Alexis Swete looks back on her journey from diagnosis 26 years ago
Looking back, my first symptom was probably optic neuritis, but the one that sticks most in my mind is the seizing up with painful muscle cramps down my right-hand side.
I was 16 when I had optic neuritis and 17, 19 and 21 when I experienced the muscle seizures. I was sent for ECG scans but by the time the appointment came, I no longer had the symptoms.
I then went numb in my fingers, and this spread up my arm. After a visit to the GP, I was diagnosed a trapped nerve, so I went for a second opinion privately.
There I had an MRI scan and although I was 23, my parents were told of my diagnosis first, and they then told me.
Shock and confusion
I was initially in shock and actually confused multiple sclerosis (MS) with Parkinson’s disease. My whole body had gone numb by this stage. I think I pushed the diagnosis to the back of my mind. There was little information back then. The neurologist who diagnosed me said there were no treatments, advised against joining the MS Society, and said it was a progressive and incurable condition and I should get lots of rest!
After what was probably a few months my sensation came back and I no longer felt like the Michelin man. Initially, I would have relapses about twice a year, but would always go into remission fairly unscathed. It wasn’t until about seven years into my diagnosis that I had a bad relapse and did not fully recover my mobility. I started Rebif which I took for the following 10 years.
Diet and therapies
I have changed my diet to a gluten-free one which works for me. I have tried excluding many foods and still do try and eliminate, as much as possible, diary and legumes. I have recently cut out eggs as I discovered that my vertigo symptom disappeared when I stopped consuming them. Food definitely affects my symptoms.
I also try and stretch as much as possible (but not often enough!) and this really does help.
I have tried pretty much every complementary therapy there is but I have found that massage and acupuncture work for me. Gentle yoga also works. I know that everyone is different and I do think that MS symptoms need to be managed differently person to person.
I also have had some cognitive behavioural therapy (CBT) over the years which helped. Having someone to talk to who is not judgmental, and who isn’t family, I found to be very helpful.
I have been lucky that I had a wonderful career as a primary school teacher. I stopped working five years ago and now tutor online. Life with MS means figuring out ways that one can do things.
Life now is so different from when I was younger and very physically active. I listen to my body and do allow more time to rest. I have become more open and understanding of others.
As an enthusiastic skier, and before I was no longer able to ski, I tried disabled skiing. I found it just wasn’t the same and I didn’t take it up, but the experience helped me to discover other things.
I got myself a mobility scooter and like to travel a lot (the added bonus of not having to wait in passport control!). I have taken up painting and have even held three exhibitions at which I’ve sold my work.
One of my best discoveries was sailing with Oceans of Hope two and a half years ago. They are a charity where only people who have MS can be members of the crew. It was on one of these trips in October 2019 that I met an incredible man, a member of the crew, and we are now boyfriend and girlfriend.
I also adopted a dog who keeps me company and gets me out of the house to walk her.
Don’t hold on to what you used to be able to do, but appreciate what you can do now. Don’t focus on the future, as no one can predict what will happen. Keep your body healthy by thinking about what you put into it. Do join an MS group, as speaking to others with the same condition, who understand what you are going through without explanation, is invaluable
I’ve been diagnosed for nearly 26 years. I have learnt so much from having this condition. I am in a good place at the moment but you never know what is around the corner so grab life when you can!
Monday 10 August 2020 will forever be a memorable day for me, as that was the day I set off on a 1,000-mile bike ride from Yorkshire to Vienna, on my own.
You might be wondering, quite rightly, “Why on earth would you want to do that?” And when I reflect on my achievement, I do sometimes wonder what possessed me to pack up my bike and set off on a solo journey across a continent, which took me from the UK over to the Netherlands, through Germany and into Austria.
The 18-day trip saw me cycle, on average, 70 miles a day through some of the most amazing scenery, tracking alongside the Rivers Rhine and Danube.
I undertook this challenge and adventure for a number of reasons. Firstly, I actually had another cycling trip planned and booked for the summer, however because of the Coronavirus pandemic that had to be cancelled. Instead of just accepting that, sitting back, and doing nothing, as soon as the European borders started to open and the situation had calmed down slightly, I set about planning this trip.
Ever since October 2019, I had wanted to visit Vienna, as it was in that city that Eliud Kipchoge, arguably the greatest marathon runner of all time, completed a sub-two-hour marathon. As a marathon runner myself, I can really relate to just how ridiculously quick that is and how incredible that achievement was. I remember watching him sprinting to the finish line and shedding a tear as Kipchoge achieved a sports milestone given almost mythical status in the running world, breaking through a temporal barrier that many would have deemed untouchable only a few years ago.
Instead of flying to Vienna, I decided my own challenge would be to cycle to the very spot that Kipchoge completed his incredible achievement.
Along the way, I kept a daily blog, mostly to keep my parents informed as to where I was and what had happened that day. The blog, however, picked up some momentum, and soon it was clear that it was more than just Mum and Dad who were reading and enjoying it.
I received an overwhelming amount of support, kind and motivating words from so many people that I knew this journey and adventure wasn’t just for me. I knew I could achieve so much more by harnessing the power of this small community I had inadvertently created. On my penultimate day of riding, I set up my JustGiving page for MS-UK and within a few days raised £1,000. That total now sits at around £1,700, which I am so proud of.
MS-UK is a charity that is very close to my heart. I first got involved with the charity in 2014 when I ran The London Marathon. A very special lady, Mrs B, who has sadly passed away now, lived with multiple sclerosis so I know how devastating the illness can be. She has a very special place in my heart and she doesn’t know it, but I was riding my bike for all those people, like her, who are not able to.
Here is the link to my website which has my full, day by day blog of the trip. I hope you enjoy reading it – please leave a comment if you do! https://yorkshireto.com/
If you’ve been inspired by Jo’s fundraising adventure, visit www.justgiving.com/fundraising/jo-goodall2.
Jessie Ace on how she's found purpose thanks to her diagnosis
You might remember reading my story back in March 2019 (issue 114 New Pathways page 14, How you react to your situation defines you as a person) where I explained how I’d been diagnosed ages 22 just after university.
I’d studied for three years on a design craft degree, and I’d set up a business in my second year as an illustrator. I’d worked so hard to build that business to make sure I had a way of earning money when I left. I had an agent ready to represent me at trade shows worldwide, I had a children’s book deal, and I had my work ready to be stocked in boutique stores all over the UK. Life never goes to plan, though, does it?
Things didn’t start to get better till about four years after I was diagnosed. Luckily my left side came back, and my right hand that also lost feeling a few weeks after my diagnosis came back too. But by that time, I’d lost all confidence in myself. The agent, book deal, and boutique stores all disappeared. I felt like I‘d lost who I was. I didn’t trust my body anymore.
It wasn’t until I joined my then-fiance and started our wedding advice business for brides to be that I started sharing more of my story. Until this point, I hadn’t told anyone about my MS. Brides started asking me for help with how to plan their wedding around their illness. It was at that point I realized my story could help someone else.
Now, seven years after my diagnosis, I build my confidence, and now I do things I never thought I would.
Somehow, unconfident, shy little me is the host of the DISabled to ENabled podcast, interviewing famous radio DJ’s, Paralympians, celebrity chefs, CEOs, and people who, like me, got a diagnosis and found a way to help others.
Even the ENabled Warriors in our Facebook group get involved in asking questions, which I love.
I’ve now worked with the biggest MS charities; writing, illustrating and sharing my story, and talking about the things that don’t get said. My words and illustrations help to inspire others with chronic illnesses live their best lives, filling the internet with positivity in case doctors say, as they did to me, to ‘go home and google it’.
The thing I’m most proud of is that I’m now an author! I created the ENabled Warrior Symptom Tracker to help people with chronic illnesses track and manage their symptoms and lifestyle. It also enables you to keep accurate symptom records so you can access the best possible treatment. I’m giving a donation to MS-UK if you order it here Order symptom tracker
Waking up with a numb left side gave my life purpose and meaning. I decided to turn around in that negative state and chose instead to be the change I wanted to see in the world.
I would love to find out about your diagnosis story, so please get in touch with me. Find me @DISabledtoENabled on Instagram or in our Facebook group ‘ENabled Warriors’. Make sure to catch my live Instagram videos.
I don’t like the term ‘DISability’, find what why on www.JessieAce.com.
Sarah Cant’s MS nurse recommend she try MS-UK’s Counselling service
I have had counselling before for depression, but being diagnosed with multiple sclerosis (MS) is something of a shock! It was recommended by my MS nurse, so I looked it up on MS-UK’s website and it seemed like an excellent idea. The weekly sessions by phone, with a voluntary contribution, were very helpful. I knew that a good counsellor doesn't tell you what you should do, but helps you think about how to see things differently and cope with life.
Obviously 2020 has been a completely different kind of year. I postponed my first appointment as my husband was ill, the week before that he had been admitted to hospital and the Prime Minister had announced lockdown, so I was overwhelmed. But I was glad to have this opportunity to learn to cope better, as well as coming to terms with MS.
I have reduced my Prozac. I have been making an effort with friends, calling and texting more. I am learning to be kinder to myself and others, so hopefully my husband benefits too.
Society has started to learn the importance of good mental health. The service by MS-UK is excellent. I guess in a way that I am used to living with a disability or chronic condition as I have been deaf from birth, but I have learnt some new ways to cope.
Click here to find out more about MS-UK's Counselling service
As the mercury looks set to climb again this week, Martin Baum recounts his struggles during the recent heatwave
Picture the scene. To say I’m overheating would be an understatement. I am literally dripping in my own perspiration and it just won’t stop.
For almost 40 years I have endured fatigue, speech and sight issues, as well everything else that goes with having multiple sclerosis (MS). Disconcerting, then, that I found myself at 5.30AM in the morning recently on the kitchen floor, completely starkers (as you do), door open, overwhelmed by pulsating beads of sweat that refuse to abate no matter how vigorously I try to towel myself dry.
Fortunately, though, my wife Lizzy was there to calm me and sponge me down for almost an hour. Some might say lucky me and, in different circumstances, I might agree. I don’t doubt the recent heatwave was a major contributory factor but, nevertheless, the feeling of not being able to find an off switch for my body thermostat was very distressing.
But Lizzy’s a practical woman who not only knows how to reassure a percolating stark-naked man but also, thankfully, how to Google heat sensitivity with MS.
Here is what she found.
‘MS damages the protective sheath around nerve cells in your brain and spinal cord. This slows down nerve signals so your body doesn't always respond the way it should. Heat can slow these signals even more. MS can also affect the part of your brain that controls your body's temperature.’
It was difficult for me to process that information along with the birdsong that informed me that morning had broken. But then, as I have found, being an MSer brings with it a myriad of surprises, or should that be challenges, that make life that little bit more character building.
Over the years I have learned to live with mixed brain signals that have fooled me into thinking that a bowl of hot soup was cold. Or times when my brain had hoodwinked me into thinking that walking backwards instead of forwards was a better idea. So now these transmission glitches that cause me to seriously overheat can be added to my MS martyrdom.
But I am far from down, and nor do I consider myself a lost cause. We’ve bought cooling gel pillows and a high-tech fan for the bedroom, so next time the mind wants what the body can’t give, it won’t be through lack of trying!
We chat to 35-year-old Beth Graber from Cornwall about how counselling helped improve her mental health
Earlier this year, Beth undertook MS-UK Counselling sessions because she was at a time in her life where she felt she needed extra support and wanted to turn to someone neutral who could help. MS-UK provides a counselling service specifically for people with multiple sclerosis (MS), both over the telephone and via Zoom.
What were you expecting from counselling?
I was expecting a friendly ear and possibly advice, and maybe just someone to be able to open up to.
The service was fantastic. I found comfort in the familiar voice each week and felt I could open up so much more freely over the phone, without judgement, rather than feeling anxious face-to-face.
What benefits did you notice?
I understood more about myself, and about self-care and self-love. I realised I was being way too hard on myself. I started to understand more about why I was behaving in certain ways and instead of punishing myself, I began to take more care of myself mentally.
I realised that on the days I couldn’t physically cope, it was OK to rest and I stopped beating myself up for being ‘lazy’ – rest and recuperation are very important. I cannot blame myself for having MS and I came to realise how strong I am for actually living with my condition.
Being able to open up and ask for help from others was a big deal for me and this was made easier by having counselling.
Did it benefit any of your personal relationships?
I felt I could open up more to friends and family, so this made it easier to communicate. I started to be more honest and not hide things, or how I felt. I was also able to ask for help.
What would you say to someone with MS who is struggling to cope?
I would say definitely try counselling. Having someone at the end of the phone to listen and just be there makes you feel so much better. If you are like I was, and keep in how you feel and don’t look after yourself emotionally, you will definitely see the benefits with counselling. It’s very true what people say – it’s good to talk!
Hannah Morris on how feeling guilty about your kids is only intensified by a condition like MS
I recently confided in a friend because I was feeling pretty fed up of not having my own space any more thanks to the COVID-19 lockdown. I love my kids to bits. I’d do anything for them, really I would, but I also need a bit of my own space and peace each day too.
It felt wrong to have such feelings towards the very children that I have given birth to. I had reached a point of frustration that I just needed to get it off my chest. And, at such a low point for me, I needed that shoulder to cry on. Her first response was ‘mum guilt is real’. I had never heard of this term until this moment, but it made so much sense.
What is mum-guilt?
There are so many reasons why we mums experience overwhelming feelings of guilt. To name a few...
Most mums experience this to some extent at some point, but for people with multiple sclerosis (MS) these feelings can be exacerbated further as a result of some of the symptoms of MS.
For me personally, there are three symptoms in particular that have an indirect effect on my level of mum guilt – cogfog, sensory overload and fatigue.
How to help yourself have a break from this feeling (practically)
Firstly, let’s begin with how not to do it. For me, my mum guilt has been particularly noticeable at this time because I’m with my children 24/7 without the usual break that I get when they are at school in the day. Without that natural break I sometimes find myself staying up late just to get that peace, which of course had the knock-on on effect of increasing fatigue and grouchiness the next day!
In open discussion with other mummies with MS I’ve learnt some great practical tips from them that can help to reduce the impact of common MS symptoms impact on parenting and therefore reducing the level of mum-guilt as a result.
How to help yourself have a break from this feeling (emotionally)
As my friend said, ‘mum guilt is real’ and it truly is, especially for those of us with MS who have additional challenges to manage too. It’s not easy, but there are ways that we can make things easier for ourselves.
As part of my research, I am hoping to support others in the same situation 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.
Or you can go directly to the survey by clicking here
Joanna Livermore talks us through her long road to diagnosis, embracing lifestyle changes and the positives she’s taken from having MS
My first symptoms started back in 2010. I’d not long moved up to Greater Manchester from Essex. My feet started tingling. I remember walking from my car to work one morning and I was wearing ballet pumps. I couldn’t keep them on my feet – all sensation was gone from them and they just felt really cold. That sensation gradually travelled further up my legs, and I kept switching between feeling hypersensitive to feeling nothing from the waist down. I went to see my GP, who referred me for an MRI scan. I never heard anything back from the scan. I didn’t chase it so I assumed it wasn’t anything serious or worth worrying about. Whilst that sensation I was experiencing is nowhere near as bad as when it started out, it’s never really left me.
Between 2010 and 2017 I continued to pick up on odd bodily quirks. For example, I experienced random leg buckling, losing my balance without explanation, and even what I now know to be the multiple sclerosis (MS) hug (where you feel as if there is a tight band around your chest).
I could explain away everything though, from working too hard in the gym, to a sensitivity to caffeine. I distinctly remember one relapse where I spent about two weeks with my head over the toilet as I was persistently and violently sick from vertigo and double vision. Even at that point, aside from my GP suggesting that I might have had a stroke, it never seemed to cross anybody’s mind that I had MS.
That all changed in June 2017 when I lost my vision in one eye. After seeing my optician I was referred to St Paul’s eye unit in Liverpool and after three months, a lot of tests and loads of people asking me if I had tingling in my legs, I was told that I’d had optic neuritis and that I might have MS.
After the initial shock of being told that I might have MS, honestly – I didn’t expect it at all – my world fell apart. I didn’t get my confirmed diagnosis of MS until four months later and that period of time between being told that I might have it and it being diagnosed was the toughest wait I’ve ever experienced.
What it did do, though, was give me the time and space to process that I was going to be diagnosed with a serious medical condition, whether that be MS, or something else. I had counselling through my work’s employee assistance programme to come to terms with what was ahead, which really helped me to prepare mentally. When the diagnosis finally came, it was a relief. Limbo had felt worse than the reality. You can’t do anything in limbo. Life is uncertain. You can’t move forward.
To read Joanna's full story, download the lastest copy of New Pathways for free! Download free copy
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