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!
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 I become withdrawn and you won’t hear from me for days.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.
If you would like more information about living with multiple sclerosis (MS) you can download our Choices leaflets for free.
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.
MS-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.
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.
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.
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.
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.
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!
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?!
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.
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.
My 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.
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:
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.
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.
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
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’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,
Head of Services