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Managing fatigue

Posted on: November 28 2018

In this blog, our MS-UK Helpline take a look at fatigue...

Fatigue cover.png

Our Choices leaflets are available online

Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!  

Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.

Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.

It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.

Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.

You can read and download all of our Choices leaflets on our website

Guest blog: My year living with multiple sclerosis

Posted on: November 19 2018

In his latest guest blog, Tom Cutts tells us about life with MS since being diagnosed a year ago...Photo of Tom Cutts

A year, wow, how time flies. At the time of writing this it’s exactly a year since I was diagnosed with multiple sclerosis (MS). Before that day I had no idea what MS was. Now all I think about is MS. Instead of thinking about what I want to do in 3 years time I’m now planning what I can do in 3 hours time. Every day is a different day. On a Saturday night I’m looking forward to my run in the morning and pumped up ready to go…then the morning comes. It’s Sunday. I’m struggling. Time to change my plans.

That is one of the things I’ve learnt most about MS. I’ve always made plans months in advance let alone weeks, but now I look at this in a new light. At first if I missed a plan I would sink to a new level, I felt like MS was controlling my life, I felt that it was the end of the world. Now I look at it and even though I’m still upset, I remember it’s only one day, they’ll be others I can attend. If you have amazing friends like I do then they’ll understand, as long as you let them. This brings me on nicely to what else I’ve learnt.

Talking. Talking about my MS, my depression, my everything is possibly the best thing I’ve learnt since being diagnosed. You shouldn’t have to bottle up what’s inside, it’s scary telling people but how else can someone help you? I’m not afraid to say that I had counselling. I’m not afraid to say I went home and cried after some sessions. I’m not afraid to say it is one of the things that’s helped me the most. It gave me the confidence to speak to my family, my friends, my girlfriend. It’s why I’m happy to be so public about everything I’ve been and am going through! Because of this they all understand what’s happening with me. MS doesn’t just affect the sufferer. I know that people have cried over my diagnosis and the affect it’s had on me, but I also know that being open and approachable about it has helped them. If I had to give one piece of advice to anyone suffering with something it would be to talk about it.

Do you have something you love to do? Love to see? For me fitness is the one thing I love to do. I may complain about running on a cold Tuesday night in Swindon, or a rainy Colchester morning, but once I’m out there I love it. Ok I lie (don’t judge me) but I love to read too. This year I’ve read over 30 books and they’re not just tiny books either! Escaping in to another world, furthering my knowledge in something, allowing myself to become fully immersed in a book has helped me through this year. Find something you love to do. Find something you want to love to do. Hobbies, interests, whatever it is, give it your all and you’ll appreciate it afterwards.

A year on and I still don’t really know what MS is. Does anyone?! I ask numerous silly questions multiple times and I will carry on doing this for as long as I live! One year down and hopefully many, many more to come. I’ll get there one day, maybe come back and ask again next year?!

Remain positive.

Tom

Find out more about MS-UK Counselling

MS-UK Counselling is a confidential service open to anyone living with MS. You can talk about your thoughts and feelings with a qualified professional that also has an understanding of MS. 

Visit our web page for more information

Brrrrr…Our 10 top tips for dealing with the cold

Posted on: November 06 2018

The MS-UK Helpline shares some top tips for dealing with the wintry weather...Winter top tips graphic image

It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.

MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:

  • Increased stiffness and issues with spasticity
  • Higher fatigue levels
  • Increased and unpredictable bladder urgency
  • A worsening of perceived pain
  • Problems with sensory issues, particularly in the extremities

One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.

Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.

Top tips...

  1. If your spasticity and stiffness increases in the cold, it is worth speaking to your MS team. There may be medications that you can take or if you are already using drugs the clinicians may suggest changes to dosage. There are also things you can do at home to help with stiffness, like stretching exercises, yoga or Pilates
  2. Wear layers. The thermal insulation of layers can make sure your core stays warm. We suggest choosing easy to remove clothes, as if you begin to overheated you can shed a layer or two.
  3. Make sure all your equipment and aids are well serviced and ready for the winter. Whether that is a car, a mobility scooter or walking aids, it is a good idea to get them checked out. This may involve lubricating moving parts, checking tyre pressures and ensuring brakes are up to the job. Some people even choose to switch their walking sticks over for Nordic walking poles or something similar with a wider ground surface area. You can also buy ‘ice tips’ to customise your existing walking aid
  4. Drink plenty of hot drinks. Tea, coffee, hot chocolate or whichever is your drink of choice can help you stay warm from the inside, warming your core quickly. It can also help keep your fingers and hands warm whilst you cradle your favourite mug
  5. Keeping your hands and feet warm is really important. Some people with MS have sensory issues or also have a condition called Raynaud's phenomenon, in which the extremities (particularly the fingers and toes) are affected by the cold. Fingers and toes can become bluish looking and be very painful. It is a good idea to plan ahead and get some good thermal socks and gloves and consider keeping your warm socks on even whilst at home. You can also purchase hand warmers of various kinds from outdoor stores
  6. Consider increasing your uptake of vitamin D and make the most of what little sunshine there is. Try to go outside as close to midday as you can and expose as much of your skin as is possible (given the cold!) to the sun. Not only will this help your vitamin D levels but being outside and enjoying the autumnal colours or crisp Jack Frost touched plants will likely be good for your mental health too. If you feel you need to increase your Vitamin D supplements during the winter it is worth reading our Choices leaflet on the subject and speaking to your MS team
  7. Plan for adverse weather. If you have a care package you can speak with your care manager to ensure you have an understanding of any kind of contingencies or emergency plans that are in place in case of adverse weather conditions. It is a good idea to contact your local Adult Social Care department to find out if there are any special plans in place for extreme weather in your area. If you have a family carer or have caring responsibilities yourself, it would be a good idea to get an updated ‘carers emergency plan’ (usually part of a carers assessment)
  8. If you rely on meal on wheels or home delivered meals it is a good idea to do some contingency planning for the possibility that a delivery will not get through. It is always a good idea to have some tins of soup or other non-perishable foods in the cupboards. If you have room in your freezer it is worth making sure there are a few easy meals stored away in there too
  9. Be mindful of colds and your health. If you feel you are becoming poorly, speak to your pharmacist or GP as early intervention is best for managing health. Remember that you are entitled to the flu vaccine from the NHS. You can get this at your GP practice or your local pharmacist
  10. The UK government have produced a leaflet called ‘Keep warm, keep well’ specifically aimed at older and disabled people which is full of useful information about the winter fuel payment, the cold weather payment, the Energy Company Obligation (ECO), the warm home discount scheme and other sources of financial help. The Energy Saving Trust has good advice on how to lower your bills and make your property more energy efficient. They can also advise on grants and schemes available around the UK. They have a helpline you can call on 0300 123 1234

If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.

New Pathways sneak peak: mindfulness, being a carer with MS, mobility and more...

Posted on: October 20 2018

Front cover image of New PathwaysHello,

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. 

Enjoy reading!

Sarah-Jane

Editor, New Pathways

5 hot tips to help you beat the gym and exercise with MS

Posted on: October 19 2018

Joanna Livermore Image.jpgIn 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.

2. Listen!

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!

3. Water!

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

 

Top 5 books about multiple sclerosis

Posted on: August 09 2018

Hello,

As today is Book Lovers Day, I couldn't resist asking staff at MS-UK what their favourite books are about multiple sclerosis (MS).

So, here's the top 5...

  1. The Multiple Sclerosis Diet Book: A low-fat diet treatment of MS by Roy Laver Swank MD, PHD and Barbara Brewer Dugan
  2. Managing Multiple Sclerosis Naturally: A self-help guide to living with MS by Judy Graham
  3. Overcoming Multiple Sclerosis: The evidence-based 7 step recovery program by George Jelinek
  4. The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles by Terry Wahls
  5. Awkward Bitch: My life with MS by Marlo Donato Parmelee

Check out Amazon for the books if you want to!

Happy Book Lovers Day everyone,

Laura

Marketing Manager, MS-UK

 

 

 

New Pathways issue 110 - The Editor's Letter

Posted on: August 01 2018

Hello!Issue 110 Front Cover of New Pathways

This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.

Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.

Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.

Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.

Subscribe today to read all this and much more!

Sarah-Jane

Editor, New Pathways

Guest blog: Shake off the winter months with a nutrient spring clean

Posted on: March 02 2018

In this guest blog, Dr Carrie Ruxton, from the Health and Food Supplements Information Service (HSIS), shares her expert advice for embracing spring with a nutrient overhaul…

carrie-ruxton-approved.jpgMarch sees the first day of spring, but in the UK it can often still feel like winter! The dark, cold months at the beginning of the year can have an impact on our energy levels, immune system and cognitive function, so the start of spring is the perfect time to shake off the winter with a nutrient spring clean.

Dr Carrie Ruxton, from the Health and Food Supplements Information Service (HSIS), says: “We can’t magic up more sunlight in the UK but there are ways we can adapt our diets to get our health back on track for the spring and summer.

My five tips are;

  1. Take a multivitamin, or a supplement containing vitamin C and zinc. Vitamin C and zinc, as well as vitamin D, are known to support normal immune function. When Vitamin C and zinc are taken in combination at the start of a cold, they can knock a couple of days off your symptoms[1],[2]. Vitamin C can also be found in kiwi and citrus fruits, while fish and meat are a rich source of zinc
  2. Energy levels can feel low as winter recedes. B vitamins have a vital role in helping the body to extract energy from our foods[3], particularly carbohydrates. A ‘B complex’ supplement, containing thiamin, riboflavin, B6, B12, folic acid and niacin is a good option, particularly if you are vegetarian or vegan. B vitamins are found naturally in meat, fish and eggs
  3. Perceived energy can also be boosted by taking daily exercise[4], such as brisk walking, dancing or gym classes. This creates endorphin chemicals in the brain which make us feel more positive. Support your active lifestyle by choosing food and drinks rich in polyphenols which support blood vessel function, such as colourful fruits and vegetables, orange juice, tea and dark chocolate
  4. Mental function depends on the ease of chemical messages jumping from one brain junction to another, called synapses. Studies show that the long-chain omega-3 fatty acids found in marine oils help to make this process more effective[5]. Omega-3s can be found in oily fish, such as salmon and mackerel, or fish oil supplements
  5. While we can feel more sleepy and sluggish in the winter and spring, this can often be helped by getting better quality sleep, not necessarily more sleep! Switch off all screen-based entertainment at least an hour before bed, do some relaxing meditation[6] and then enjoy a warm milky drink. Dairy foods contain an amino acid, called tryptophan, which the body uses to make serotonin and help regulate sleep. You can also take a supplement containing 5-HTP.

About HSIS

HSIS (the Health and Food Supplements Information Service) is a communication service providing accurate and balanced information on vitamins, minerals and other food supplements to the media and to health professionals working in the field of diet and nutrition.

Multiple sclerosis and diet and nutrition

Find out more about diet and nutrition in our Choices leaflet on our website.

Remap Essex visit Josephs Court

Posted on: March 09 2017

remap.jpgHi everyone,

Last week at Josephs Court we were lucky to have a visit from our local branch of Remap.

Remap is a charity which produces aids and equipment for people with disabilities where there are no suitable alternatives. The service is free of charge and produced entirely by volunteers and they work throughout the Essex area. Remap Essex are four of 94 local groups spread across the UK.

Peter, Martin and Ashley came along to meet our clients on Wednesday 01 March, and we were delighted to welcome them to our centre. They gave a presentation on the work they do and addressed our client’s questions and afterwards sat with each individual client and made arrangements to visit them to hopefully help with their needs.

Each piece of equipment is tailor made to suit the specific needs of the individual, and they like to work with health professionals like occupational therapists or physiotherapists to make sure the equipment provided meets the needs of each person.

It was great to see our clients coming along to the talk, asking questions about adapting all sorts of things from mobility scooters to back scratchers and repurposing everyday objects to support independence.

Thank you to everyone who came along, and a big thank you to Remap Essex for taking the time to visit us!

Michael Kinton
Centre Manager, Josephs Court

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