are amazing for even being there. As long as you can be honest that you've tried as hard as you can on that day, you're an absolute rock star.
You can read more from Joanna on her blog ms-understood.com
Sue Bowles recently completed the West Highland Way in aid of MS-UK - a gargantuan 95-mile Scottish trek from Milingavie to Fort William! Sue tells us all about the challenge in her Fundraiser of the Month blog!
I decided to do this walk for MS-UK due to the inspiring way an ex pupil of mine has dealt with her diagnosis of multiple sclerosis (MS).
Kadeena Cox was a pupil of Wetherby High School and I had the privilege to teach her PE and coach her hockey. Kadeena was a very talented PE student and went on to be captain of the school hockey team. However her main talent was her speed and she became very involved in the Leeds Athletic Club where she would go most nights to train.
Kadeena's dedication to her training paid off and she earned herself a place in the elite Olympic camp. It was then, while training, that Kadeena was diagnosed with MS.
However she decided that she would not let it get it in the way of her ambition to become an Olympic competitor and she continued with her training, earning herself a place in the GB Paralympic team in 2016 in Rio, Brazil. Not only did she compete in cycling and sprinting events but she brought home gold, silver and bronze medals. She followed this up with many more achievements in the World Championships in 2015 and 2017. Kadeena is now focused on the 2020 Paralympics, and I am sure she will be as successful as ever.
She is a great role model showing that whatever obstacles come into your life you can adapt and still achieve many of your goals. Her attitude to MS mirrors the ethos of MS-UK whereby you can cope with challenges and still live your life to the full. That is why I chose to fundraise for MS-UK and to raise awareness of MS and the support that is available.
After completing the West Highland Way, which is set in stunning countryside, I decided it should be named the West Highland Challenge! I loved the whole experienc - all the blisters, rain, wind, and glorious rainbows! Whenever I was finding it tough I kept thinking about why I was doing it and I knew it was just for the moment. If I could just help a little bit for people who have to cope with an added challenge everyday then it was nothing.
I hope in some way my story might help to inspire someone else to promote awareness of MS and support MS-UK with all the work that they do.
I am delighted to say that our Annual Review 2017 is now published. This booklet is our way to thank our supporters and celebrate our success in a public way, and I hope you enjoy reading it.
Our vision is a world where anyone affected by multiple sclerosis (MS) can access the information and support they need to make their own decisions. Since 1993 we have led the way in promoting choice, tackling taboos and remaining independently funded. We are built on a foundation of listening and acting according to the needs of people affected by MS. I am thrilled to see that this is reflected in our work from last year.
We are driven by our values, guiding principles that inform every aspect of our work. In 2017 we were able to bring these values to life, and our services supported thousands of people. Every service is shaped by people affected by MS. By listening to people, we are able to offer services that are truly community led.
Thank you to every single person who has shared their voice with MS-UK or supported us so on our journey so far.
Our work would not be possible without the support of so many people.
It's not every day that you see a patient bed out in the wild.
On Tuesday 16 October, I paid a visit to One Colchester Shop in Colchester, Essex to check out the local Healthwatch Patient Bed Roadshow. The striking visual event, which is travelling the length and breadth of Essex on a five day tour, invited people from the street to sit on a bed (no need for pyjamas!) and talk about what they thought about health and social care in the area.
The Healthwatch Essex team, who strive to represent the views of local people about health and care services in the county, hope that the stunt can help raise awareness of issues that individuals of every age face day to day. Plenty of people opened up about their experiences during my visit, and no two responses were quite the same. Some highlighted a lack of mental health support in healthcare, while others criticised GP waiting times and staff shortages. Plenty more heaped praise on the doctors and nurses of the NHS who cared for loved ones.
As well as the bed interview showpiece, a team took to the road with a handful of pens, colourful post-it notes, and an old-fashioned notice board to get passersby to jot down a quick sentence summarising their thoughts. This rainbow of thoughts were then stuck to the board and displayed at the exhibition.
You can still catch the event for yourself in Southend and Harlow. Check out the Healthwatch Essex events calendar to find out where and when.
Last week we saw the annual ECTRIMS meeting in Berlin where the world’s multiple sclerosis (MS) experts, consultants, researchers and neurologists came together to share their knowledge and keep up to date with the latest developments in MS.
To help you trawl through the 1,500 plus research extracts that were published for the conference, we've hand-picked the top five stories that you need to know about!
Don’t forget to share your comments and lookout for more ECTRIMS news in the coming weeks!
Editor of New Pathways Magazine
Despite the torrential rain and howling wind of Storm Callum trying its utmost to blow passersby into The Serpentine, all 13 of our #TeamPurple runners managed to complete the Royal Parks Half Marathon on Sunday 14 October.
The day started mildly enough. Armed with 'clappers', a megaphone and a swathe of MS-UK purple flags and banners, our cheer squad hunkered down in Kensington Gardens, just around the corner from the race's 11th mile. Two miles east, over at the start line in Hyde Park, the #TeamPurple runners stretched their legs and prepared their pre-race rituals.
At 9am the race began. Runners in colourful vests and costumes (including a terrifying half-tiger, half-human onesie hybrid) embarked on a route that took them past Buckingham Palace, underneath Admiralty Arch and then looped back through the lanes of London's beautiful royal parks between autumnal trees ablaze with golden leaves.
It wasn't until the stopwatch clicked over to the 45 minute mark that the heavens opened. Rain fell in sheets. Paths became puddles. Waterproof parkas were pulled on in record time. Still the runners pressed on, their final miles fuelled by the whooping and hollering of our motivational cheer squad!
Thank you to all our on-the-day volunteers, the #TeamPurple runners (who are most likely still drying off), and everyone who donated and helped us raise a quite incredible £5,261 so far! Because of all your hard work and commitment, MS-UK can continue offering vital support and services such as MS counselling to those that need it.
Do you want to be part of something great? Then why not join the #TeamPurple running team?