Whether you’re newly diagnosed or not, there will be more than one occasion when you ask yourself this question. So how do you tell if you’re having a relapse?
If you have multiple sclerosis (MS) relapses are a big part of your condition. Typically relapsing remitting multiple sclerosis is characterised by relapses. However, even if you have secondary progressive or primary progressive MS you could still experience them, but perhaps less frequently.
A relapse can be defined as a sudden episode of new or worsening symptoms over a period of days, weeks or months.
What constitutes as a relapse?
Everyone is different and it can be difficult to recognise a relapse. Symptoms associated with a relapse can include: fatigue; pain; muscle stiffness or spasms; balance problems; weakness; numbness and tingling; bladder and bowel problems; changes to vision, thinking and memory and coordination issues. You may experience one or many of these symptoms at any one time.
New symptoms can develop, or those that you have previously experienced can worsen during a relapse and they can appear slowly or suddenly. To qualify as a relapse, symptoms must last for more than 24 hours and last for at least 30 days from the start of your last relapse. It is important to inform your doctor or MS nurse about your symptoms, so they can offer advice and treatment if necessary.
It is also important to rule out any other reasons for the symptoms you are experiencing. Infections, heat and stress are all common factors that are known to make MS symptoms worse and once treated symptoms may subside.
Write it down
It can be helpful to keep a symptom diary. Documenting the symptom, how long it lasts and how it affected you, for example, can help you define whether it is a relapse or not, and will also give your neurologist and MS nurse a clearer overview of how you experience MS and what they can do to help. Track your symptoms using the MS-UK symptom diary. Click here to download your free symptoms diary.
A relapse is a result of inflammation in the immune system damage to the myelin, otherwise known as demyelination. Demyelination can slow or block the messages sent via the central nervous system, which as a result can cause the number of symptoms listed previously. However, inflammation doesn’t always cause a relapse. It can occur on other parts of the brain that aren’t associated with symptoms and the brain may be able to reroute around inflammation, this type of inflammation is known as silent lesions.
What should I do if I am having a relapse?
Relapses can be a sign that your MS is more active so it is important to report each one, even if you don't think you need medical treatment. Report it to your GP, MS nurse, or neurologist, who will then advise you on the best cause of action.
Multiple sclerosis blogger and influencer Martin Baum reflects on life with MS
There’s little doubt that much has changed since I was first diagnosed with multiple sclerosis (MS) back in the 80s. Today there’s more information, recognition and understanding but what does that really mean to any newly diagnosed young person? Well, if my journey through an illness with more twists and turns than the Hampton Court maze is anything to go by, not a lot.
What I still remember at the inception of diagnosis was how my mother, with the best of intentions, inadvertently began the process of putting my life on hold. She was always concerned about what might happen. My aunt, her sister, had MS. She was in a wheelchair which only added to the fear of an uncertain future for her son.
A negative ‘what if’ mindset was being formed and it was scary. Yet despite all her worst-case scenarios it took over thirty years for me to reach the secondary progressive stage of MS and writing this blog, has given me pause for thought all these years on.
A fundamental issue I have with MS is that it’s easy to forget what we can still ‘do’ and what we are able to achieve. The older we get the harder it can be to get on with life because sometimes MS makes simple tasks more difficult. But as far as it goes, the newly diagnosed youngster needs to be reminded that they are still essentially the same person as they were before being labelled.
There’s a line from Tashauna, a song by the Rossington Collins Band that goes ‘if you believe that you are weak, then weak you'll surely be’. A friend played me the song years ago at a time I was struggling with my diagnosis – it wasn’t the first time and it wasn’t to be the last where I felt I was out of my depth - but that lyric has stayed with me almost as long MS has.
Just because the worst-case could happen, it doesn’t necessarily mean that it will. Having MS is like climbing Mount Everest. Not everyone reaches the summit. For others who are at relapsing remitting, secondary progressive and primary progressive base camps it’s anyone’s guess how far up the mountain they’ll ascend. But until then, until you get there or if you get there, the only advice I would offer to any young person is this – it’s better to live a life, not MS.
MS-UK Counsellor Rachel Murray reflects on the uncertainty of living with multiple sclerosis
We travel through life with varying degrees of and awareness of uncertainty. We like it when we feel certain - it feels safe - and we don’t like the anxiety and fear that uncertainty can bring – for many of us it feels scary and unsafe.
A diagnosis of multiple sclerosis (MS) and living with MS increases the uncertainty experience! Symptoms can be unpredictable and may or may not be connected to MS. Never knowing when a relapse may come along can be daunting, uncertainty about treatment options and their uncertain long and short term effects, uncertainty about MS in workplaces, MS in family life, and MS in the future. All of these are thought about through the lens of uncertainty and may frighten and worry us.
Living with uncertainty as a constant companion can be exhausting and frightening but what if the lens is changed so that uncertainty is viewed as an adventure, as a path we did not expect to be on but as we are… then let’s see what’s around the next corner and make the most of the journey anyway. What if uncertainty becomes openness with curiosity and a willingness to see what unfolds. What if we start to welcome and embrace uncertainty because it opens up a different experience and viewpoint?
What if you meet the challenge of processing and experiencing the journey with MS by choosing the lens of adventure and curiosity over the lens of uncertainty? You may find yourself being surprised along the way.
“Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity.” — Gilda Radner
To find out more about MS-UK Counselling or sign up, visit www.ms-uk.org/counselling.
Diana Crowe, MS-UK's Head of Services, met locally with H Goodwin, Suzanne Howe and Amy Melton from United in Kind, an organisation which is aiming to put an end to loneliness in our communities. It was great to share with each other about the work we have been doing.
There are eleven United in Kind coaches in total whose roles are to connect communities through kindness to reduce loneliness and social isolation.
It was interesting to hear how the coaches are building relationships across Essex with hundreds of community, charity and voluntary groups to reconnect communities.
The organisation needs everyone in the community to come together, so if you know of any community activities that might be of interest to others in your area, please share by sending an email to email@example.com. Local coaches can also help set up activities in your area. To find out more about your local coach go to www.unitedinkind.org.
You can follow United in Kind’s activity on social media using the hashtag #UnitedinKind and by visiting www.facebook.com/unitedinkind, www.twitter.com/unitedinkind and www.instagram.com/unitedinkind.
On 04 November our Head of Services Diana Crowe, and Laura Amiss-Smith from our MS-UK Helpline attended the 23rd MS Trust annual conference. This year the focus was on the needs of people with multiple sclerosis (MS) from point of diagnosis to end of life, whilst highlighting the importance of delivering holistic care to everyone with MS.
We had an exhibition stand for a day and we were able to talk to a variety of health professionals, including MS specialist nurses, occupational therapists (OTs) and physiotherapists about the work of MS-UK. We promoted our counselling service and Choices booklets, both of which generated a lot of interest, which was great!
We were both able to attend a couple of the seminars. Diana attended one on ‘MS and work – staying in work and leaving work well’ which was led by two clinical specialist occupational therapists from London. They shared some interesting facts about how 60 to 80 per cent of people with MS lose their job within 15 years because they struggle with fatigue, reduced mobility and cognition. They talked about the barriers to work which included attitudes of employers, demands of the role and activity limitations. The OTs spoke about the importance of early intervention, support to manage work performance and liaison with employers around reasonable adjustments which are just some of the things that can help people with MS to remain in work. The MS-UK blog recently published an article on this same topic.
Laura attended a seminar on ‘The pregnancy year – implementing a MS pregnancy service’ which was delivered by a consultant neurologist, MS specialist nurse, specialist midwife and Sally Darby, founder of Mums Like Us. Discussion was around how to support a woman from the moment they mention their wish to conceive, right the way through to after the baby is born. They also talked about the support for men when discussing drug therapies and their potential impact on reproduction. A personal story was shared by Sally Darby and was very inspiring. She spoke of the importance of community after she found pregnancy and becoming a new mum isolating, with not much support for the disabled mother. She founded an online network called Mums Like Us in 2017 after the birth of her second child.
It was a great to be in the company of so many who work within the MS community.
Blogger Martin Baum was invited to an event at the House of Commons recently to launch a campaign. Here is his story of his experience...
In an age where blogging is a symbol of 21st century communication, the aim is as much for a blog to be read as it is to be written. As a multiple sclerosis (MS) blogger for various MS-related organisations I am no exception as I continue to try to engage with a loyal and growing readership.
As a writer I enjoy what I do very much but just like having MS it’s a lonely existence. However, sometimes, the unexpected does happen. I recently received an invitation from a charity called Overcoming MS (OMS) to attend a reception they were hosting at the House of Commons.
It was to launch a new campaign video giving everyone living with MS hope of recovery and it was not something I was going to pass up. The reception was sponsored by Stephen Lloyd MP and held in the Strangers Dining Room.
The person behind the promise of living a life free from MS was Professor George Jelinek, an Australian who devised the OMS seven-step recovery program which has enabled him to remain symptom free for 20 years. In truth, however, I was sceptical. Ever since beta interferons failed to sustain the promise of being the cure, I have become naturally wary of anything being promoted as such.
On reading more about Professor Jelinek’s regime prior to my trip to Westminster, it occurred to me my own lifestyle was already accommodating much of what he was advocating. The seven-step program is about following a strict curriculum of diet, sun, vitamin D, exercise, meditation, mindfulness, approved modifying medication, helping to prevent family members from getting MS, and changing a lifestyle for a healthier one.
Whilst I am not vegan I eat very little meat, preferring fish instead. I meditate regularly for ten minutes a day, I exercise as much as I am able to and enjoy the benefits of mindfulness. Most of all, I’ve been changing my lifestyle for a healthier one for several years which means, should I ever want to fully engage with the program, I’m only a couple of steps shy.
That afternoon I met many MSers sharing a happy disposition to be living with the condition because their symptoms were no longer an issue. Many claimed their lesions had been repelled and that they were now leading happier MS-free lives as a result of following OMS.
Throughout the afternoon I mingled with many inspirational people. Just like any of us, neither MPs nor nobility are immune from being touched by MS because they have family and friends affected by it. Stephen Lloyd’s reason for being there was because he had a constituent who had MS who also follows the OMS approach. That was reason enough for him to sponsor the event.
As the afternoon ended and I parted from some truly inspiring people, I was left feeling that the OMS seven-step recovery program had already succeeded in helping many people. But then my thoughts turned to those who weren’t but might have benefited if they had.
Having MS is a game of patience. We bide our time in what often feels like an isolated existence, waiting for a more traditional breakthrough in the quest to find a cure for the condition. I’m left feeling that more MSers should at least try something like the OMS approach that’s as near to organic as it gets.
It’s National Stress Awareness Day, but we all know it’s important to take stock of your mental health not just today, but every day.
Stress affects us all at some point and avoiding it completely can be nearly impossible. But taking steps to reduce it and manage your response to it, can be extremely beneficial. Research has shown that it can even help prevent new disease activity in people with multiple sclerosis (MS).
So if you’re craving a little more relaxation, read on.
Research has shown that meditation and yoga can reduce stress and cause changes in the brain that allow more stress resilience. Meditation slows the heartbeat and calms the mind, leaving you in a relaxed state. You can find free guided meditations online. Try www.freemindfulness.org/download
The role of exercise in helping reduce stress is well proven. One study found that exercise can not only help you manage it in the present, but it can also act as a buffer to protect you from future effects, too.
Personal trainer Dom Thorpe specialises in exercise for people with MS and offers an ‘MS Warrior’ programme online. Visit www.dt-training.co.uk/ms-warrior-programme/
Pile your plate high with prebiotics, because there is evidence that these feed the good bacteria in your gut, and improve the physiological impact of stress. Prebiotics are fibres found in foods such as chicory, Jerusalem artichokes, raw garlic, leeks and onions. When this fibre is digested by beneficial gut bacteria, the microbes release byproducts which researchers think influence brain function.
Prebiotics were also found to increase the amount of rapid-eye-movement (REM) sleep that happens. REM sleep is believed to be critical for promoting recovery from stress, with research showing that those who get more REM sleep after a traumatic event are less likely to experience post-traumatic stress disorder.
Finally, when you’re in need of a snack, you could do a lot worse than to reach for a handful of walnuts. A study found these tasty nuts and their oil may help prepare the body to deal with stress. Other studies have shown omega 3 fatty acids, such as the ones found in walnuts, can reduce bad cholesterol and inflammation markers in the body.
For more information about living with multiple sclerosis, subscribe to New Pathways magazine, your MS magazine of choice.
Travelling with a Carer: What are your options?
Are the dreary winter weather and dark evenings making you dream of sunnier climes? The world is your oyster, says writer Ella Hendrix.
Travelling or going on holiday is one of the delights of life. But, just because you need extra help, it doesn’t mean that you can’t enjoy getting away to see and experiencing new things.
It might seem difficult, but, with a bit of careful planning, anything’s possible. Although going away on your own could be an option, if you make use of a carer in your everyday life, there is also the possibility of travelling with them. There are some CQC regulated care companies that make travelling with your live-in carer possible. With this in mind, you might be able to go to places that you otherwise wouldn’t, as your carer understands your needs and limits.
Trains, planes and automobiles…
As long as you’re planning on travelling by (fairly) conventional means, you shouldn’t have a problem in most parts of the world. International flights, flights within Europe, long-distance planes, and ships should all be well equipped for everyone, including people who have limited mobility, but it is important that if you do have mobility issues you make a travel agent, airline or booking company aware of it.
You might have more difficulty if you are going to a third world country, as they often will not have the same infrastructure as we do here. However, there are usually ways around this, so speak to a booking agent to see that they can do. Make sure that you tell them that you’re travelling with a carer as this might make things easier.
One big worry for many people, when they go away, is what to do about their medication. If you are travelling with a carer you can ask them to look after your medication but there are still some things that need to be thought about in advance.
Make sure that you carry a doctor’s note and a copy of your prescription so that you can show that you are meant to have it on you, and so that you can get hold of replacements should the worse happen
Make a note of your medicine’s generic name as well as the brand. Many countries use different brands to us here in the UK
Take your medication in its packaging to leave no doubt about what it is.
Remember if it is a liquid to carry it in a clear plastic bag if you are flying
If your medication requires refrigeration you should take it in a cool bag with ice packs that last until you get to where you are staying. If you don’t have your own fridge where you are staying, speak to the management of the place to ask if you can use theirs
Carry medication in your hand luggage
Holidays in the UK
Holliday villages, trendy hostels, hotel spas and well-established hotels are good options. They are usually well equipped for people with health issues and have staff who know exactly what to do to make your stay an enjoyable one. These places are usually fully fitted with wheelchair access, have rooms which are suitable for less mobile people or those who need extra help, and are dedicated to ensuring that everybody has a good time.
It is always a good idea to get travel insurance, especially if you are going abroad. This is especially important if you have a pre-existing medical condition or specialist equipment that you want to take with you.
If you’re older, specialist insurance for the over 50s can be useful as it is more tailored. You should also remember that, whilst the UK is still in the EU, a European Health Insurance Card (EHIC) can be used alongside (but not replace) your travel insurance. This means that you can get access to state-provided healthcare if you are in an EU country.
There are many benefits to gain from going away, and with a carer, you can find the whole experience enjoyable and not too stressful – just as it should be.
This week is National Work Life week, which is all about focusing on wellbeing at work. You might be thinking about talking to your employer about your MS, but just what is the best way to inform them? Rebecca Armstrong, MSer and HR specialist reveals what to consider and what to expect
One of the hardest questions that I get asked on my Facebook group is ‘should I tell my employer?’ The issue of disclosure is a tricky one, particularly as you won’t know if you have done the right thing until it’s too late. What is true is that once you have done it there is no going back, but remember that can be a good thing. So, if you decide to disclose you then have to decide who to tell and how to do it. In this blog, we focus on these important questions and provide you with some guidance on how to make this important disclosure.
Before you arrange to speak to work, it’s a good idea to prepare what you will say. It is important to remember that multiple sclerosis (MS) can be difficult to understand and so you may need to explain exactly what it is and most importantly how it impacts you. Think about examples of how it impacts your work (if at all) that can help explain.
Be prepared for the response, we have all been frustrated with comments such as ‘you don’t look unwell’ or ‘my Aunty had MS and…’ but often this is someone’s way of trying to make sense of something. When we don’t understand something, we will try and relate it to something we do and often these (insensitive) comments can simply be that. Think about how you can pre-empt such comments by being prepared, for example, ‘MS is different for every person, in fact, no two people are the same, the impact it has on me is…’
Consider taking some resources with you, MS-UK has a range of leaflets available on its website which you can print or provide links to. These are a useful way of providing information in a simple way and of course you could take a copy of the MS-UK magazine, New Pathways!
It is also a good idea to think about what (if anything) you need in terms of reasonable adjustments. Your employer has a legal obligation to make reasonable adjustments, by being clear about what you need it will help this process. Of course, for many of us, we may not need adjustments straight away. Consider requesting a regular review (if you don’t have this already), so that if this changes you can discuss what is needed.
Once you have decided what to say, the final consideration is who to tell. Typically this would be your manager as they will be the person who supports you day to day. You can expect that they will need to tell the HR department so that you can make sure you are properly supported. They may ask you who you want to know about your MS at work and of course you can choose that you do not want anyone else to know about it.
Disclosure is a big step and one which is entirely your choice, you are not obliged to tell your employer about your MS. However, if they are not aware then they will not be able to support you.
To continue the conversation and discuss any other MS work related issues join Rebecca’s MS & Work group on Facebook.
Today is World Mental Health Day and our MS-UK Counselling team are looking at common mental health myths head on…
Myths and beliefs about mental health issues can be instilled in us from an early age. These myths and beliefs are not designed to harm – they are passed to us in good faith mainly from parental figures, care givers and the environment in which we develop. These myths are designed to protect us from emotional issues rather than support us. The result is that we learn how to suppress our emotions rather than express them. Here are some common myths we often come across as counsellors with MS-UK…
Myth 1 - Mental health problems are rare
Mental health problems are widespread. According to Time to Change, around one in four people will experience a mental health problem each year and they can affect people from every walk of life.
Myth 2 - I can’t do anything to support someone with a mental health problem
The simple response here is, yes you can!
Ask how somebody is doing. It’s highly unlikely that you will make things worse. In fact, it may be that your relative, friend or colleague needs to talk to somebody and you ask them how they are doing helps them to open up about how they are feeling
People want to feel heard. You offering a listening ear can often help more than you realise. Try not to judge what the person is saying, even though what you are hearing may be shocking. They are being brave talking to you
Sometimes the person may feel worried or feel embarrassed about what they may have shared with you and wonder how you are going to act around them going forward. Try and treat them in the same way as you did before they opened up to you
It is OK to ask if somebody wants to talk more than once. It may be that the first time you asked them they didn’t feel able or ready to talk but they feel able to talk now
Myth 3 - People experiencing mental health problems aren’t able to work
People living with mental health problems can hold down a successful job. If one in four people experience a mental health problem each year these statistics suggest that in fact we probably all work with someone who is experiencing a mental health problem.
Myth 4 - People with mental health problems can’t recover
People can and do recover from mental health conditions and recovery means being able to live, work, learn and participate in the community. There is lots of different support and help available to help people recover.
Mental health problems may not go away forever but lots of people with mental health problems still work, have families and friends, engage in hobbies and interests and lead full lives.
These websites offer support:
Myth 5 - People living with mental health conditions are usually violent and unpredictable
Most people living with mental health conditions are not violent. In fact, somebody with mental illness is actually more likely to be a victim of violence than to inflict it. According to Time to Change, the movement working to end mental health discrimination, the majority of violent crimes are committed by people who do not have mental health problems. It also states people with mental health problems pose more of a danger to themselves than to others, with 90% of people dying through suicide having experienced mental distress.
Myth 6 - Young people just go through ups and down as part of puberty – it doesn’t mean anything
One in eight young people experience a mental health problem, according to the NHS’s Mental Health of Children and Young People 2017 report. This statistic is widely thought to just be the tip of the iceberg. You may find it helpful to look at the charity, Young Minds. Visit www.youngminds.org.uk/.
Myth 7 - People with mental health problems are lazy and should try harder to snap out of it
This is not true. There are many reasons why someone may have a mental health problem and being lazy or weak is not one of them. People cannot just snap out of a mental health problem and many people may need help to get better. This help may include counselling, medication, self help and support from friends and family.
Mental health and multiple sclerosis
Depressive disorders occur at high rates among patients with MS and this can have a major, negative impact on quality of life for people living with multiple sclerosis, according to a study. However, counselling can be helpful in finding ways to talk about thoughts and feelings associated with MS.