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Living with MS: My Personal Story for MS Awareness Week
Written by
Georgina, Founder of Purpl
Published on
April 28, 2025
Every year, MS Awareness Week gives those of us who live with MS a chance to come together, share our stories, and shine a light on what it really means to live with multiple sclerosis.
Today, I am sharing my own journey, one that has been filled with unexpected twists, challenges, and incredible lessons. Learn about my MS diagnosis, my approach to living with a long term condition and how I eventually launched Purpl. My story is a reminder that while MS is a part of my life, it does not define who I am.
I hope by opening up about my experiences, it will not only raise greater awareness of MS but also give others living with this condition the strength to keep moving forward. Here is my MS story…
Thanks for reading, Georgina – Founder of Purpl.
With the Greatest Joy Came the Greatest Blow…
In November 2002, I gave birth to my son Jake. I was 26 years old and had an amazing pregnancy – it was text book perfect. I had been a nanny in America when I was 19, and looked after a newborn baby and 18 month old twins (who I am still in touch with today), so managing one baby was easy in comparison.
I was a young mum (I didn’t feel that way at the time) and a real go-getter. Always busy, always working hard and wanting everything in life to happen right now. I worked almost up to the day that I gave birth (the hospital was literally 5 minutes walk from my office), and then went back to work after 3 months due. I was a contractor at that time, and couldn’t afford a long maternity leave.
Did you know that the traumatic experience of giving birth can trigger an MS relapse?
With hindsight, I am pretty sure I had MS for a while and that was why I felt so great throughout my pregnancy, as it’s quite common for pregnancy to suppress MS symptoms.
Four Months Later…
I went back to work in March 2003 and in April I had my first MS episode, although I had no idea at the time. I was suffering with some headaches and then I started having double-vision in my right eye. I saw my doctor, told her I was pretty sure it was down to having a new baby, being back at work full time and working in front of a computer all day long. She did suggest an MRI but I decided my theory made sense, and so didn’t want to have one done.
Six weeks or so later, it happened again and this time I took her advice and went for the MRI. Typical hypochondriac moment, I was convinced I had a brain tumour so basically panicked throughout the MRI.
A few weeks later, I received a letter saying my results were back and that I had an appointment with a neurologist. It was bad enough panicking during the scan, but OMG – this suddenly felt really scary.
I can remember that appointment like it was yesterday. The consultant informed me that I had some inflammation on my brain and, that combined with my eye episodes, determined that I had benign MS.
He told me to go away and forget about it, and that it will probably never impact me.
There is no such thing as benign MS, you either have MS or you don’t. The only difference is whereabouts on that pathway you are. It was frustrating that I wasn’t given better advice, BUT on the other hand I then spent 13 years until 2015 without the MS having any real impact on my life. In fact, I never even thought about it! So, in hindsight part of me can see the benefit of him saying this, but then the other part of me thinks I was naive to the realities of MS and perhaps I could have done more to slow down the future progression.
One thing you should also bear in mind, that in 2003 we had no smartphones, the internet was much more basic than it is today. There wasn’t hundreds of articles, support groups, forums etc… In some ways, not having all that information was a benefit. I am though, a true believer in everything happens for a reason, and had I lived my life thinking I had MS, researching MS and allowing it to consume me, perhaps I wouldn’t be who I am today.
The First 13 Years…
It would take me forever to recap the years between being diagnosed and my biggest MS relapse, so I will try and give you a brief overview.
The world keeps on turning – from divorce, to being a single mum, to a new family!
2003 to 2006
I loved being a mum. Aside from some minor ‘psychosomatic symptoms’ after my initial consultant experience, I forgot about the MS and just carried on with my life.
During that time I had an issue with numbness in my left hand – my pinky and ring fingers were impacted and after seeing a consultant, but they put it down to a compressed nerve. I was doing a lot of design work during that time and often had my elbows on my desk, which is what they figured had caused the numbness. I know now it was the MS rearing it’s head.
At the end of 2006, my husband declared he was leaving us. He had been unfaithful. I cried for about five minutes and then went and found a new job. I have always been someone that just gets on with it and powers through. However, I imagine the stress I went through during that time wouldn’t have helped the MS within my body, as we now are well aware of how stress impacts flare ups.
Health-wise, I suffered with IBS, but again MS was never mentioned – it was put down to the stress of the divorce and changes in my eating routine. When I get stressed I find it hard to eat properly, and I dropped a dress size during that time, so it made total sense that it would impact my gut health. Of course, today we know that autoimmune diseases are linked to gut health.
2011-2014
Single life had its highs and lows, but ultimately, it led me to meeting my husband, Stu. He’s my rock and without him life would have been so much harder without him at my side, supporting me every step of the way.
Health-wise during this period I suffered from lower back pain, which lasted for about two years. I was referred for an MRI, as physio made no difference. I vividly remember a phone call with my doctor at that time saying the MRI showed white patches on my spine, but she said they would have been there when I was diagnosed in 2003, so didn’t think they were relevant!
When I look back now I seriously have to question how this wasn’t taken further; why wasn’t I referred to a neurologist? But of course, I was living in MS denial, so it suited my thought process. Bizarrely, the backache disappeared about two weeks before our wedding – I kid you not, I was at work and slammed my ring finger in a steel safe door! I remember the pain and the shock like it was yesterday! My boss took me straight to A&E. My finger was bruised, but thankfully still there and moving. More importantly, my back no longer hurt!
Have you ever heard of pain displacement theory? Well, according to my osteopath at the time, this was a clear case of that; the shock of the intense pain from the accident stopped my back pain. It never came back… bizarre, hey?
Again, hindsight is wonderful thing – I never put two-and-two together at the time, but for those few years I had a Mirena coil and (with the knowledge I have today about the impact of my hormones on my symptoms) I have to wonder whether the coil had anything to do with my backache and what was to come…
2015 onwards
In February 2015, we went to New York in the freezing cold. I wish I had known then that extreme weather can cause MS relapses. I don’t know why this is, all I know is that MS has ruined my love of sunbathing and I won’t be skiing ever again. It was just so cold and I had no idea it was damaging my body!
We had already booked a neurologist appointment for April. I know that I said MS wasn’t a key part of my life, but as with anything it was there, lingering in the background. Given I had my first relapse after my son was born, I wanted to investigate the risk to my body if I was to have another child. Spoiler alert, we got a puppy instead of having another child, and she’s now 10!
That consultant appointment was the turning point in changing my life…
Words Have Power
The consultant I was meant to see was sick, so instead we were met with a young locum who had just qualified. I remember very clearly the first thing he said to me – “You are walking with a MS gait”. This was news to me, as I had never really considered how I walked. At this point my husband pipes up that he always thought I walked funny because I was short (I have no words). The locums next words stuck very clearly in my mind, he said “I think you have progressive MS”.
Excuse my language, but WTF!
He hadn’t even gone over my medical notes, he had no MRI results, he just came out with those words. And, of course, they stuck in my mind.
But if thought corrupts language, language can also corrupt thought.
George Orwell
As far as I was concerned, MS had not really had an impact in my life to date. I was walking fine, clearly this doctor was making very quick judgments – or so I thought. At this point, I was ignoring memories of tripping over on occasion or struggling to stay upright when drunk and dancing – surely alcohol induced! Anyway, they say words are very powerful and how right they are. It’s almost as if from that moment onwards I became more aware of my walking and – combined with visions of being progressive and ending up in a wheelchair permanently – it accelerated that decline within week. I remember leaving that meeting feeling as if my life was over.
I was booked in for an MRI and a meeting with the local MS nurse and off I went. A ten minute meeting that changed my life – whereas I am sure that the locum had no idea of the impact he had had on me.
I met with my MS nurse a few weeks later; she was lovely and one of the first things she said was that he should never have told me that. Without any evidence, without going through all my medical records (which he hadn’t), and without having my MRI he was not in a position to label me as anything. I really hope someone fed this back to him so he didn’t do this to other people. It wasn’t just labelling me as progressive, it was the way he said it – so laidback in the same way he might offer you a cup of tea. Did he not realise the impact these words would have?
I Don’t Want a Label
A month or so after my MRI scan I received a letter which didn’t really make any sense to me, and didn’t give me any real insight into my MS situation. All I do know is that during this time my walking had deteriorated massively. It was almost like he had cast a spell over me. I had another appointment booked in October of that year with the original neurologist, so I just had to wait until then and try and put thoughts of wheelchairs to the back of my mind.
October came along, with a letter saying my appointment had been postponed until January – On a serious note, I love our NHS but do they not understand how torturous the waiting is for people in situations like this. I needed answers. In January they contacted me again to say it was being moved again until February. I think I broke down in tears at that point – no one should be made to wait that long.
I finally met my consultant at the end of February 2016 – almost a year after seeing the locum. My walking at this point wasn’t great but I was still walking unaided, just really badly at times.
We walked into that appointment and the first thing she said to me was, “I am sorry, we, the NHS have let you down, I have been going over all your medical records, and we should have seen you years ago”.
Was I angry? Yes. Not with her, and I was only angry for a short while, but it is what it is and as I often say, “everything happens for a reason”. She then proceeded to tell me that she believed I wasn’t quite progressive yet and there was a small window of opportunity to have some treatment.
She gave me a choice of two disease modifying treatments (DMTs). I had very little time to make a decision, so I chose Lemtrada (an immune suppressant treatment) and started the treatment in May 2016.
By the time I finished the two year treatment course, I could no longer walk properly. An MRI was scheduled. I will never forget the day my consultant wrote to me with my results, in bold writing she had put that the MRI showed that I was NOT progressive.
I broke down in tears. I had lived with the fear of being progressive for 18 months with the locum’s words constantly in my brain. It was amazing to have that in writing and at the time it was such a great feeling. She left our hospital in 2017 and since then I have been told different things by different consultants.
My thoughts? I don’t actually care what you label me, as I’ve learnt so much since then. If I could go back in time, I would have chosen an alternative route but at that time I had no knowledge of anything MS related and didn’t know I could manage my MS with alternative therapies and changing my lifestyle. Since 2018, that is exactly what I’ve done.
Pieces of the Puzzle
Over the last 7 years, I have learned a lot about how best to manage my MS. I always refer to the components as pieces of a puzzle. You can’t do one thing in isolation, so if you are looking for a quick cure there isn’t one.
Exercise
Without a doubt, exercise is key. The saying ‘use it or lose it’ is so true with MS. At the moment, where I am so busy trying to make Purpl a success, I don’t have as much time as I would like to focus on my exercise, but I know when I get back to it, my brain will remember how to do things. If you aren’t aware of Trevor Wicken and the MS Gym then I highly recommend looking him up. I learned so much from Trevor after my treatment – he was the reason I started walking with two walking poles as opposed to one. This is so you can really focus on your posture.
Today, I still exercise frequently. We turned our garage into a home gym during covid, so that I could still keep my body moving. My workouts are not high impact but more functional; never forget the importance of squats and keeping those glutes alive! Believe me when I say re-training your body takes years, so if you are newly diagnosed I would recommend keeping on top of your exercise routine and looking up Trevor Wicken.
Diet
Recognising and changing my diet was tough, but MS is an inflammatory disease and therefore cutting out foods that cause inflammation makes sense. It took me about two years to transition over to no dairy, no gluten, no refined sugar, no alcohol, no tomatoes, no legumes, no corn, no soy, no seed oils and ‘no fun’, as my friends say! However, my body feels so much better without these things. I am not a saint, and I do allow myself the occasional treat like afternoon tea, because life is too short, but it is very rare and I would say 95% of the time I stick to my strict diet.
There are so many amazing alternatives out there and some great products that mean you don’t have to go without – at first it will feel like a major challenge, but honestly eating well will really help with your condition, and keeping your body as healthy as it can be will pay off.
Alternative Therapies
I am a big believer in these and do many different things to help keep my body moving. This is where my PIP money goes, and I spend more than that on my health as I want to stay as independent as I can. I see a chiropractor once a month, and I can always tell when I am due a session! I have a neuro-physio session every other week, which is really key to learning how to retrain my body to move normally. When you have MS, your body becomes lazy – it quickly learns alternative ways to move when the spasticity kicks in – so bad habits are formed. Unlearning these habits takes a very long time, so my advice to anyone reading is to be aware of your movement and recognise when your body is trying to take the easy path.
I’ve recently gone back to having reflexology and my feet are loving it. I really struggle with my circulation in my legs and ankle area, this is due to having very tight calf muscles. Already I am seeing a benefit with having a regular session. I am toe walking less, which will help lengthen my calf muscles and should improve my foot drop over time (well, at least, I hope it will!).
I used to go for hydrotherapy – right now I just don’t have the time, but I highly recommend it. I miss it and I will definitely go back once I have more time. The water is great for walking practice, as you aren’t fighting against gravity, and there is no fear of falling over.
Supplements
For more these are key, especially vitamin D3. I have no medical training and I am not going to tell you what you should or shouldn’t take. For me, I take 20k ui of vitamin D3 per day, this is more than the NHS will advise, however, I previously did the Coimbra Protocol and was on a much higher daily dose under the supervision of a doctor. I stopped the protocol as it was making my already strict diet even stricter, however I did feel really good on it.
I worked with an autoimmune nutritionist to get the basics of what I needed, and since then I have adapted my regime based on what works for me. Alongside vitamin D3, I take magnesium, collagen, omega 3, k2, zinc, and a few other things. Do your research and get some advice so that you can work out what is best for you and your life.
Assisted Technologies
My husband calls me the gadget queen – but look, we live in an age whereby there are some amazing advances in technology, especially around health and improving quality of life. I am lucky enough to have a Bioness which helps with my foot drop, making it easier for me to move around and not trip over and fall. It is a functional electrical stimulator, so it sends signals to my nerves to activate them when I walk – it’s very clever.
I also have a Mollii suit – this also works of the same basis – sending electrical pulses through electrodes to switch on and off the muscles in your body, helping to reduce the spasticity. It was originally designed for people with cystic fibrosis, but they realised it helped patients with MS. You are meant to wear it every other day for an hour and you have it programmed by your neurophysio who will monitor you and adapt it as needed.
These incredible pieces of equipment aren’t cheap, and are actually one of my reasons for launching Purpl – so I could one day start a foundation to give grants to others who would benefit from assisted technologies and improve their quality of life. This is why I am so keen to make Purpl a success, so that I can fund the foundation.
Mindset
To me this is the most important part of the puzzle. I have always had a positive attitude to my condition, and will try anything to help my MS symptoms. I believe it was Gabor Mate who said that 98% of diseases are caused by stress and I believe him. Stress is a key factor in autoimmune diseases and causes flare ups. His book ‘When The Body Says No’ is a must read – it will make you change the way you live your life.
I am a true believe in everything happens for a reason, and I know I am on this journey because I am meant to be. I am healthier and calmer than I have ever been in my life – it’s not all negative. MS has made me a better person in many ways.
Being Diagnosed with ADHD
In May 2024, I was diagnosed with ADHD and suddenly everything started to make sense.
I’ve spent much of my life feeling like I had the endurance of a Duracell battery. Nothing ever really fazed me. But internally, my overactive imagination, which is my power, was also my worst enemy. That endurance did not manifest as hyperactivity in behaviour – far from it, that hyperactivity was in my brain. To me, it was normal. I could never understand why people always commented on my drive and ability to just get on with things – wasn’t everyone like that?
But there is always an opposite to everything in life and my internal brain was constantly in a state of fight-or-flight. I am defensive – it’s a protection technique, because my brain always thinks something is wrong.
I can see every situation as a positive and negative. This makes everything really difficult, because I will think the absolute worst in any situation, and even though it is completely unlikely to happen my brain will still go there. Imagine putting your brain through the worst scenario every time? Imagine the constant damage that does to your body and to your nervous system? This in itself has made me question the link between undiagnosed ADHD and my multiple sclerosis. As I said earlier, most diseases are caused by stress and I have lived most of my life in an anxious state of mind, which would have caused constant stress on my nervous system.
Since being on the ADHD medication, I have seen an improvement in some of my MS symptoms – I always thought my brain got too involved! My walking is still rubbish, but it is even worse when my meds wear off, which I find fascinating. My balance has also improved, which means I can focus even more on certain exercises to help build my strength. I wonder if I had more time to just focus on my health, would things improve even more? I speak to many disabled people these days, and so many women with autoimmune diseases are either diagnosed with ADHD or have children with it, and think they might have it too. It will be interesting to see whether more studies open up to look into this as time goes on.
Purpl: A Mission-Driven Business
In 2023, I recognised how expensive it was living with a disability, and it felt unfair that everyone else got discounts (students, key-workers, carers, NHS, etc.) but the disabled community had been left behind. So, I decided to do something about it.
In 2024, I launched Purpl, the UK’s first disabled discount website to offset the cost of living with a disability.
I want to help people save money, but Purpl also has a real social cause at the heart of it. It’s about giving back to disabled charities, bringing the community together, and my long term plan is to launch a foundation so I can give grants to those who need extra financial support. We also actively support disabled entrepreneurs and work closely with people within the community with a common goal of helping to make a difference.
We now have over 250 brands working with us, including brands like Morrisons, Poundland, Hoover, Gousto, Med-Fit, O2, The Fragrance Shop, and many more. Plus, more offers and brands are being added every week.
It’s really important for me to express here that Purpl is not just about discounts; it’s about bringing people together. Our Purpl Life section is filled with stories from our community members, guides to applying for benefits, and much more. No-one gives you a handbook when you become disabled, so I want to also ensure we have relevant information and signposting for further advice.
It’s really easy to sign up to Purpl and we accept many different document types. Read our ‘How to Join’ page on the website which will guide you through the process.
It doesn’t matter what your disability is, as long as you have one of our accepted documents you can join and access discounts. We accept disability benefit letters, blue badge (photo side), disabled bus and train passes, the Access card, CEA card, Disabled ID (DID) Card, and more.
We are always happy to help, so please email us if you need support and remember to check your junk or spam folder for our reply. You can also message via our social channels @purpldiscounts
MS-UK – Our Charity for Q2 2025
To finish off, I just want to let you know that every quarter we choose a charity to work with. During that time, we work with our brands and give a percentage of funds generated from promotional work to the charity for that period. Naturally, due to my own MS, it was only right we selected an MS charity for this quarter. I am delighted to be working with MS-UK; they are a fantastic charity who offer a wide range of support to those living with multiple sclerosis. To find out more, please visit their website.
About the Author
Georgina is the founder of Purpl Disabled Discounts, she understands the financial challenges that come with living with a disability as she has MS and ADHD. She is on a mission to help the disabled community save money through discounts on everyday products and services, as well as creating a place to support every person living with a disability in the UK.
