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Guest blog: 5 tips for supporting a friend with a chronic illness

Posted on: December 12 2018

In her latest guest blog, Joanna Livermore shares her top 5 tips for supporting a friend with a chronic illness...Photo of Joanna Livermore

Adjusting to being diagnosed with an invisible illness can be really tough. I have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips!

1. Ask

If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.

2. Check in!

I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. Make sure you drop your friend a regular text to let them know you’re thinking of them.

3. Cut some slack

It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row.

4. Don’t assume

Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Avoid making assumptions about what your friend or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have let them make their own choices.

5. You don’t have to find a solution

With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.

Ultimately, the best thing you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is by doing absolutely nothing differently. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.

Want more information about living with MS?

If you would like more information about living with multiple sclerosis (MS) you can download our Choices leaflets for free.

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

Want to access counselling but worried about the assessment process?

Posted on: November 19 2018

Louise Willis crop_0.jpgMS-UK Counsellor, Louise Willis reveals what you can expect from MS-UK Counselling...

Multiple Sclerosis (MS) can present many physical challenges and some can be identified and treated by the medical profession, but what about the hidden emotional and mental challenges that can be faced?

MS affects around 110,000 people in the UK. Each person affected has a different life story, an individual set of beliefs and values, and ultimately a different way of dealing with diagnosis and the changes that MS can bring. There is no right or wrong way forward, but sometimes some extra support can be invaluable at any stage of MS. From diagnosis to new changes and developments, MS-UK counsellors are here for you every step of the way.

What should I expect from the assessment?

One of our trained counsellors will call you at a time that is suitable for you. We ask that you are alone at this time and in a quiet, confidential place and that you are comfortable as the call can take between 30 and 45 minutes. If you are unable to answer the call straight away, we will always ring back around 5 minutes later.

Is counselling confidential?

Yes, counselling is a safe and non-judgmental space for you to talk about any worries you might have about any aspect of your experience with MS. Any information we take down is kept on our encrypted servers here at MS-UK and is not passed on to any third parties unless you ask us to.

We will only break confidentiality in the event of a safeguarding issue which would mean any form of harm to either you or someone else.

What will I be asked?

We will ask you about what is bringing you to seek counselling and about any mental health issues you may have. We will also ask you what times and days are best for you for your counselling sessions. They will be at the same time and day each week for six weeks.

What happens if I can’t make a session?

If you are unable to make one of your sessions, let us know as soon as you find out and we can reschedule. However, if this is within 24 hours of the session you may forfeit the session as all of our counsellors are booked in advance.

How do I sign up?

Simply go to our website, call our helpline on 0800 783 0518 or ask your MS Nurse to contact us on your behalf.

Next Steps…

After your assessment we will pop a counselling contract in the post, or send it via email for you to sign ready to speak to one of our specially trained MS counsellors.

We look forward to meeting you!

Guest blog: Keep calm and carry on

Posted on: November 19 2018

In her latest guest blog, Joanne Chapman tells us about her recent experiences living with multiple sclerosis (MS)...Photo of Joanne

It’s been a good while since I wrote. I’ve wanted on many occasions but life has been against me. When you live with a chronic illness, it's a constant uphill battle but when life chucks in more challenges, you just want to scream!

It’s that time of year when bugs bounce around. You do things to help to escape illness. I’ve chucked orange juice down me for the hope of that extra vitamin C prevents any illness but I’ve still sounded like Darth Vader. Little man’s nursery has been a hive of germs. You want him to go but battling against bugs is a neverending game. Me, then little man, me again. I think it was tennis germs. My immune system is even more shot to pieces since MS.

keep calm poster imageMy symptoms flare up when I’m sick, especially my fatigue. The MonSter comes back with a vengeance. Big effort! You just want a break. Last weekend, I woke up to not being able to walk. I bought a rollator/wheelchair combo as my scooter broke recently (another story). I needed a back up plan. Good job I did have one. Little man’s daddy wheeled me into church as I didn’t want to miss Remembrance Sunday service. I’ve got a poster used in the war “Keep calm and carry on”. You just remember what others have done to make you, your family and friends safe, and it all blends into perspective.

MS is a pig of a disease. When people ask, 'How are you?' and you reply 'OK', it’s because in the past replying with the truth doesn’t help many and it is easier, less effort to say 'OK'. Everyone has their challenges. You don’t know what they are. That’s the biggest lesson I’ve learnt from having MS. Simply be kind to others. You don’t know what sh*t they are dealing with.

I was recently given some drugs for my MS bladder as an interim solution as I’m waiting for Botox. I had a bad reaction to them, so no longer taking. I should have known as every drug I’ve taken has caused me medical grief. To add insult to injury, we’ve had home leaks to contend with. As the phrase goes, 'It never rains, only pours'. Little man’s daddy asked, 'Is that a joke?'

As you can read it’s been pretty interesting. Maybe I should rename my blog to “ poorly pi**ed off parent”. When I’m feeling rubbish, I think of that war poster “ keep calm and carry on”. That is my option, she says coughing again.

You can read more from Joanne on her blog, Poorly parents.

Guest blog: Gavin's marathon mission...

Posted on: November 19 2018

In April 2019, Gavin King will be taking on the Virgin Money London Marathon in aid of MS-UK. In this guest blog, Gavin tells us about why he’s chosen to fundraise for MS-UK, and how multiple sclerosis (MS) has had an impact on his family...Photo of Gavin, MS-UK fundraiser

‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.

‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.

‘Sitting here now typing this still breaks my heart and brings a tear to my eye.

‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.

‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.

‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.

‘I regret not making the most of the last good years with him while I still had the chance.

My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.

I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’

You can find out more and make a donation on Gavin's JustGiving page

We’re here...

If you have been affected by this story, you can contact the MS-UK Helpline via email, on 0800 783 0518 or via live web chat. We’re here to provide information and support, or just to listen.

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.

Research shout out: Online task to measure cognition

Posted on: October 13 2018

Image of poster for research projectJowinn Chew, a PhD student at King's College London, based at Guy's Hospital, is seeking people affected by multiple sclerosis (MS) to undertake an online task using a newly developed ratings tool. 

In the task, you will be presented with fifty short descriptions of different scenarios. This will be split into ten blocks of five, with a rating task after each block.

Using a 4-point scale, the researchers would like you to rate how similar in meaning each sentence is to the description that you read with that title. The ratings will be used to inform the materials for tasks, and it’s completely anonymous.

You can do the task online using this link: https://kcliop.eu.qualtrics.com/jfe/form/SV_5cAkSnZHlxPZ1nT 

Chew’s research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS. Jowinn Chew is supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.

It is World Mental Health Day

Posted on: October 10 2018

Photo of Diana from MS-UKHello,

It’s World Mental Health Day, an annual day to highlight the importance of looking after your mental wellbeing that is recognised by the World Health Organisation.

To recognise the day, the Prime Minister Theresa May has appointed a minister for suicide prevention. Jackie Doyle-Price will add this to her role as Health Minister to help tackle the stigma surrounding suicide.

Here at MS-UK, we have been told that when it comes to living with multiple sclerosis (MS) the mind is often overlooked. That’s why this time last year we launched MS-UK Counselling, a confidential telephone counselling service for people with a diagnosis of MS.

I wanted to let you know a bit more about it, as it is World Mental Health Day. The only service of its kind, MS-UK Counselling is focused on helping people with MS explore the emotional impact of living with this condition.

It is very common for people to struggle with coming to terms with a diagnosis or dealing with the uncertainty of how their condition may progress. For some, MS-specific counselling is crucial in supporting them to come to terms with their condition, understand their feelings and live positively with MS.

So if you are thinking about your mental health today with all the media attention on World Mental Health Day, do visit our web page to find out more about MS-UK Counselling. Our team of counsellors are here to help and support you,

Best wishes,

Diana

Head of Services

Guest blog: Why mobility is more important than just improving accessibility

Posted on: September 05 2018

Howard Smith, Head of Operations at Your Mobility discusses improving accessibility...

With the recent announcement that the government and a number of major high street brands are backing the UK’s first ever inclusive shopping day aimed at supporting the disabled and immobile, accessibility in our cities and towns will be vastly improved for those with multiple sclerosis (MS).

Called ‘Purple Tuesday’, the innovative scheme will take place on 13 November and will see retailers including Argos, Asda, Sainsbury's and Marks & Spencer introduce new measures to make shopping a more comfortable experience, especially for those in mobility chairs.

But whilst this is much-needed progression, many people are unaware of the experiences that approximately 10,000 MSers deal with before they can even enjoy the luxuries of shopping and eating out – things we often take for granted.

For instance, someone who has the condition may have to rely on a wheelchair or mobility chair as a means of getting around. Unfortunately, this can involve a lot of hoisting, such as from a bed to a chair, which can put a considerable amount of pressure and strain on loved ones.

Once in the chairs, accessibility can still be an issue. If the chair can’t be modified, for example, simple tasks such as going out into the garden, or even entering the lounge or living room from the bedroom to spend time with family and friends can become an unnecessary challenge.

If an immobile person is deprived of accessibility for a prolonged period of time, isolation and loneliness can become a daily issue. In the worst-case scenario, a lack of accessibility can have a detrimental effect on the person’s mental health, with illnesses such as depression arising from feeling as if they have no freedom or independence.

So, it is important to remember that mobility is about more than just making places accessible. Yes, chairs the immobile use must be inclusive to utilise accessibility, but ultimately, they need to ensure the user is kept comfortable and safe.

A bespoke mobility chair, for instance, can be adapted to cater to an individual’s specific needs. Adjusting a specialist lounge chair to suit the user’s environment or varying physical needs, will make spending quality time with family and friends a more comfortable and accessible experience.

As well as being portable, multi-adjustable, with tilt in space capabilities and light in weight, bespoke chairs can provide those with MS with a greater sense of independence and freedom, while offering the highest level of security, safety and stability.

Overall, as a nation striving for more inclusivity, we must make mobility more comfortable for those with MS. Yes, retailers recognising the need to better improve accessibility for mobility chair users is fundamental in reaching our ultimate goal of creating a fully inclusive society, but we must also endeavour to make the user’s quality of life as comfortable as possible both in and outside of the home.

Let’s continue to talk about accessible shopping to raise awareness. Why not share your good and bad shopping experiences, or what mobility aids make shopping possible for you. Visit out Facebook page to add your comments

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

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