Disclaimer
The information provided in this blog post is for educational and informational purposes only and is not intended as medical advice. I am not a medical professional, doctor, or healthcare provider. All content, including tips, recommendations, and personal experiences shared on this blog, are based on my own research and/or personal journey and should not be considered a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or another qualified healthcare professional with any questions you may have regarding a medical condition, including multiple sclerosis (MS). Never disregard professional medical advice or delay seeking it because of something you have
read on this blog.
My Advice to Someone Newly Diagnosed with MS
An MS diagnosis is a life-altering moment. For me, it flipped my whole world upside down, just when I thought I had it all sorted. My diagnosis came hand-in-hand with an aggressive attack, which all happened very quickly, leaving me very little time for internal processing. I went from working full-time to bed-bound over several weeks, then plunged into the world of disability, rehabilitation, speech and occupational therapy, physio, and the glamorous world of neurology. It took months and months of hard work every day to heal my body, along with lots of reflection, research and learning. During that time, I had to really dig deep and draw on a lot of inner strength to pull myself through and I've learned a lot along the way. In this post, I've summarised the critical points that have helped me immensely with that recovery, so that it can hopefully benefit you or someone you love.
I hope it helps x
If you are anything like me, I immediately had a million questions going around my mind...what is MS? ...what will happen to me? ...will I live a normal life again? There are a lot of unknown’s. Then all the emotions kicked in, and I couldn't help but feel an overwhelming sense of grief. But please do your best to stay as calm as possible right now. Something I didn't know at the time and have certainly learned since then is that our emotional state impacts our whole physiology. The mind and the body are connected, and they have a beautiful relationship with each other when everything is in harmony. This seems so obvious to me now, but it wasn't back then. An unhealthy, stressed and worried mind will make for a tense body pumping more and more stress hormones and possibly worsening your state and therefore triggering a worsening in symptoms. I think the stress I felt prior to my diagnosis definitely contributed to my downfall and the continual stress from the unravelling of my condition over the weeks caused me to panic, but the panic wasn't helpful. I worried, and I stressed, I panicked, and I cried for weeks while my body got worse and worse. Through that time, I declined so quickly till eventually I'd hit rock bottom with my body and I couldn’t function at all. I'm not saying this will happen to you, but I do know it's an incredibly tough time and grief is a natural part of the process and expressing it is really important (discussed further down this post). But constant unhealthy worry and stress when you're already sick and need to heal will not help your body at all. Here's what I wish I'd done in those weeks when I was stuck in hospital.
1. Upon diagnosis...
Try your best to stay as calm as possible especially if your body is giving out on you - everything will be ok and you will get better, eventually. You must do your best to truly believe this. Your mind is such a powerful tool. Believe you can and you will, no matter how hard it gets. You must start to truly feel and visualise yourself getting better and seeing yourself doing your favourite exercise, hobby, or activity again, such as travelling, going to the beach, or spending time with your pet. Whatever it is that you want, spend time dreaming about it. Your new mantra is...
I am strong, I am vital, I am healthy, I am bursting with energy. Healing energy constantly flows through every joint, organ and cell in my body every second of every day.
Repeat this to yourself constantly throughout the day and when times get tough.
If your vision is good, try writing out your thoughts in a diary and listing all the positives in your life and focus on them and how grateful and blessed you are for them. Every morning when you wake up recite 20 things you're grateful for. This has been shown to increase happiness by 25% and is a great shift into gratitude and happiness.
Start meditating daily to help you re-centre, calm down and get in the right frame of mind to begin healing your body. There are several great meditation apps available these days, as well as anything from these guides I've found extremely helpful over the years, "6 Spiritual teachers I love - they will inspire, motivate and help you heal". Jump on their YouTube channels and listen to their free content. They're all very wise, and inspiring and easy to listen to while you're resting in bed.
If your speech is good, try talking it out with people you love and trust if you feel like it, to help you put things into perspective. I did this a lot with my mum and Ben, and it was the best thing, because I thought my life was falling apart, I couldn't get any clarity. But they helped me see that it wasn't, and they were there to help me all the way. Just knowing that gave me so much strength to keep going. Other great things you can do to stay happy are listen to uplifting music - make an empowering playlist, there are so many great empowering songs that really lift the spirits. Exercise if you're able to and get some natural endorphins going. If not, try to get outside in the sun and get some fresh air and vitamin D. Vitamin D3 is incredible stuff. I have a video coming up in this post on just how great it is. Or you could watch funny movies, comedy shows, or listen to funny podcasts. Ben got me Seinfeld and Little Britain box sets (CD's) to watch while I was in the hospital. Each evening after he visited he'd set me up with the laptop and I'd laugh myself to sleep, they took my mind off my situation instantly and helped me feel more like myself. Laugh as much as you can as laughter eases pain, stress and anxiety - as shown by Norman Cousins (1915–1990) who pioneered laughter therapy. Try to laugh through the pain if you can. Then do the following when you're able to read and digest information.
I am strong, I am vital, I am healthy, I am bursting with energy. Healing energy constantly flows through every joint, organ and cell in my body every second of every day.
Repeat this to yourself constantly throughout the day and when times get tough.
If your vision is good, try writing out your thoughts in a diary and listing all the positives in your life and focus on them and how grateful and blessed you are for them. Every morning when you wake up recite 20 things you're grateful for. This has been shown to increase happiness by 25% and is a great shift into gratitude and happiness.
Start meditating daily to help you re-centre, calm down and get in the right frame of mind to begin healing your body. There are several great meditation apps available these days, as well as anything from these guides I've found extremely helpful over the years, "6 Spiritual teachers I love - they will inspire, motivate and help you heal". Jump on their YouTube channels and listen to their free content. They're all very wise, and inspiring and easy to listen to while you're resting in bed.
If your speech is good, try talking it out with people you love and trust if you feel like it, to help you put things into perspective. I did this a lot with my mum and Ben, and it was the best thing, because I thought my life was falling apart, I couldn't get any clarity. But they helped me see that it wasn't, and they were there to help me all the way. Just knowing that gave me so much strength to keep going. Other great things you can do to stay happy are listen to uplifting music - make an empowering playlist, there are so many great empowering songs that really lift the spirits. Exercise if you're able to and get some natural endorphins going. If not, try to get outside in the sun and get some fresh air and vitamin D. Vitamin D3 is incredible stuff. I have a video coming up in this post on just how great it is. Or you could watch funny movies, comedy shows, or listen to funny podcasts. Ben got me Seinfeld and Little Britain box sets (CD's) to watch while I was in the hospital. Each evening after he visited he'd set me up with the laptop and I'd laugh myself to sleep, they took my mind off my situation instantly and helped me feel more like myself. Laugh as much as you can as laughter eases pain, stress and anxiety - as shown by Norman Cousins (1915–1990) who pioneered laughter therapy. Try to laugh through the pain if you can. Then do the following when you're able to read and digest information.
2. Stay calm, centred and positive
You might want to start researching and finding out all about MS online, as I did; it was the first thing I turned to once I was able to, but I found it extremely confronting, because most, if not all the information I was coming across had no regard for how nutrition and lifestyle changes heal the body. Keeping in mind that this was in 2015 and the world has changed significantly since then in terms of research and information. But if you're in a vulnerable state right now, then try not to Google at all until you're emotionally strong enough; it's not worth the toll it will take on your mind and your body, which could lead to more worry and tears. Once you've read the following books and understand the lifestyle and nutritional links you can google more wisely. Also, the internet tends to give us extremes because these get the most hits because they're the most interesting to people, sadly. But everyone with MS is completely different. Instead, go to your national MS society website like www.msaustralia.org.au if you're in Australia and register - they'll send you an information pack and stay in regular contact with support and interesting webinars on MS. These websites will have proper up-to-date information and current medical research you can trust.
3. Be careful with your
google searching
google searching
“Let food be thy medicine & medicine be thy food”
— hippocrates
4. Food & lifestyle changes are medicine - read these books as soon as possible
Recovering From Multiple Sclerosis - Real Life Stories of Hope and Inspiration By George Jelinek & Karen Law
Overcoming Multiple Sclerosis - The Evicence Based 7 Step Recovery Program By Professor George Jelinek
These books are absolute must-reads. Please order them now and read them as soon as you can. I think OMS give free copies to those newly diagnosed, so enquire through their website. I've been on OMS since around August 2015 and I've seen how my body has healed. I can't recommend this program enough, it's been an absolute godsend. If you've read my story you'll understand just how far I've come.
I am also on the medication Tysabri which I started in the hospital during diagnosis, and I will most likely stay on medication given how aggressive my onset was. But the reason I believe it's so beneficial to overhaul our diet and lifestyle is that the medications available for MS slow relapse and progression by a certain percentage (each are different) but they don't control and manage symptoms. However, diet & lifestyle changes can help manage symptoms, significantly impacting our quality of life and happiness. Plus diet and lifestyle changes have the added bonus of slowing relapse rates and disease progression as well. I believe it's a beautiful, holistic approach with only great benefits and no nasty side effects.
At the time I initially wrote this post back in 2018, I had all but a few symptoms left after three and a half years on OMS. In August of 2015 I had just learned to walk again, I went from a wheelchair to a walk-belt (a large velcro belt with handles on the side so someone could catch me if I fell), to a walking stick and prism glasses. It was all very glamorous and only mildy humiliating. I was freezing every 30 seconds for 20 seconds at a time whilst experiencing slurred speech, blurred vision and loosing my arm and leg co-ordination. I was resting every afternoon with overwhelming fatigue, sleeping 14 solid hours a night, sometimes more. I was constantly bashing into walls due to balance issues and dizziness. My nystagmus was debilitating and constant, and I couldn't focus on anything looking down at all.
I'm now 11 years post-diagnosis, and I've remained relapse-free in that time and had a son. I bike him to school and home every day, and mother him as best as I can with my fiance Ben and our extended family. I socialise, travel, cook, clean, exercise, swim in the ocean and prior to having Beau, I was back working part-time. Although I've had another diagnosis (unrelated to MS) and been put on the subsequent medications that have affected my dizziness and fatigue levels and a few other things, I function pretty well considering. My eyes have calmed a lot and I no longer suffer from slurring or freezing episodes anymore. Prior to being put on these medications, I really did feel like I was back to normal, which felt incredible. But I never would have believed anyone if they'd told me that I'd be doing so well 11 years later. It certainly would have saved me a LOT of tears and worry back then.
OMS is backed by research and was created by Professor George Jelinek who has MS himself. He's been relapse-free since his diagnosis for over 26 years. OMS will start healing your brain and your body, you will get better, symptoms will start to fade like mine have and countless others, and you will feel like your old self again. It gives you so much to look forward to and makes you feel great.
I highly recommend OMS because I've seen what it's done for my body. But there is also The Wahls Protocol which is based on paleo principles and includes meat. This is where you'll need to figure out what's right for you and what you can stick with long-term. But don't expect it to be easy transitioning onto OMS, it did take me a few months to get everything right. It was definitely a work in progress for the first few months as I tried to find the right foods to buy and make, and also learn what I could eat in restaurants (we generally eat Japanese - it's always the safest being mainly fish/sashimi and rice). The OMS website overcomingms.org is a great resource and hopefully this blog too!
I am also on the medication Tysabri which I started in the hospital during diagnosis, and I will most likely stay on medication given how aggressive my onset was. But the reason I believe it's so beneficial to overhaul our diet and lifestyle is that the medications available for MS slow relapse and progression by a certain percentage (each are different) but they don't control and manage symptoms. However, diet & lifestyle changes can help manage symptoms, significantly impacting our quality of life and happiness. Plus diet and lifestyle changes have the added bonus of slowing relapse rates and disease progression as well. I believe it's a beautiful, holistic approach with only great benefits and no nasty side effects.
At the time I initially wrote this post back in 2018, I had all but a few symptoms left after three and a half years on OMS. In August of 2015 I had just learned to walk again, I went from a wheelchair to a walk-belt (a large velcro belt with handles on the side so someone could catch me if I fell), to a walking stick and prism glasses. It was all very glamorous and only mildy humiliating. I was freezing every 30 seconds for 20 seconds at a time whilst experiencing slurred speech, blurred vision and loosing my arm and leg co-ordination. I was resting every afternoon with overwhelming fatigue, sleeping 14 solid hours a night, sometimes more. I was constantly bashing into walls due to balance issues and dizziness. My nystagmus was debilitating and constant, and I couldn't focus on anything looking down at all.
I'm now 11 years post-diagnosis, and I've remained relapse-free in that time and had a son. I bike him to school and home every day, and mother him as best as I can with my fiance Ben and our extended family. I socialise, travel, cook, clean, exercise, swim in the ocean and prior to having Beau, I was back working part-time. Although I've had another diagnosis (unrelated to MS) and been put on the subsequent medications that have affected my dizziness and fatigue levels and a few other things, I function pretty well considering. My eyes have calmed a lot and I no longer suffer from slurring or freezing episodes anymore. Prior to being put on these medications, I really did feel like I was back to normal, which felt incredible. But I never would have believed anyone if they'd told me that I'd be doing so well 11 years later. It certainly would have saved me a LOT of tears and worry back then.
OMS is backed by research and was created by Professor George Jelinek who has MS himself. He's been relapse-free since his diagnosis for over 26 years. OMS will start healing your brain and your body, you will get better, symptoms will start to fade like mine have and countless others, and you will feel like your old self again. It gives you so much to look forward to and makes you feel great.
I highly recommend OMS because I've seen what it's done for my body. But there is also The Wahls Protocol which is based on paleo principles and includes meat. This is where you'll need to figure out what's right for you and what you can stick with long-term. But don't expect it to be easy transitioning onto OMS, it did take me a few months to get everything right. It was definitely a work in progress for the first few months as I tried to find the right foods to buy and make, and also learn what I could eat in restaurants (we generally eat Japanese - it's always the safest being mainly fish/sashimi and rice). The OMS website overcomingms.org is a great resource and hopefully this blog too!
I came across these films while I was researching, and they helped me make sense of a lot of things. I found them fascinating, and they gave me a better understanding of the complexity of Multiple Sclerosis and what I have in my control to begin healing. I've realised that by gaining in-depth knowledge, it further compelled me to galvanise the changes I'd made. It helped me understand why nutrition, vitamin D, stress management, meditation and mind over matter are all integral for better health and wellbeing.
5. Watch these films - these are fantastic resources...
OMS recommends we get out in the sunshine 3-5 times per week on as much skin as possible, and if there's no sun we should supplement with 5000iu of vitamin D3 per day. I found this clip on YouTube during my early days and this doctor makes it so easy to understand. He explains exactly WHY vitamin D3 is absolutely essential in staying healthy and relapse free with MS, and the many processes involved in the body in order for the body to convert it into vitamin D.
Understand the power of vitamin D3
The Connection
A personal favourite. A beautiful film on the mind/body connection and how it affects illness. Medical doctors who are established and highly respected in their field talk about this powerful connection that can literally help heal our bodies. Dr Jelinek the creator of OMS features as well.
One of the first films I watched on the diet vs illness topic and is fantastic. This film is a must watch for understanding the meat and dairy industry and how increasing our fruit and vegetable intake while reducing processed foods is so beneficial for our health. Plus, how it can treat and alleviate so many chronic illnesses.
Forks over knives
Dr Dean Ornish is a great man. In this short Ted talk he addresses our genetic predispositions to certain illnesses and how we can positively change our gene expression through diet and lifestyle. I found this empowering.
Your genes are not your fate -
Dr Dean Ornish
Dr Dean Ornish
Dr Terry Wahls reversed her secondary progressive MS through her own research into nutrition and what the brain and the body need to heal. She's pretty incredible, and really made me understand just how important it is to get an array of different fruits and vegetables in my diet every day. I always think of her 9 cups a day plan and the three different groups eg. sulphur rich veges, colourful fruits rich in antioxidants and greens.
Minding your mitochondria -
Dr Terry Wahls
Dr Terry Wahls
Fibre also aids in regular bowel elimination. Regular bowel elimination is essential, especially for people with MS as we have a higher risk of experiencing constipation. But fibre is fantastic as it absorbs water and toxins, softens the stool, and effectively flushes them out of our system. But when increasing our fibre intake we MUST also increase our fluid intake.
This is a fascinating and entertaining documentary about the human microbiome, fibre-rich foods and disease. I've watched it 3 times now and will probably watch it again because it's so fun to watch. But each time it brings home exactly why eating whole, fibre-rich, plant-based foods is so beneficial for our overall health.
6. Focus of a variety of plant-based fibre
When I was researching MS in the early days after returning home from hospital, I kept coming across how important it is to drink litres of fresh, clean, filtered water daily. I found out that it's important for our bodies as it helps to flush the body of any toxins, excess hormones, pollutants and by-products. It also aids fibre in doing its job and keeping us regular. According to H.H. Mitchell, Journal of Biological Chemistry 158, the brain and heart are composed of 73% water, and the lungs are about 83% water. The skin contains 64% water, muscles and kidneys are 79%, and even the bones are watery: 31%.
Water is essential in helping our bodies feel and function at their best. I've noticed dehydration worsens my symptoms, including nystagmus, energy levels, concentration, dizziness, circulation, sleep, and my bladder. I've learned to make it part of my morning ritual now because I find it so important. As soon as I wake-up I drink a large glass of water, then another 1L throughout the day, plus lots of cups of herbal tea as well as smoothies.
Water is essential in helping our bodies feel and function at their best. I've noticed dehydration worsens my symptoms, including nystagmus, energy levels, concentration, dizziness, circulation, sleep, and my bladder. I've learned to make it part of my morning ritual now because I find it so important. As soon as I wake-up I drink a large glass of water, then another 1L throughout the day, plus lots of cups of herbal tea as well as smoothies.
7. Drink plenty of pure filtered water daily
This one is SO important!! and probably the 2nd most important thing I do, along with diet changes, since I've been diagnosed. Exercise benefits MS in so many ways, it’s an absolute MUST in my books. I just wouldn’t be doing this well without it.
When I was in rehabilitation and learning to walk again, the physios told me that a big reason why stroke patients don't ever walk again is that they have no core strength. This blew my mind and made me realise how important it is to keep my core nice and strong, and probably why the physios put me on the pilates reformer every day. I have core memories (no pun intended) of lying there sliding back and forth and looking out the window just crying. But they knew what they were doing because that got me up on my feet, with a lot of determinaion, and humiliation. It wasn't a glamorous process, but once I was up, I wasn't going back, and once I got home, I walked as much as I could. I was out most days practising and practising till eventually over the years it became smooth and natural.
Exercise also improves our circulation thus improving blood flow and oxygen to the brain, and it also produces endorphins, which lift our mood and make us feel happier. A strong core also improves posture, correct posture or a straight back held up with strong stomach muscles, will relieve the pressure on our bladder from slouching. OMS recommends exercise for 20-30 minutes around 5 times per week, preferably outdoors. Whatever you're capable of doing, even if it's stretching, try to do it as much as possible. Exercise also increases neuroplasticity, a term used when your brain expands and learns new pathways and ways of doing things.
My favourite exercise is walking. I go for long walks along the beach and up the hill, and when I come back, I’m always more uplifted and feel better. I also enjoy reformer Pilates, planks for core strength, arm weights and lots of stretching to ease muscle tightness, aches and pains.
When I was in rehabilitation and learning to walk again, the physios told me that a big reason why stroke patients don't ever walk again is that they have no core strength. This blew my mind and made me realise how important it is to keep my core nice and strong, and probably why the physios put me on the pilates reformer every day. I have core memories (no pun intended) of lying there sliding back and forth and looking out the window just crying. But they knew what they were doing because that got me up on my feet, with a lot of determinaion, and humiliation. It wasn't a glamorous process, but once I was up, I wasn't going back, and once I got home, I walked as much as I could. I was out most days practising and practising till eventually over the years it became smooth and natural.
Exercise also improves our circulation thus improving blood flow and oxygen to the brain, and it also produces endorphins, which lift our mood and make us feel happier. A strong core also improves posture, correct posture or a straight back held up with strong stomach muscles, will relieve the pressure on our bladder from slouching. OMS recommends exercise for 20-30 minutes around 5 times per week, preferably outdoors. Whatever you're capable of doing, even if it's stretching, try to do it as much as possible. Exercise also increases neuroplasticity, a term used when your brain expands and learns new pathways and ways of doing things.
My favourite exercise is walking. I go for long walks along the beach and up the hill, and when I come back, I’m always more uplifted and feel better. I also enjoy reformer Pilates, planks for core strength, arm weights and lots of stretching to ease muscle tightness, aches and pains.
"WALKING IS MANS BEST FRIEND"
- HIPPOCRATES
- HIPPOCRATES
8. Move the great gift that is - your body
Depression has now been shown as low level brain inflammation which negatively impacts MS, it worsens symptoms and decline. So whatever you do you need to implement a positive thinking strategy to stay healthy and happy. Exercise is fantastic for this but its not always possible so our attitude is really key.
Seeing the best in every situation will help immensely. When I was really sick and wondering if my my disability would ever heal I would look at all the things in my life I was thankful for, even the smallest of things eg. running tap water, a flushing toilet, a roof over my head, a comfortable bed, my vision even if it was flickering. List all of the things your truly grateful for and focus on how incredibly thankful you are for them. One thing I missed so much in hospital was Ben. I remember when I'd gotten home, laying in bed with him and reaching out and feeling his warm hand within arms reach. That alone pretty much moved me to tears after spending 9 weeks in a hospital bed alone and terrified. Interestingly, it's now been proven that by listing 20 things your grateful for every morning you can successfully increase your happiness by 25%. So easy and so beautiful.
Another interesting fact I discovered recently: Our brains seem to process thoughts quite powerfully in terms of visualisation (article here). So, if you visualise success, by say - visualising health, wellness, ability, then your more likely to achieve the success you visualised. So visualise all the good things you want to experience and who knows! you may just manifest them!!
Seeing the best in every situation will help immensely. When I was really sick and wondering if my my disability would ever heal I would look at all the things in my life I was thankful for, even the smallest of things eg. running tap water, a flushing toilet, a roof over my head, a comfortable bed, my vision even if it was flickering. List all of the things your truly grateful for and focus on how incredibly thankful you are for them. One thing I missed so much in hospital was Ben. I remember when I'd gotten home, laying in bed with him and reaching out and feeling his warm hand within arms reach. That alone pretty much moved me to tears after spending 9 weeks in a hospital bed alone and terrified. Interestingly, it's now been proven that by listing 20 things your grateful for every morning you can successfully increase your happiness by 25%. So easy and so beautiful.
Another interesting fact I discovered recently: Our brains seem to process thoughts quite powerfully in terms of visualisation (article here). So, if you visualise success, by say - visualising health, wellness, ability, then your more likely to achieve the success you visualised. So visualise all the good things you want to experience and who knows! you may just manifest them!!
9. Focus on the positives
Being diagnosed with MS can quite quickly have us worrying about our future and missing our past. But you literally need to live in every moment of every day and focus on healing your body as best as you can. Do not worry about the future, as this can lead to anxiety. Don't think about the past as this can lead to depression, and you can't change the past anyway. Just focus on the present and be happy and thankful for the beautiful moments that unfold within your day, and really cherish those moments you experience. A sunny day, a good belly laugh, seeing something beautiful in nature, cuddles with your child or pet, every step you take, every coordinated movement and quick reflex you experience - cherish these moments. If you find this hard to do, meditation definitely helps. So when those tough emotions come up, always remind yourself to come back to THIS moment, the one you're experiencing right now, as it's the only moment that exists. For me, doing this changes my mindset instantly.
10. Take every day as it comes - live in the moment
Start to surround yourself with positive supportive people, friends and family, who love you and want what's best for you.
It may sound harsh but after reading Louise Hays book "You can heal your life" shortly after diagnosis, I did a friend audit. It wasn't extreme but I naturally became aware of the more dysfunctional relationships in my life that weren't serving me anymore. Becoming more conscious of these relationships and setting boundaries has been an invaluable skill to learn, I only wish I'd learned it earlier.
Aside from having supportive friends and family, I found the online platform Instagram to be great support. When I was in that fragile state and confined by disabily, having online support in my hand or lap was invaluable. I could suddenly see so many people from all over the world on a similar journey to me. I realised there are millions out there in the same boat as me, and I felt less alone and much more connected and understood. However Instagram certainly has its negatives so proceed with caution. If it's not serving your mental health then maybe another platform or blog would be better, or simply a physical support group or telegoup.
In terms of public support I know MS Australia offers phone support groups within different categories eg. the newly diagnosed group, under 30s after hours group, health and wellbeing, men’s support, women’s health, women aged 40–64, over 65s, after-hours for working people, mums with MS support, queer and gender diverse, over 65s, taking control, and the working and living with MS group. They put you in touch with someone who you'll relate to, and you can chat about the illness and support each other. I think these categories are fantastic because the old school model of throwing us all together in one big group meetup never felt comfortable for me.
So check in with your local MS foundation and see what they have on offer.
It may sound harsh but after reading Louise Hays book "You can heal your life" shortly after diagnosis, I did a friend audit. It wasn't extreme but I naturally became aware of the more dysfunctional relationships in my life that weren't serving me anymore. Becoming more conscious of these relationships and setting boundaries has been an invaluable skill to learn, I only wish I'd learned it earlier.
Aside from having supportive friends and family, I found the online platform Instagram to be great support. When I was in that fragile state and confined by disabily, having online support in my hand or lap was invaluable. I could suddenly see so many people from all over the world on a similar journey to me. I realised there are millions out there in the same boat as me, and I felt less alone and much more connected and understood. However Instagram certainly has its negatives so proceed with caution. If it's not serving your mental health then maybe another platform or blog would be better, or simply a physical support group or telegoup.
In terms of public support I know MS Australia offers phone support groups within different categories eg. the newly diagnosed group, under 30s after hours group, health and wellbeing, men’s support, women’s health, women aged 40–64, over 65s, after-hours for working people, mums with MS support, queer and gender diverse, over 65s, taking control, and the working and living with MS group. They put you in touch with someone who you'll relate to, and you can chat about the illness and support each other. I think these categories are fantastic because the old school model of throwing us all together in one big group meetup never felt comfortable for me.
So check in with your local MS foundation and see what they have on offer.
11. Build a supportive community around you
Your neurologist will not help you in this area at all, they won't sit and explain everything about MS. I believe it really is up to us to take our health into our own hands and stay educated so we can ask the right questions. I suggest taking the time to read up and watch youtube video's. Go on the OMS website, and listen to interesting podcasts. Educate yourself on everything about MS, healing the body and the brain, as much as you can. Surround yourself with people and information that will benefit you eg. new research, news, study results, people healing, success stories. Stick with the positive searches. Read and follow other people with MS and learn as much as you can.
12. Stay educated and be your own expert
This is extremely important. MS is often referred to as an “invisible illness,” meaning most — if not all symptoms can’t be seen from the outside. Someone with MS can look completely fine while internally struggling with symptoms.
Because of this, I’ve realised that no one understands what it feels like to live in my body more than I do, and no one else feels my specific pain — whether emotional, physical, or both. That’s why self-advocacy is so important. If we don’t speak up for ourselves, we risk suffering unnecessarily when something could have been done to help.
It can be very easy for family, friends, therapists, or even specialists to unintentionally dismiss our concerns because they can’t physically see what we’re experiencing.
Over the last 11 years, there have been times when I've stayed quiet and been misunderstood by friends and family, or I’ve stayed quiet and avoided asking questions, or didn’t feel heard by a specialist — and I suffered because of it. But there have also been moments where I felt really supported by friends and family, and when I’ve spoken up, done my own research, sought a second opinion, and pushed for changes in my care when I knew something wasn’t right. Those moments have led to empowerment, pain relief, and happiness, and I thank myself so much for making changes when I did.
A quote I recite all the time because it that good ..."if you always do what you always did, you'll always get what you've always got" - Henry Ford
Learning to advocate for ourselves is a process. As you begin to better understand your body, what helps, and what doesn’t, confidence naturally grows.
Finding the right neurologist and general practitioner and building a good relationship with them is essential. You need healthcare professionals who make you feel comfortable, heard, and supported.
Before specialist appointments, I keep a running list of symptoms, concerns, and questions in the notes app on my phone. It helps me walk into appointments feeling prepared and leave knowing I haven’t forgotten anything important. We often only get 30 minutes with specialists every few months — sometimes only once a year — so it’s important to make the most of that time and voice any questions or concerns you may have.
Building a healthcare support team around you can also make a huge difference when pain or symptoms arise. There are many therapies we may require eg, osteopath, ophthalmologist, massage therapist, mental health coach, pilates classes, physiotherapist, occupational therapist, weight training, etc etc. When you find the ones you love, take note!
Because of this, I’ve realised that no one understands what it feels like to live in my body more than I do, and no one else feels my specific pain — whether emotional, physical, or both. That’s why self-advocacy is so important. If we don’t speak up for ourselves, we risk suffering unnecessarily when something could have been done to help.
It can be very easy for family, friends, therapists, or even specialists to unintentionally dismiss our concerns because they can’t physically see what we’re experiencing.
Over the last 11 years, there have been times when I've stayed quiet and been misunderstood by friends and family, or I’ve stayed quiet and avoided asking questions, or didn’t feel heard by a specialist — and I suffered because of it. But there have also been moments where I felt really supported by friends and family, and when I’ve spoken up, done my own research, sought a second opinion, and pushed for changes in my care when I knew something wasn’t right. Those moments have led to empowerment, pain relief, and happiness, and I thank myself so much for making changes when I did.
A quote I recite all the time because it that good ..."if you always do what you always did, you'll always get what you've always got" - Henry Ford
Learning to advocate for ourselves is a process. As you begin to better understand your body, what helps, and what doesn’t, confidence naturally grows.
Finding the right neurologist and general practitioner and building a good relationship with them is essential. You need healthcare professionals who make you feel comfortable, heard, and supported.
Before specialist appointments, I keep a running list of symptoms, concerns, and questions in the notes app on my phone. It helps me walk into appointments feeling prepared and leave knowing I haven’t forgotten anything important. We often only get 30 minutes with specialists every few months — sometimes only once a year — so it’s important to make the most of that time and voice any questions or concerns you may have.
Building a healthcare support team around you can also make a huge difference when pain or symptoms arise. There are many therapies we may require eg, osteopath, ophthalmologist, massage therapist, mental health coach, pilates classes, physiotherapist, occupational therapist, weight training, etc etc. When you find the ones you love, take note!
13. Speak-up and be the director of your healthcare
14. When your willing to feel it you can heal it - move through your emotions
I read this a long time ago and it's so true. It's helped in the past when I was grieving and I was able to do it again with my diagnosis.
In order for you to heal you need to be able to feel your emotion and express it. Whenever feelings come up just let them out and cry if you need to. But be mindful not to let this become a habit, a way of feeling sorry for yourself, keep it balanced with other positive emotions.
I say this because a social worker visited me when I'd just gotten home, she told me that I should cry as much as I needed to, so I did. It was lovely advice because it gave me permission to feel my emotions and grieve, however my predominant emotion became sadness and crying and I noticed something - my freezing episodes got worse, and my symptoms got worse. I was freezing more and Ben and I were baffled as we always counted them on our walks together. Thinking about what had changed for me lately I clicked, I was way more emotional, I let it take over. My emotional state was affecting my body. So I then made a conscious effort to look at the positives, to try and stay upbeat and when those uncomfortable emotions came up (usually when I was meditating) to express them. This was much much better for my health and the freezing episodes actually settled back to how they were and continued to be less and less until they eventually disappeared altogether.
I certainly had many difficult emotions to process and I think I cried every day for a year. But afterwards, I pulled myself back into the present moment and looked at what I could control. I told myself I'm not a victim, got up and kept going. Mainly by distracting myself by doing something I loved - like listening to a podcast, uplifting music, meditating, baking, exercising or going to the beach. Soon you'll realise those difficult emotions don't arise anymore or they're not as intense as they used to be. It took me a good 6-8 months to move on from this phase and now I don't feel those emotions anymore. It does get easier.
In order for you to heal you need to be able to feel your emotion and express it. Whenever feelings come up just let them out and cry if you need to. But be mindful not to let this become a habit, a way of feeling sorry for yourself, keep it balanced with other positive emotions.
I say this because a social worker visited me when I'd just gotten home, she told me that I should cry as much as I needed to, so I did. It was lovely advice because it gave me permission to feel my emotions and grieve, however my predominant emotion became sadness and crying and I noticed something - my freezing episodes got worse, and my symptoms got worse. I was freezing more and Ben and I were baffled as we always counted them on our walks together. Thinking about what had changed for me lately I clicked, I was way more emotional, I let it take over. My emotional state was affecting my body. So I then made a conscious effort to look at the positives, to try and stay upbeat and when those uncomfortable emotions came up (usually when I was meditating) to express them. This was much much better for my health and the freezing episodes actually settled back to how they were and continued to be less and less until they eventually disappeared altogether.
I certainly had many difficult emotions to process and I think I cried every day for a year. But afterwards, I pulled myself back into the present moment and looked at what I could control. I told myself I'm not a victim, got up and kept going. Mainly by distracting myself by doing something I loved - like listening to a podcast, uplifting music, meditating, baking, exercising or going to the beach. Soon you'll realise those difficult emotions don't arise anymore or they're not as intense as they used to be. It took me a good 6-8 months to move on from this phase and now I don't feel those emotions anymore. It does get easier.
I recently watched a documentary on bio-electronics which sounds really exciting too. A small battery operated device is implanted into the neck which stimulates the vagus nerve and is showing to alleviate many illnesses. Scientists first need to do a complete nerve map of the body in order to target treatment for specific illnesses. Bio electronics could help lots of illness’s including MS and have the potential to replace medications.
With the rise of social media and technology over the last 10 years, the patient is able to hear and see and have input into medications, possible side effects, advantages, suspected causes/triggers, and possible treatments, whether medical or alternative, more than ever before. Information can spread around the world at lightning speed and literally go "viral", which as a community gives us much more power over our situations.
It's all really exciting as science and research learn more and more about the human body and the immune system every year - connecting more pieces of the puzzle. I feel like it can only get better.
With the rise of social media and technology over the last 10 years, the patient is able to hear and see and have input into medications, possible side effects, advantages, suspected causes/triggers, and possible treatments, whether medical or alternative, more than ever before. Information can spread around the world at lightning speed and literally go "viral", which as a community gives us much more power over our situations.
It's all really exciting as science and research learn more and more about the human body and the immune system every year - connecting more pieces of the puzzle. I feel like it can only get better.
“In a stunning discovery that overturns decades of textbook teaching, researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. That such vessels could have escaped detection when the lymphatic system has been so thoroughly mapped throughout the body is surprising on its own, but the true significance of the discovery lies in the effects it could have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.”
— neurosciencenews.com
— neurosciencenews.com
Research in to MS has made a lot of progress in the last 20 years and continues too. I was diagnosed in 2015 and was bed bound having to be fed, dressed and showered. Then they gave me Tysabri, my neurologist told me after... "I don't know where you would have been 10 years ago before Tysabri", which is a chilling thought for me. This medication stabalised me and allowed me to begin healing. Since then with the great help of the Overcoming MS program I've done a huge amount of healing, and had a child. Something I would have thought impossible back then.
Right now, we have 14 approved disease modifying therapies in Australia and 8 approved in New Zealand. Scientists are also now trialing re-mylination drugs to help the brain heal after relapses, which is a new frontier in MS research. Research in to AHSCT treatment continues and has shown success in trials and in stabalising some people.
I love that we're now taking Epstein barr virus seriously. I remember about 7 years ago reading Anthony Williams book (medical medium) on what spirit says is the cause of MS and so many auto immune conditions- EBV, Epstein Barr Virus. This virus has always had a question mark hanging over it, so I'm delighted that science and research are testing antivirals.
The ongoing research into dietary links and our gut microbiome and the gut brain connection continues to be fascinating, as explained in the Gut Reaction Documentary above (5) as well as the discovery of immune cells in the brain membrane.
Right now, we have 14 approved disease modifying therapies in Australia and 8 approved in New Zealand. Scientists are also now trialing re-mylination drugs to help the brain heal after relapses, which is a new frontier in MS research. Research in to AHSCT treatment continues and has shown success in trials and in stabalising some people.
I love that we're now taking Epstein barr virus seriously. I remember about 7 years ago reading Anthony Williams book (medical medium) on what spirit says is the cause of MS and so many auto immune conditions- EBV, Epstein Barr Virus. This virus has always had a question mark hanging over it, so I'm delighted that science and research are testing antivirals.
The ongoing research into dietary links and our gut microbiome and the gut brain connection continues to be fascinating, as explained in the Gut Reaction Documentary above (5) as well as the discovery of immune cells in the brain membrane.
15. The future is exciting
I hope that's helped!! just remember to stay strong and positive and get lots of sunshine and plant foods, it does get easier. If you can get yourself on OMS please do, it's such a fantastic program. Healing takes time, but it does happen.
Much love & healing energy to you!!
Simonne X
Much love & healing energy to you!!
Simonne X
- FOCUS ON PLANT-BASED FIBRE
- DRINK PLENTY OF PURE FILTERED WATER DAILY
- MOVE THE GREAT GIFT THAT IS - YOUR BODY
- FOCUS ON THE POSITIVES
- TAKE EVERY DAY AS IT COMES - Live in the moment
- BUILD A SUPPORTIVE COMMUNITY AROUND YOU
- STAY EDUCATED & BE YOUR OWN EXPERT
- SPEAK-UP AND BE THE DIRECTOR OF YOUR OWN HEALTHCARE
- MOVE THROUGH YOUR EMOTION
- THE FUTURE IS EXCITING
- MS, Vitamin D and viruses...A MUST SEE!
- The Connection
- Forks over knives
- Your genes are not your fate - Dr Dean Ornish
- Minding your Mitochondria - Dr Terry Wahls
- Gut Reaction Documentary Part 1 & 2
- Hack you health Documentary
- The Connection
- Forks over knives
- Your genes are not your fate - Dr Dean Ornish
- Minding your Mitochondria - Dr Terry Wahls
- Gut Reaction Documentary Part 1 & 2
- Hack you health Documentary
- WATCH THESE FILMS - these are fantastic resources...
- Overcoming Multiple Sclerosis - An evidence-based 7-step recovery program
By Professor George Jelinek
- Recovering from Multiple Sclerosis - Real life stories of hope and inspiration
By Professor Jelinek and Karen Law
- Other interesting reads are "Managing your MS naturally” by Judy Graham &
"The Wahls Protocol” By Dr Terry Wahls
By Professor George Jelinek
- Recovering from Multiple Sclerosis - Real life stories of hope and inspiration
By Professor Jelinek and Karen Law
- Other interesting reads are "Managing your MS naturally” by Judy Graham &
"The Wahls Protocol” By Dr Terry Wahls
- STAY CALM - your going to be just fine
- BE CAREFUL with your google searching
- FOOD & LIFESTYLE CHANGES ARE MEDICINE - read these books as soon as possible...
In a nutshell...
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