MSer and HR expert Rebecca Armstrong has advice on returning to work for those who have been shielding
Everyone with multiple sclerosis (MS) is classed as vulnerable under the COVID-19 government guidance however, some people with MS have been considered extremely vulnerable and for the past three to four months have been shielding. The government has now decided that people should stop shielding from 31 July. For many people this is an extremely stressful time as the expectation shifts towards getting back to work. Firstly, we must remember that even though shielding is ending, the virus is still active in the country and people with MS are classed as vulnerable.
Duty of care
Employers have a duty of care for the wellbeing of their employees and are obligated under The Equality Act 2010 to make reasonable adjustments. Furthermore, the COVID-19 guidance requires that a full risk assessment is completed within every business (and where there are more than five people, this needs to be a written assessment). Within this, consideration needs to be made regarding how all staff will be kept as safe as possible, including those who are vulnerable. In addition to this, employers should be holding individual conversations with those returning from shielding to support this transition. This might include
This is a challenging time for everyone. Employers are also navigating new guidance and working through how to support people. Discussion is the key to making this work and finding a way forward. Ultimately, safety is the most important part and, in line with government guidance at the time, employers need to ensure all measures are put in place. If you feel this isn’t the case and you are being put at unnecessary or unreasonable risk you can refuse to work, however, where possible, it is better to discuss this and try to resolve it.
Summer is usually the busiest and most exciting time of year for our fundraising team at MS-UK. We’d be heading to the biggest charity sporting events in London to cheer our wonderful fundraisers on with plenty of encouragement and love. Unfortunately as for all of us, this summer is very different. Sadly all of our fundraising events have been cancelled because of the COVID-19 pandemic and we have lots most of our fundraising income.
One of our favourite events is RideLondon which is the world’s biggest 100-mile cycling event between London and Surrey every August. We’re usually stood proudly along the route near the finishing line at The Mall with a crew of brilliant volunteers waiting eagerly for our riders and making plenty of noise when we spot our fundraisers, affectionately known as our TeamPurple family.
Sadly the event has been cancelled this year but the organisers have arranged a really exciting virtual event in its place, which is happening over the weekend of 15 and 16 August and anyone and everyone can take part!. You can join in in own way, with your own set of wheels. With distances from 1km to 100 miles, you set your own pace on a bike, in a wheelchair, on a scooter, skateboard or even a unicycle!
So here’s your opportunity to get active this summer, have some “wheely” good fun with your friends and family and be part of something special to help MS-UK support more people living with multiple sclerosis (MS).
All you need to do is pick your distance and wheels and head to https://myridelondon.co.uk/ and sign up today. All fundraisers will receive an exclusive medal from MS-UK.
We are predicting a loss in income of £360,000 as a direct result of the pandemic but we are determined to come through the other side as a robust charity. We’re hoping to be able to support more people living with MS by adapting our services e.g. hosting national exercise classes and social groups via social media and online technology. We need your help to achieve this and together we can make such a positive difference for the MS community now and in the future.
I really hope you are keen to take part. Please do contact me (firstname.lastname@example.org) for more details.
We can’t wait for you to join our TeamPurple family in the biggest event on wheels this summer.
These are challenging times for charities, as Fundraising Manager Jill Purcell explains
When COVID-19 hit, we saw much of our income dry up literally overnight due to major fundraising events being cancelled all across the country. It was time to act quickly and think outside the box to find new ways for our supporters to continue fundraising for us and help us continue to provide our vital services for anyone affected by multiple sclerosis (MS).
With a bucket full of determination and a huge dose of passion, we launched our urgent appeal to raise general funds and our first-ever virtual event, My MS Marathon, to raise money for our telephone counselling service.
I am really pleased to say that we have had an excellent response to both campaigns. At the time of writing, we have received over £10,000 in donations. Thank you to everyone who has kindly made their generous contributions. It just goes to show how much people can pull together and care about our MS community. The appeal is still running, so if you would like to make a donation we’d be hugely grateful for your support.
My MS Marathon
My MS Marathon is going so well that we’ve decided to extend the event until the end of August, so there is still time to take part! We’ve seen lots of interesting challenges being taken on, from walking and running to gaming. People love My MS Marathon because it is really accessible. It’s your challenge, your way and you can take part at your own pace. It just needs to be focused around the number 26 – the number of miles in a marathon. Everyone that raises over £100 receives an exclusive My MS Marathon medal, too.
Catherine Wakefield, who lives with secondary progressive MS, was inspired to take part in My MS Marathon after a friend told her about it on Facebook. Catherine calculated that if she did a lap a day around her village green every day for a month using her “purple wheels of steel”, she could smash the marathon distance and so her challenge was born. Catherine said, “If Captain Sir Tom could do it at 100, surely I could manage a few laps around the village green!”
If you would like to take part in My Ms Marathon, all you need to do is dream up your challenge based around the number 26, pledge to raise £100 and sign up at https://www.ms-uk.org/my-ms-marathon. Thank you in advance for your support.
Whilst the appeal and My MS Marathon are working well, the road ahead is still very rocky. We are constantly working on new ideas to bring in much-needed funds so we can continue to help anyone affected by MS.
Could you volunteer to place collection pots in your local area for us?
Here at MS-UK, we have an amazing group of volunteers who we call our MS-UK Community Champions, and we are looking for more people to help.
It doesn’t matter where you are in the country, if you think you can help us to raise vital funds by placing collection pots in your local area, then please do get in touch with our Community Fundraiser Lucy today on 01206 226500 or email Lucy@MS-UK.org
Thank you again for all your support and stay safe and well,
Jill Purcell, Fundraising Manager
Mary Wilson explains how the pandemic derailed her chance to compete for her country
Mary was an army mental health nurse and completed four foreign tours before being discharged due to multiple sclerosis (MS). Then, aged 53, she began competing as a para badminton player, with her sights set on the Tokyo 2020 Paralympics. Since the games were postponed for a year due to Covid-19, she talks us through her training schedule and how the postponement has derailed her plans.
My plan for this year was to enter all Paralympic badminton qualification internationals to give me the chance of gaining as many selection ranking points as possible. The ground work to be able to do this was a cardio vascular and strength and conditioning gym session six out of seven days, plus being coached and playing games with my sparring partner.
It has taken many years to understand the boundaries that I have physically, initially being diagnosed with relapsing remitting MS and then being re-diagnosed with secondary progressive MS as my condition deteriorated. The condition is such a fluid and eclectic mix of different symptoms, such as lack of coordination, fatigue, pain, problems with sight, weakness in muscles, and memory loss. Trying to keep my training on an even keel depends on how I feel each day. Within 10 minutes of waking I will know what kind of day it will be for me and I take it from there. Balancing training with health is pretty much common sense. I eat well when I can, rest for a couple of hours in the afternoon if needed and try and get at least eight hours’ sleep per night.
However, I do find it difficult to eat breakfast, so often I would either go without or have to force myself to have cereal. Sometimes I would be too tired after training to cook and I would eat easy junk food or nothing at all.
On an average week, I’d train six days out of seven, with coaching, working out in the gym and sparring with my partner.
The decision to postpone
Since the postponement of the Olympics, my training regime has been blown apart due to the lack of sports facilities and being unable to associate with other players and my coach. I do believe it was the correct decision for the government to make, but that it should have been made much sooner.
Keeping self-discipline, a positive attitude and motivation is proving to be an extreme challenge. In the big scheme of things, I need to keep reminding myself that people are dying all over the world and that sport and ‘my world’ must come second to what is going on just now...
Read the rest of Mary's story in the current issue of New Pathways magazine, which is FREE to download this month! Download free copy
Rebecca Bailey was diagnosed with MS during lockdown, and a ‘desperate impulse’ has resulted in her helping others just like herself with overwhelming support, she is our July Fundraiser of the Month
Here’s the thing you should know about me, I’m not a good runner and a strange phenomenon happens where I turn into a sweaty beetroot. Ask anybody. I used to run a bit here and there, nothing fancy. But now, despite the beetroot face, I’m going to keep running until I physically can’t anymore. I was diagnosed with multiple sclerosis (MS) during the pandemic. That was a bit of a surprise for me, in a year full of surprises. And yet, this July, I’m running a (very slow) marathon over the course of the month. All 42km, bit by painstaking bit. Surprised? I know I am!
So what spurred on my July dash? I have to be honest, it was a desperate impulse. My symptoms are mostly tingly feet, but it’s pretty off-putting when I’m running not to feel the ground beneath me. Will I trip and swerve right off the path? Probably not, fingers crossed! For a while, I just wanted to hide and wait until the tingling went away. I couldn’t envision going out on the track like this. I saw the ideal version of myself I had in my head swerve off the path and fall out of sight. My confidence was broken. I stopped running.
Then I saw the MS-UK’s My MS Marathon campaign and madly thought “Yeah, alright then”. I had been trying to be vocal about my new health condition but I never anticipated what happened next. I linked up my fundraising page with friends and family and promptly forgot about it. I put my trainers on and managed to stay on the path for the duration of my run.
I have email alerts on my phone, and as I pounded my way over tarmac and dirt track, I was accompanied by the ringing sound of emails flying into my inbox. At 2km I stopped for a breather and checked out what was causing the racket. A man was running past me at the exact moment that I whooped for joy, and I think I caused him to leap out of his skin. I couldn’t believe it, I’d smashed my £100 target within a couple of hours.
Turns out, I hadn’t really told that many people about my diagnosis. My bad. They learned about it through my fundraiser, and all I can surmise is that they wanted to give me a hand. I just didn’t realise how many hands there were, reaching to give me a boost, a pat on the back, a high five. Old family friends, co-workers, lost friends, and against the backdrop of well-wishers, always my family. I haven’t seen my mum or dad, haven’t hugged them in four months. Not since before my diagnosis. But my family led the way with my fundraiser, reaching across the distance to keep me going. I was crying by 3km because my next target had whooshed by like the kilometres. By 4km, I didn’t know what to do with myself but laugh. To myself. In the middle of the street. As it rained. It was that kind of a day.
I started out doing small runs - 1.5km, maybe 2.5km if I was feeling brave. Before long, I fell back into the rhythm of my run. My muscles remembered what they were doing, I recognised the twinge of a stitch but pushed through it. I inched back up to 5km, and it had been over a year since I had the energy or the confidence to push that far. And now, when I feel like walking, I remember my backers’ messages and I keep running.
I know that for many other people with MS, having MS-UK there will keep them going. It’s so important to help support people going through this frightening time. I know because I’m going through it too, and I need all the help I can get.
I hit £1,000 last week and I don’t think I’ve stopped smiling (or running) since. I’m still on the right path, for now. If you've been inspired by Rebecca's story or would like to donate, visit my-ms-marathon.everydayhero.com/uk/running-for-my-life
I hope you are all keeping safe and well. I'm writing to you today to update you on the progress of our urgent appeal. Thank you to everyone who has already contributed, your donations will help ensure we can continue to support people affected by multiple sclerosis (MS). MS-UK saw a 44% increase in calls to our helpline in the first month of lockdown alone, with the MS community searching for essential information and emotional support. We have also seen a surge in demand for our counselling service, so it is clear to us that our community needs us, but like many other charities, we are facing very uncertain times. With fundraising events cancelled we estimate a loss of £300,000 as a direct result of COVID-19 in 2020 alone.
Our recently published Loneliness and Isolation report revealed that before COVID-19, 71% of people living with or affected by MS in the UK experience loneliness and isolation, or have done in the past. We knew all too well just how damaging this pandemic could be to our community, so we quickly found ways to adapt our services to maintain the essential support our clients need from us on very little or no income to ensure no one has to face MS alone. Our clients have seen the value and truly appreciate these new ways of receiving support, like our online accessible exercise classes and coffee mornings, but we need your donations to ensure we can continue to be here for those who need us most now and in the future.
Living with MS can be isolating enough without having to deal with the complications a pandemic brings and as the country begins to emerge from lockdown, for people living with MS life could become even more complexed. They will have many more questions, such as is it safe to return to work, can I socialise with my family, should I take my MS drugs, and our helpline team will seek out the best information and resources available so they can make informed decisions about how they too can return to ‘normal’ life.
The pandemic is not over and there are more uncertain times ahead, but together, with your help, we can ensure people living with MS emerge from lockdown safely and with the right support. It costs £2,520 to run the national MS-UK Helpline for just one week and a single counselling session for someone struggling with their mental health costs £50, so any donation you can make, big or small, will help us sustain our all-important services. To make a donation visit www.justgiving.com/campaign/MS-UKAppeal, text URGENT5, URGENT10 or URGENT20 to 70456 to donate £5, £10 or £20, or you can send a cheque to FREEPOST MS-UK.
MSer Nicky Hartigan reveals why she decided to take on her own My MS Marathon
When I heard about the MS-UK marathon challenge I jumped at the chance and signed up to run a mile a day for 26 days. For a lot of people running a mile is pretty easy, but that is not the case for me. I’ve never been a natural runner, I don’t like running (in fact I used to hate running) and I never thought I’d be the kind of person to get a run in between the school drop off and starting work. But then I also never thought I’d stop loving Morrissey or get multiple sclerosis (MS) - turns out life really is full of surprises!
When I was diagnosed with MS last year at the age of 39 I didn’t entertain the idea that it would change my life but I knew instinctively it was a call to action - to live better and without fear. I laugh now looking back because I spent the previous year genuinely fretting about the looming ‘big 40’, completely oblivious to what was to come. I suppose in a lot of ways MS has freed me - I no longer care that I’m a slow runner, that I’m 40, what I look like in running leggings or that I’m being lapped in the park by an old lady who is stopping to pick up her dog’s poo along the way (true story!). Now I run because I can because it makes me fitter and reminds me to look after MS. I don’t see MS as my enemy, I’m not a warrior, I’m not fighting it - I’m making space for it. We are sharing our life in this body and we’re going to do our best together to make it a good one.
Of course, like everyone I have my moments when I wonder what the future will bring, how my children will be affected and if the MS will get worse. Luckily, I have the privilege of being a clinical psychologist for 16 years and have learnt from the best (every one of my clients) on how to face life’s challenges with courage, wisdom and composure. It is my professional background that drew my attention to MS-UK when I saw their fundraising campaign to fund an online counselling service for those affected by MS. From my personal experience with MS and professional experience as a therapist, I know that emotional support through counselling and therapy can be truly life-changing and in some cases lifesaving. Unfortunately, MS healthcare services have a long way to go in making this available to everyone who needs it when they need it and MS-UK is doing wonderful work addressing this problem. MS-UK is an incredible charity powered by inspirational individuals and I am proudto be fundraising for them.
On Tuesday 14 July MS-UK will be launching our national exercise classes on Facebook Live specifically designed for those with multiple sclerosis (MS). Each week we will be hosting two live classes via Facebook. This will include an upper-body class on Tuesdays and lower-body class on Fridays both at 1pm.
The classes are designed to be accessible and inclusive for all. Both classes will be broken down and an alternative exercise demonstrated to ensure participation for all clients regardless of the individual’s ability.
The sessions will last approximately 30 minutes and will be delivered by MS-UK’s Wellness Coaches. Our Wellness Coaches are Level 4 exercise specialists who have over 13 years’ experience working with our clients in MS-UK’s wellness centre. The session will focus on correctional exercises, co-ordination, balance, mobility and strengthening exercises. The exercises performed during the class will offer the opportunity to take away from the class and be performed independently.
- Main session (neural engagement, co-ordination, strength and stability)
- Cardiovascular (pulse raiser)
Some equipment can be used during the classes that you will find around the home. These include two food cans (or light gym weights (1-2kg max) if you have them), bath towel, walking stick/broom handle and carrier bag.
How to join us on Facebook
If you already have a Facebook profile you just need to search @MultipleSclerosisUK or click this link www.facebook.com/MultipleSclerosisUK/ to visit our Facebook page at 1pm on your chosen day. The live feed will appear on our profile page. If you do not have a Facebook account you can set one up by following these instructions.
MSer and research student Hannah Morris discusses the impact of living under the threat of uncertainty can have, and how to overcome it
The threat of uncertainty can be paralysing. It can pose a huge challenge to us being who we want to be or achieving what we want to, whether it be in terms of our careers and outside relationships, or in the home with our family and friends.
Any type of health condition can produce a threat in the short term, whether financially, socially or otherwise. Longer-term illness comes with a longer-term threat. If there is the hope of a cure to counter our fear, the psychological burden is lessened in the knowledge that there is an end in sight. With a chronic condition such as multiple sclerosis (MS), which I have, the threat is never-ending. The feeling may go up and down, but I find it is always a constant.
The psychological effect of threat results in feelings of anxiety, which is exhibited in a physiological reaction. With short-term threat this is not a problem it serves as a protection, as these physiological changes support whichever ever approach is taken to escape or fight the threat. However, with consistent long-term exposure to threat, anyone’s health can be impacted. For people who have compromised immune systems, like those of us living with MS, this is something that we need to be more aware of as it can have detrimental effects to our MS status, potentially triggering the onset of a new symptom or relapse.
I personally am someone who feels particularly anxious about change of routine which is why I had a really hard time adjusting at the beginning of the COVID-19 crisis. I was always used to the routine of school runs and having that space to myself during the day. Then COVID-19 happened and upset my routine and my anxieties were all over the place as I tried to establish a new routine and be OK with it. I know from experience that this anxiety is not good for my MS so had to find ways to manage myself.
I know only too well that the threat of symptoms arising any time can be psychologically disabling and may potentially be one of the underlying causes of anxiety in MS. According to a recent article in the Journal of Neurological Science, anxiety is disproportionately higher in the MS population compared to the general population, or even other chronic illness population. Despite this, there is a paucity of interventions targeting anxiety in MS. However, there are many ways in which threat and the resulting anxiety can be managed.
How to manage threat and anxiety
Change your perception. Be realistic about the chances of your fears coming to light. Instead of ruminating over the ‘what ifs’, I make a plan in case the worst does come to pass. This will eliminate the need to ruminate further as you are now prepared.
Counter the psychological effect. As mentioned previously, if there is the hope of a cure, this neutralises the psychological experience of threat. We know that there is no cure for MS and some may say it’s unrealistic to live in hope of a cure too which could lead to further distress.
However, there are other ways that people with MS can find hope by focusing on shorter-term goals and/or exploring alternative ways to attain goals. As an optimist, if I have a seemingly unattainable goal, you’ll find me seeking alternative ways to achieve it that are more compatible with my abilities.
For example, I’d long since dreamt of doing a PhD but for a long while also didn’t think it possible due to MS-related obstacles that would potentially make it difficult to maintain attention whilst also remaining alert. As anyone with MS will know, this is something that is not always possible, especially if it is expected to follow a set schedule, when MS never seems to like to adhere to any schedule and instead strikes when it pleases.
After a lot of head-scratching and searching, I finally came across the perfect opportunity to complete my PhD by distance. It has allowed a great amount of flexibility that lets me work with my symptoms rather than fighting against them. If I’m feeling fatigued, I can take a break when I need, or, my most common issue, if I’m experiencing a bit of ‘cogfog’, I can set the article aside and get back to it when my brain is ready to comply and I’m ready to take a deep breath and face it with patience.
Counter the physiological response. The physiological response to threat can easily be reversed through the use of relaxation techniques that aim to reduce levels of arousal by reducing respiration, heart rates and blood pressure. Common techniques include breathing techniques, progressive muscle relaxation, visualisation and mindfully paying attention to one’s surroundings whether it be directly in the body, or the physical surroundings, making use of all the senses.
I’m very fortunate to live in the countryside so this is one of my ‘go-to’ techniques when I can feel my anxieties coming on. I like to go outside and experience my senses whilst walking if possible, but often the weather doesn’t allow for that, so I’m generally quite content to take myself to a window, gaze out and just embrace my senses. I tend to experience sensory overload a lot so I find this approach is helpful for that too. I’ve tried to make this practice a part of my new routine to help keep on top of my anxieties.
It might be that you generally favour one approach over the other or find that certain ones are more appropriate at different times. Either way, a process of trial and error will determine the most effective approach for each individual to reduce the level of threat and resultant anxiety.
As part of my PhD research, I am hoping to support others with MS and invite you to join me in this endeavour by having your say in what would help you.
If you are happy to help out then you can complete this online survey here by clicking the ‘start’ button at the bottom of the page. https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/
Or you can go directly to the survey here https://forms.gle/5YTssp4pDVFciYEe9
Gary Williams on his journey from diagnosis in the 1980s to the present day
I was 28 when I was diagnosed with multiple sclerosis (MS). That was in 1985, in the decade that fashion forgot, but one that sticks forever in my mind.
My symptoms started a year earlier. I was having a shave one morning and noticed that the pupil in my right eye was huge, whereas the one in my left was tiny. Unusual for a Tuesday, I thought, and when I blinked and looked again, the pupils had changed and the left was huge.
At first, I was just mildly amused but, as time went on, I began to question whether or not something was going on. I started having spasms and my body would cramp up quite painfully. To cut a short story long, I had all the usual tests, a lumbar puncture, and it transpired I had MS. My doctor gave me the news in the best way for me. He asked what I thought it was and what I would prefer it to be. I told him I was worried about it being a tumour as I had many brain scans, and also that it may be MS. He asked which I would prefer of those options and I answered, “MS, as removal of a tumour may alter my personality.” (Something which may have been welcomed by many!). He answered, “Well, congratulations, you have won your first choice”. Perfect way to tell me.
The first six weeks after my diagnosis were strange. It seemed to affect others far more than it did me. I spent most of that time comforting people, putting my arms around their shoulders and telling them everything was going to be fine. I suppose we were all stumbling around in the dark, as no one knew what we were dealing with. No one thinks about these things until they affect you or someone close to you personally.
Read the full story of Gary's MS journey in the latest issue of New Pathways which is FREE to download! Download free copy
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