Deborah Searson was diagnosed with multiple sclerosis during lockdown… She is sharing her story to help others who may find themselves in a similar situation
This is my story of how I became diagnosed with multiple sclerosis (MS) after the shock and realisation had set in, I realised life doesn’t stop and for me, the way through was to put into writing my experience with a little added humour.
I woke for work at 6am on a Spring Saturday morning in late April 2020, I stood and stumbled slightly, probably due to the few red wines I’d had the night before (or so I thought) I went back into the bedroom and stood in front of the mirror to put on a little makeup. As I stood there, I was trying to focus my eyes on my face and just couldn’t get a clear picture. How many wines did I have last night? My job involves me at times being in a senior role and that day was one of those, Great! I had no choice but to go in, with the Coronavirus very much part of my job, I had to go and make sure everything and everyone was OK. I only managed to stay an hour or so.
Once home I slept hoping when I woke up it would have resolved itself but it hadn’t. Whilst this was happening, we were in a full lockdown due to Coronavirus, I rang the eye clinic at a local hospital and asked if they could see me. What I’d noticed is that it seemed to be double vision I was having, where images were on top of one another not side by side and that it did return to normal if I closed one eye? They were unable to see me due to pressures at the hospital so I left it a few more days hoping that it would resolve by itself.
I eventually managed to get an eye examination at an Opticians but this was done at a social distance and they told me they thought that I may have Strabismus now to anyone that is not an optician, meant I had cross-eyes! What? How? Why have I never noticed this? They said I would need to wear a Prism on my glasses which would help restore normal vision, but they couldn’t give me one due to the pandemic.
A few more days passed and the double vision was starting to make me feel like a drunken sailor ready to walk the plank, I remember texting one of my friends who also works at the same place as me and they somehow managed to get me an eye clinic appointment (lifesaver literally).
So eventually, looking like an extra from Pirates of the Caribbean, with my eye patch on, secretly enjoying the daily fancy dress, I got an eye clinic appointment and, on the photos/scans they’d taken of my eyes, they said there seemed to be high pressure on the optic nerves and I would need a lumbar puncture. After which I was diagnosed with Idiopathic Intracranial Hypertension.
Over the following month, I began to feel worse by the day and in late May 2020, I was in and out of the hospital, sent home each time with what they thought was Gastroenteritis.
It wasn’t until I went for a follow-up eye clinic appointment in June 2020 the consultant brought up the latest MRI scan results showing I had extensive inflammation on the brain. I was kept in hospital and given steroids, it was here that the words multiple sclerosis were first spoken to me. In all honesty, I’ve worked in the medical profession for the last 15 years and I didn’t really know much about MS. The MS Society website helped me get to grips with it and reading other blogs made me feel less alone.
I have launched a blog and if anyone would like to read further about my journey with some humour added in you can visit, Youregettingonmylastnerve.co.uk
MSer and HR expert Rebecca Armstrong explains the ins and outs of medical retirement
A regular point of discussion on the MS & Work Facebook group is around medical retirement. Many people with multiple sclerosis (MS) reach a point where if feels impossible to carry on at work due to their condition and this can lead to a crossroads.
If you find yourself at the point where you feel you can no longer continue at work, retirement might be the next step. The first and most important question to ask yourself is whether it is your current job that has become too much (even with adjustments) or if any kind of work is too much. This is important as medical retirement is a big step and one which symbolises that you will not work again (although some pensions may allow a restricted number of hours). If you feel that it is your current job that is too much you might want to consider looking for another job which is better suited before making the step into retirement.
If, however, even with adjustments, you are unable to work, then retirement is a way to access your pension early.
If you feel this is the next step for you, there are a number of things to look at
Once you have completed these steps and have a clear picture of how the retirement would work for you, the next step is to discuss it with your employer. Once you raise it, you are letting them know you are unlikely to be able to continue work, which is why I always recommend this as the last stage in the process when you are sure. Medical retirement is ultimately a dismissal but it is managed as more of a mutual agreement. It is a big step and alongside this process it is worth considering counselling and other support from the MS-UK helpline.
This was origionally published in New Pathways magazine. Subscribe to New Pathways
In October this year, I decided to run a virtual marathon, my first one. I began training, building up and getting the miles in my legs, tentatively at first to avoid injury but building up the distances as I went. It was very hard but didn’t take long and like my dad, I (quietly) don’t give up.
My motivation… my dad. An athlete, a footballer, champion snooker and darts player, canoeist and lifelong fisherman. He received his multiple sclerosis (MS) diagnosis when he was 27 years old, not long after I was born. He is now 66 and although the progression of the disease has been relatively gradual, it has taken away all those things. He has lost the vast majority of the mobility control in his legs amongst other things. Having lived with MS for 40 years I cannot believe how resilient and calm he is and yet open. We all keep a little back from our loved ones and I do not doubt that he does because this is his and he owns it. He shares what he wants and faces into what he doesn’t. He doesn’t complain, he doesn’t moan and he doesn't give up.
I originally intended to run the Official 2020 Virtual TCS New York City Marathon solo and self-supported, however, an ambitious practice run turned into the full distance a week ahead of schedule! I was out on the trails and things were working out well so decided to push on to make sure I understood what the ‘real thing’ would be like… good job too as I learnt a lot about what my body needs when under this much pressure. I thought of my dad.
On the day, after designing my route and packing my vest with food and water, I decided to set off from my dad’s home and take a nostalgic run through the old days along roads, towns and villages I remember when growing up. The weather was shocking with heavy rain and being soft underfoot - so Garmin ‘Set', crime audiobook ‘On’ (Dad loves detective stories), head down, swing the arms and see where the legs take you!
20 miles in and to be honest I’d had enough of natural beauty, enough of my audiobook, my body was rejecting food and all the water in the world was not hydrating me. There was no reason I could be, but I was bored! So I called my wife and spoke to my kids who buoyed me up. Then called my dad who picked up just as the wind and rain returned and couldn’t hear a damn word I was saying! They say the last six miles are the worst. That said, I completed it, solo and self-supported while playing detective in the pouring rain.
My reward (medal) is still in the mail from US however the New York Road Runners app provided this augmented reality one which really lifts the spirits when you award it yourself while you pose for as good a selfie as you can get (or care about getting!). My other reward was a cold, then hot bath, a can of American Cream Soda, nine sausages with huge amounts of Dad's mash.
I was reading about MS-UK and what caught my eye, in particular, was their focus on the mental health of individuals with a multiple sclerosis diagnosis. My dad, my brothers and I are all fortunate to have one another to provide all kinds of support, particularly through lockdown, but we all know there will be some serious and important decisions to make in the next few years. We will need to strike a balance between support and independence. There will also be times when we do not know what to do, or if it is the ‘right’ thing and we will need the support of MS-UK.
As for fundraising, I told my story to those at work, those I run with or who I know run. With so many charities, particularly in 2020, needing more support than ever I didn’t want to appear to pressure them but when explaining the reason for my choice and the impact the support of MS-UK will one day have, people gave what they could.
Simon has raised an incredible £737.53 for MS-UK, here is the link to his fundraising page https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=SimonGardner11&pageUrl=1
If you would like to take on your own challenge to raise money for MS-UK like Simon did, please contact Lucy today on 01206 226500 or firstname.lastname@example.org
Amy Thompson explains why she created MS Together, and how you can get involved
MS Together is a support group for young people aged 18-35 who have been diagnosed with multiple sclerosis (MS) and live in the UK/Ireland.
The group was founded last year by me, Amy Thompson, after I was diagnosed with MS at the age of 21. I struggled to find anyone who I could really relate to and I couldn’t find any support groups that existed just for young people. Over the last year, the group has grown from just six members to over 330 and I have huge, exciting plans for the future of MS Together.
We offer a private Facebook group for members to connect, an optional WhatsApp group chat for more frequent support, virtual meet ups (three to four per month), and in-person meet ups (when possible). So far, we have had three in-person meet ups and we have hosted a number of virtual events including a bottomless brunch, motivational and research talks, a murder mystery, a mind-set evening, bingo and quiz nights.
On 20 December 2020, MS Together are throwing a virtual Christmas Party for all members to enjoy. As part of this, we have organised a Christmas Raffle and we’ve been donated some incredible prizes, including several vouchers, personalised gifts, chocolates and snacks, wellbeing sessions, crates of beer, hampers and bundles, perfume, jewellery, art, home decor, and a top mystery prize!
All profits raised from the raffle will be donated to MS-UK who have helped many of our members this year through their counselling service. We are very grateful for the work they do, and we are delighted to be fundraising for them. We have already raised over £500 and we still have almost three weeks to go.
Raising money for charities like MS-UK is so important, especially during these challenging times. There are so many ways you can fundraise nowadays, and the team at MS-UK will support you all the way.
If anyone would like to find out more about MS Together or our Christmas Raffle you can email email@example.com. You can also follow us on Instagram @mstogetherofficial or request to join our private Facebook group here www.facebook.com/groups/mstogetherofficial.
We basically offer a safe and supportive space for all members whilst also making it fun, positive, and uplifting. We would love to be able to share more information about the group and we will welcome any new members with open arms!
If you would like to speak to the team at MS-UK about your own fundraising idea, then please contact Lucy on 01206 226500 or email Lucy@ms-uk.org
The theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.
The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware. Kinder. And understanding.
Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.
People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus. In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.
It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.
To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable? It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.
Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour.
I am Martin Baum. I am a proud MSer.
Head on over to the MS-UK Facebook page and like and share our posts for the International Day of People with Disabilities. Help us raise awareness of the hidden symptoms of MS - www.facebook.com/MultipleSclerosisUK/
For International Men’s Day, Martin Baum reflects on what it means to be a man with MS
19 November is International Men’s Day and as an MSer that gives me pause for thought. As someone living with multiple sclerosis (MS), do my struggles make me different to any other man commemorating this day?
After chronicling the difficulties in a series of blogs about my long and sometimes abusive relationship with MS, having to endure symptoms hardly qualifies me as unique.
Over the years my wife Lizzy, as my carer, has become my gatekeeper, my rock and protector. Yet as much as she protects, she is also a reminder of the losing battle I have for my independence and that is the trade-off.
While my struggle against MS incarceration is no Spartacus or Braveheart moment, what it represents is me desperately wanting to defend my body against the MS bailiffs. Those dispossessors of independence have already been and taken my freedom away to drive on my own without Nurse Ratched – sorry, Lizzy – riding shotgun.
I am not in a wheelchair, and don’t plan to be any time soon. But as my legs continue to be less than supportive, the more my knees continue to buckle under the weight of my torso. This is a reminder that the wheels of my growing immobility are now in motion.
Mentally, I still see myself as a ‘player’ but physically, “it just ain’t going to happen”, as my dad used to say. While I am only 60, the days of leaping in and out of a car à la Starsky and Hutch (for those that remember them) are long gone, having given way instead to snaking myself in and out of the passenger seat. It was much the same with walking aids.
It took so long to mentally ‘get over it’, to feel at one with my cabbage stalk stick. Although there’s nothing unique in using one, and no matter how much I resented being bonded to it from the very start of our affiliation to each other, in truth, all this time on, I feel no less a hostage than I did at the beginning.
Yet despite all the trials and tribulations of having MS, of living and dealing with the many symptoms of it, one thing is for sure – it does not actually make me unique. What it does is make me think of is every man who cannot be here on the 19 November to celebrate International Men’s Day.
Despite the daily struggles of having MS, the fact I am still here to write the blog, to tell the tale of just how restrictive life is, which this year, because of Covid-19, has been the same for all of us, there is only one word that comes to mind and that is ‘blessed’. Because I am thankful to still be here today when so many are not.
When I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.
Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.
Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.
Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.
I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.
Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.
This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas.
MSer and career coach Carla King on the ups and downs of parenting with MS
I’ve wanted to be a mother for as long as I can remember. In my role, I am simultaneously elated and exhausted but the reward far, far exceeds anything that might feel testing. TV and film often send up parenthood with comic effect. We laugh along because it’s funny, but the truth is that mixing multiple sclerosis (MS) with parenting can be more guilt-tripping, than comedic.
For years, I would push myself to get through the school run, particularly as this was toward the end of the day by which time my energy reserves were depleting. This meant I could just about muster collecting my son and the bus ride home, but not to go into lengthy discussion with other parents. Why push myself? Because I thought motherhood was all about sacrifice and how I was supposed to behave, even with MS.
Adapting to parenting with MS
Even before lockdown, I had scaled back playdates due to energy levels required to ‘entertain.’ By this I mean just coping with the noise, keeping one eye on preparing for a feeding frenzy and the other on anyone intent on killing each other. Yet children have an extraordinary way of turning anything into play, so now there are many more Zoom, WhatsApp and phone calls.
I am heat-sensitive, which makes me unwell. In the height of the summer, I avoid the park after school. If we don’t end up in our garden, you’ll find us making ice cream smoothies.
Routine isn’t just for children, some of us with cog fog need it too. If I have some semblance of routine, I can remember tasks more easily, for example, putting out school uniform on a Sunday night, or PE kit ready for Tuesday.
In mid-October, I experienced a level of fatigue that knocked me for six. I don’t know why. A couple of weeks later, having decided to forgo trick or treating, I hatched an alternative plan for Halloween. I baked for days and put on a surprise ‘party.’ I really thought this would come at a price, but it didn’t. Literally, zero fatigue. Sometimes, we can track trigger points but, as in the former example, MS sometimes can be a conundrum to get through and not question.
The important take-away? My son had his Halloween (and some fatigue you can’t predict).
Learnings so far
I remember doing everything I could to make sure that my child didn’t feel I was different to other mums. This came at a cost and a realisation – I am not like other mums. A couple of years ago, I decided to stop comparing myself to anyone else. The only person I need to worry about is the only person in the world who calls me ‘Mummy.’ In all honesty, we would both rather I be authentic.
Avoiding MS parenting guilt
Ok, so my bakes aren’t always perfectly decorated, I’ll not run marathons or paraglide, and I’ll always have to work harder than a parent without a chronic condition. But I’ll always try my best and I’ll always be me. My child doesn’t need me to be everything all of the time. When the chips are down, Mummy is enough.
Carla works as a Career Coach and was diagnosed with MS in 2008. Carla often supports MSers through diagnosis and beyond. She also presents to audiences from the MS community and the MS field. Carla is the author of a blog about living, working and parenting with MS, called My MS Bully and Me.
MSer Sarah Cross discusses how she deals with the ongoing potential for relapses with her condition and the possibility of progression
As a relapsing remitting MSer, one of my biggest difficulties is recognising a relapse. My first one many years ago was recognised by my consultant at my annual check-up appointment – he spotted foot drop when I walked into his consulting room.
After checking me over, he diagnosed a relapse which he thought had actually happened a few months previously but which was still affecting me. He prescribed a short spell of steroids to try and control it. I remember saying to him that I had wondered why my foot wasn’t doing what it should!
Since then, coping with the ups and downs of multiple sclerosis (MS) is a big challenge and, on a bad day, or if I’ve had a few bad days, one of the dark questions at the back of my mind is of course ‘is it a relapse?’ I’ve read somewhere that for it to be officially a relapse
• Old symptoms must be worse or new symptoms appear
• Symptoms must last for at least 24 hours
• They must occur at least 30 days after the last relapse
• There must be no other explanation for the symptoms
That all sounds very straight forward, but life and one’s day-to-day wellness just aren’t so clear cut. The obvious question all the time is ‘am I just off colour/a bit down/fatigued after a busy spell or is it a relapse?’ especially if you’re not feeling too good and you’re missing out on family gatherings/events to stay in bed and the negative gremlins start to goad you!
Confusion and fear
I find the advice of ‘listening to your body’ is much harder to follow than it sounds. The body and brain are so very complex and influenced by so many fears, knowledge, lack of knowledge, trying to appear well in front of friends and family, not wanting to make a fuss, not wanting to bother busy people such as GP, consultant, nurse over something that might be nothing. I end up more confused and fearful if anything. MS symptoms are known to be hugely variable and relapses could be anything. What’s my body really telling me? Is it my fears goading me again? Is it just the aches and pains of age? It’s very difficult to get a sensible answer and the unbiased truth from your body if truth be told!
And I know that getting treatment promptly for a relapse is important in order to reduce the amount of damage my rampaging immune system can do to my nervous system.
I’m currently having severe back pain which started about 18 months ago. Whilst I’ve had back pain problems on and off throughout my adult life (don’t we all!), and from a herniated disc 20 years ago, this pain has been severe but different from my ‘usual’ back pain. Again, the questions of ‘Maybe it’s a relapse because my balance, spasticity, leg weakness and drop foot are worse despite my exercising to improve those things?’ or ‘Is it just my old injury resurfacing but worse because I’m so much older?’ and ‘Is it simply triggering relapse symptoms?’ come up. I’ve recently finally contacted my GP and consultant because the severity is now stopping me sleeping and because I’m becoming reliant on anti-inflammatory and strong pain-killing drugs. My consultant has suggested an MRI scan to try and see what’s going on. He did suggest this about a year ago because I haven’t had a scan since I was first diagnosed some 15 years ago in order to see how my MS was progressing.
I think my reluctance then was the fear of knowing too much about my MS, even though it could help me with my back problem which is probably nothing to do with my MS. But that word ‘progressing’ does strike fear into me!
Secondary progressive MS
I’ve only recently become aware of the possible transition to secondary progressive MS. ‘What’s that?’ ‘Do I want to know?’ ‘Do RRMSers always progress towards secondary progressive?’ ‘Why do/don’t they?’ ‘Can I prevent it?’ ‘Should I just keep going as I am and just not think about it?’
It’s easy to do that when you feel well but when you’re not feeling well that’s when the fears, confusions, doubts, denials arise.
What I’ve learned since joining Josephs Court is that I need to try and keep myself as fit and healthy as I possibly can. Josephs Court’s staff, with their exercise regimes and classes, wellness training such as mindfulness, reflexology and seated yoga, and social events keeping MSers in contact to share life stories, experiences and everyday life have helped me massively to achieve this.
But I still have problems knowing when I need to ask for medical help, and having the confidence to do this when my gremlins are telling me that I’m simply making a fuss and everyone’s far too busy to deal with my fuss! But I’m confident that keeping in touch with Josephs Court, MS-UK and their clients will continue to help me cope with my MS and to ask for help without wasting time worrying about my fears, and worrying that I’m wasting other people’s time, so that I can live my MS life as positively as possible.
MSer and career coach Carla King discusses disclosure of health issues in the workplace
As a career coach, my job isn’t to know everything about careers. It’s about using skilful questioning to help clients achieve their career goals. Having said this, when it comes to disclosing disability or chronic conditions at work, there are common themes where it helps to have had personal experience.
I personally hate the word ‘disclosure’ – it implies an admission and a big ‘reveal’, like Batman confessing his identity under duress. Just like Batman, I blurted out my story because I felt obliged to. Unlike fiction, we can find disclosure a dilemma, particularly when the majority of symptoms are not visible to others. Tricky, when many of us find ourselves either diagnosed in an existing role, or in recruitment stages for a new job.
Much of how we approach disclosure hinges on who we are and our individual circumstances. If you know the people you’ll disclose to, you may find this easier. If you don’t, you’ll be sharing your multiple sclerosis (MS) with virtual strangers (in all senses of the word). If you know you prefer to be transparent about MS, your decision to disclose is already made. If your disability is obvious, or have ongoing needs relating to your MS, disclosure is less likely to feel like a choice, and being up front about these needs becomes very necessary. If neither of the latter two options apply, then you must think about your level of comfort with risk.
To clarify ‘risk’, there are many ways disclosure might play out. MS is sensitive, personal information and, in itself, doesn’t limit my capability to undertake work tasks. I don’t know how managers will react to my news, how they’ll perceive me, or where the information will go. I’m highlighting this not to put you off but to give balance to the risks that are too often downplayed, and to reassure you that it’s perfectly natural to have these worries.
From experience, I know that disclosure isn’t just one conversation. In reality, the conversation kicks things off, often really, really good things, and if there were issues, mediation can be helpful, as can legal challenge through the Equality Act (replacing the DDA in 2010).
Is there anything we can do to help make disclosure a more positive experience? I often talk to clients about the circles of influence and control. What is within your control? At the very least, what can you influence? What can you do nothing about or impact? The way in which this initial conversation goes is absolutely a place of influence, as long as you plan beforehand. I’d never advise walking into this situation unprepared or to blurt out your diagnosis, as I did. This takes away an MSer’s precious control, and means you’re unlikely to convey what you really want to say.
So, my advice is to put aside a quiet time, and to focus on the following three things
I’ve had disclosure conversations as both an employee and manager, but the majority have gone well and my needs have been met. Don’t be afraid to admit your fears and to talk it through with someone. Discussing disclosure might give you confidence in whatever decision you ultimately make on sharing your MS at work, just don’t blurt it out like Batman.
Carla works as a Career Coach and was diagnosed with MS in 2008. Carla often supports MSers through diagnosis and beyond. She also presents to audiences from the MS community and the MS field. Carla is the author of a blog about living, working and parenting with MS, called My MS Bully and Me.