MSer and HR expert Rebecca Armstrong reflects on how lock down could lead to positive progress in the workplace
During this period of lock down, the world has had to adapt overnight. Restrictions have meant that work for many has looked very different and employers have had to embrace this and put in place measures. In this article, I reflect on how this may help employers understand multiple sclerosis (MS) and similar conditions and, importantly, how this might create benefits for people with MS longer term.
When it comes to resilience (that is, the ability to bounce back) and how able we are to cope with changes, we could argue that MS gives us a head start. We have been training for this since diagnosis and are used to having to adapt to new circumstances, often with very little notice.
When we reflect on the last few months there are a few things that occur to me.
One of the most significant changes most employers were asked to make was to allow people to work from home if they could, and to support them to do so. This really challenged the mind-set of many employers who had, until that point, opposed working from home. Many felt that homeworking as standard practice was a bad idea, which was damaging to teams and that people may take advantage of the situation. In my experience of working with people who have MS to help them obtain reasonable adjustments, this has been a consistent barrier, with many employers reluctant to take the step.
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Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
This week, the government has released further advice and is sending letters out to 1.5 million people in England deemed most vulnerable due to health conditions.
This is known as ‘shielding’ and people who fall into this category will need to self-isolate for at least 12 weeks from today.
The most vulnerable
It’s possible some people with multiple sclerosis (MS) will fall into this category if they are taking disease modifying therapies, as included in the category is ‘People on immunosuppression therapies sufficient to significantly increase risk of infection.’
The government say the following people are most at risk from COVID-19 and must follow the measures -
1. Solid organ transplant recipients
2. People with specific cancers
• people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
• people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
• people having immunotherapy or other continuing antibody treatments for cancer
• people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
5. People on immunosuppression therapies sufficient to significantly increase risk of infection.
6. Women who are pregnant with significant heart disease, congenital or acquired.
The NHS in England is directly contacting people with these conditions to provide further advice.
If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician.
Visits from people who provide essential support should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus. Here is government guidance on home care provision. All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often whilst they are there.
MS-UK Counsellor Kerry Trevethick offers her advice
With COVID-19 continuing to spread, the Government has started to implement social distancing. This means increasing our distance from others including avoiding social places such as pubs, theatres and gatherings, avoiding unnecessary travelling and working from home where possible. For people living with multiple sclerosis (MS) and some groups of people, the advice is that they should self-isolate and stay at home for up to 12 weeks.
Whilst these measures are supposed to protect the most vulnerable in our society and slow down the spread of the virus, they can have a detrimental impact on our mental and emotional wellbeing. Below are some tips that may help you manage your mental health during this difficult time.
Try to spend some time in nature. The advice is, you are currently able to go for a walk if you keep a safe distance from other people. If you are unable to do this then try to get outside – spending time in the garden or on a balcony can be helpful. If this isn’t possible try sitting by an open window and watching the birds and trees.
Mindful activities such as colouring in, guided meditation and puzzles, for example, can help you manage anxiety. There are several apps that can help with this such as subscription apps like Calm and Headspace along with some free apps such as Elefriends and What’s Up? All can be found on the app store on your phone or tablet device.
Limit the amount of time you are reading or watching the news. You may also need to limit your use of social media, as there are lots of negative stories at the moment which may make you feel more anxious.
Keep to a routine. It may be tempting to sit in your pyjamas all day if you are not going out, but a routine can be important for our mental health. This includes regular meal times, setting up a structure for working and getting up and going to bed at healthy times to ensure you are getting enough sleep, along with finding some time for leisure. It is important that you also do enough in the day to stimulate yourself rather than using the time to lie in bed or sleep.
It may be tempting to spend more time in front of a screen, be that the computer, TV, phone or tablet. Make sure you are doing other things such as reading, listening to podcasts, arts and crafts, baking, or doing your favourite hobby.
Keep connected. Just because you are self-isolating, this doesn’t mean that you have to cut yourself off from everybody. Keep connected with your friends and family via phone, email, video call or social media.
Talk about your feelings, anxieties, worries or concerns with friends or family members. If this isn’t possible then try using a helpline such as the Samaritans on 116 123. If you have any worries about how this may impact your MS then call the MS-UK Helpline free on 0800 783 0518 or think about accessing the counselling service.
Lots of people in communities are offering help at the moment, be that going to the shop for you, or for a friendly phone call – if you need the support, please use it, you are not a burden.
Try to maintain a healthy diet and keep as physically active as possible.
Remember that these measures are just temporary, they will pass, and it is important to look after yourself both physically and emotionally at this time.
The MS-UK Helpline team have been working really hard to answer all of your questions around how coronavirus will affect your multiple sclerosis (MS). Here are some of your frequently asked questions answered.
I’m taking a disease-modifying drug for my MS, does this leave my immune system compromised?
The answer to this question depends on which MS drug you are taking. Some will leave you with a weakened immune system and others won’t. The MS Society published some useful guidance on which drugs leave you most susceptible. Click here to read more. For more information about coronavirus and disease-modifying therapies in MS the Association of British Neurologists (ABN) has also released some guidance.
I have MS but do not take any immunosuppressant drugs, how will coronavirus affect me?
For the first time yesterday, the PM announced that people with MS should be practising social distancing. Social distancing encourages those that can to work from home, avoid large public gatherings and public transport, and avoid anyone displaying symptoms. Click here for more information.
Someone in my house is living with multiple sclerosis. What can I do to protect them?
You can also practise social distancing with them to reduce your chances of contracting the virus and bringing it home. Taking it one step further, the person living with MS in your house could self isolate in one room away from the rest of the household to further limit their chances of contracting the virus. Click here to see the guidance on social distancing and self-isolation.
For the latest information on coronavirus, visit www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.
In the latest issue of New Pathways, we look at the ways animals help people living with a long-term condition like MS. Here, one MSer tells us what her pets mean to her - read the rest of the article in the magazine.
“Having my animals means I have a responsibility to look after them,” explains MSer Ann Kerr. “I have to go out each and every day to them. I may not feel the same every day, but they don't know that, they need me. No matter how I feel in the morning, my animals are pleased to see me, and I always feel better for being with them. They don't comment if I'm a bit slower today, they accept me and are always pleased I'm there.
“I can, and do, spend all day with my animals, I never get bored, they are all different and all have different needs, but all of them give pleasure to me.”
Living in Scotland, Anne says she has a determined streak that means she won’t let MS beat her. “I ignore it and get on with life,” she says. “A neurologist told me about the Ashton Embry Best Bet Diet and I’ve followed it ever since – I don’t take any medication. Having my animals keeps my mind busy and active – I still muck my horses out, and ride.”
Anne took up riding as an adult, which she says is later in life than most keen riders, but was a natural and even took to endurance riding, covering vast distances on her pony, Tia. “Endurance riding is like orienteering on horseback – you are given a map and various check points and off you go.
“Tia came to me as a general riding pony, but we developed into a very good endurance riding team, doing distances of up to 50 miles at a time!”
Anne still has Tia, who has been with her around 18 years, and who she calls a “very good friend.” Also trotting around is Midge, a 37-year-old retired Shetland pony. “She came on loan from a friend to keep Tia company, and the friend has let her stay here as she is very happy with Tia,” explains Anne.
There’s also Saffie, a 10-year-old highland pony that Anne has had for four years. “She’s my youngster, a very gentle pony who follows you around like a puppy.” Saffie is the only pony Anne rides now. “I feel very safe riding her, and she adapts to whatever the rider requires. Due to mobility, I need to use a mounting block (a tall box which the rider stands on for ease in getting onto a horse) and she stands still and is very patient while I get on.
“Then there’s Bess, my 14-year-old collie-lab cross. She goes everywhere with us and again, is a very gentle girl. I’ve had her since she was tiny. I was riding Tia through a local farm when the farmer offered to show me the puppy he had left from a litter and it was love at first sight! She's never put a paw wrong since.
“Finally, I have Scoobie, a 12 year old ginger cat who came from the same farm that I got Bess from. I was then banned from going through that farm by my husband!
“They are all such good animals, so loving, well-behaved, calm and quiet, and they all come when they are called.”
Keeping active with MS
It’s clear Anne deeply loves her animals, but they offer more than just love, they give her a purpose and something that takes her mind off of having MS. “The animals ensure that I'm active every day,” says Anne. “It might not always be the same level of activity, but I'm always active, always needed and always having to plan their wellbeing.
“They keep my mind active and focused because I have to plan what I'm going to be doing every day, what I'll need, for example, do I have everything the animals need in, or do I need to order feed, and so on. Physically I need to look after the stables on a daily basis, I groom ponies, I pick feet out, clear the fields, and that's just the horses – the cat and the dog also need to be looked after and exercised. There are no days off for me – not that that’s a problem!”
Doing Veganuary, or just fancy cutting down on meat? Try this delicious Chinese-style meal from the ‘£1 Chef’ Miguel Barclay, famous for creating delicious recipes on a shoestring. Perfect for tight January purse strings, this meal costs just £1 per serving.
Chinese-style oyster mushrooms
You can make this dish with any type of mushroom, or any veg really, but I find oyster mushrooms have a wonderfully meaty texture that make this a satisfying and substantial alternative to a Friday night Chinese takeaway.
½ mug of basmati rice 1 mug of water
Handful of oyster mushrooms
Splash of sesame oil
1 garlic clove, sliced
Squeeze of golden syrup or honey
Squeeze of sriracha sauce
Pinch of sesame seeds
½ spring onion, sliced
Put the rice and water in a saucepan and cook over a medium heat with the lid on for about 7 minutes, until all the water has been absorbed and the rice is cooked.
Meanwhile, pan-fry the oyster mushrooms in a splash of sesame oil over a medium heat for a few minutes, then add the garlic and fry for a few more minutes until the garlic starts to brown. Add the golden syrup and sriracha and simmer for a few minutes until the sauce starts to thicken, then stir in a splash of soy sauce.
Serve the mushrooms on a bed of basmati rice and sprinkle with the sesame seeds and spring onion.
Extracted from Miguel Barclay’s Meat-Free One Pound Meals, Published by Headline, £16.99.
Wellness coach and Director of Work.Live.Thrive Zoe Flint, discusses what you can do to boost relaxation which can help boost your immune and central nervous systems
The first thing to do is to prioritise relaxation as an essential part of your health. My experience of delivering mindfulness courses for MS-UK, has shown me that very few clients typically think of themselves first. The vast majority are far more concerned about their family and friends than their own wellbeing. Whilst this is a lovely quality, “you can’t pour from an empty cup”, as they say. In order to be there for friends and family, we must prioritise our own wellbeing. There are many practices you can try, and below are my top recommendations for beginning to develop your relaxation practice. Give each a try and see which you enjoy most, set yourself some time daily to practice (like learning a musical instrument, learning a relaxation practice takes motivation, determination and regular practice, enabling your brain to physically rewire itself and prime your mind and body to be able to habitually slip into states of relaxation).
Probably the most important and effective way to induce the relaxation response, setting time aside to breathe slowly, deeply, and extending the out breath has remarkable effects at reducing stress, anxiety and panic
Try it - Breathe in slowly, filling the lungs completely to a count of 5. Breathe out, slowly and completely, to a count of 7. Repeat until you feel a noticeable sense of relaxation. Struggling? Download ‘Breath2Relax’ at the App store.
2. Learn Mindfulness
Mindfulness is a brain training meditation practice that originated in Buddhism 2,000 years ago. There is a wealth of research into its effectiveness at reducing stress and anxiety, increasing focus, reducing pain, boosting the immune system, reducing fatigue and increasing a sense of acceptance. There are also studies specific to MS that show a decrease in symptoms.
Try it - Sit comfortably, in an upright position. The aim is to be relaxed but alert. Start by taking a few slow, deep breaths, letting go of any thoughts of worry, lamenting or busyness. Spend a few moments focusing on the sensations of breathing. Feel the air as it enters your nose; the temperature, the quality. Focus on its journey down into the lungs. The movement of the body and rib cage as you inhale and exhale. Notice the change in temperature of the breathe as you exhale. Struggling? Download the Apps ‘Calm’ or ‘Insight Timer’.
3. Progressive Muscle Relaxation
In addition to producing a feeling of calmness and relaxation, this technique helps you to notice areas of the body where tension is held and can ease headaches, muscle stiffness and bring a fresh supply of blood to important muscles.
Try it - Start with your feet and work up towards your head. Scrunch up your toes, hold, and release. Flex your feet, hold, point your toes, hold, and relax. Squeeze your calf muscles, release. Squeeze your thighs, relax. Attempt to pull your tummy button towards your back. Hold, and release. Squeeze your shoulders up to your ears, hold. Let go. Make fists with your hands, tense them tightly, hold, release. Clench your jaw, hold and relax. Sit for a few moments, absorbing the benefits of the practice. Struggling? Search ‘Progressive Muscle Relaxation’ on YouTube.
4. Visualisation Techniques
Where’s the place you find the most relaxing? A beach, a walled garden, a meadow, a lagoon? Wherever it is, you can go there in your mind.
Try it – Imagine the most relaxing place you can, using all your senses – what would you smell, hear, see and feel? Warm sun on your face, birdsong, cool, soothing water or soft grass under your feet? Let your imagination go wild and spend some time each day in your relaxing place. Struggling? Search YouTube for ‘guided relaxations’.
5. Fun and Laughter
So good for our immune systems and wellbeing in general, fun and laughter are often little prioritised in our busy lives. What makes you laugh? Can you make a list of films, podcasts, friends, activities and books that make you laugh out loud? Laughter released pain relieving endorphins and helps us bond with others.
Try it – Use your list to do something daily that you find fun and induces laughter. Struggling? Try a laughter yoga class!
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.