My advice to someone newly diagnosed with MS
Diagnosis is a life changing moment. For me it flipped my whole world upside down just when I thought I had it all sorted. It took months and months of hard work everyday to heal my body along with lots of 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 learnt a lot along the way. In this post I've summarised the critical points that have helped me immensely with my recovery in regards to my initial episode and diagnosis, so that it can hopefully benefit you or someone you love.
1. Upon diagnosis...
If you are anything like me I immediately had a million questions going round in my mind. What is MS? what will happen to me? will I live a normal life again? there is so much unknown. Then all the emotions kick in and you can'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 but - Your emotional state impacts your whole physiology. The mind and the body are connected and they have a beautiful relationship with each other when everything's in harmony. This seems so obvious to me now but it wasn't back then. Your thoughts and emotional state impact your physical state. Negativity brings down your immune system. An unhealthy, stressed and worried mind will make for a tense body pumping stress hormone and worsening your state and therefore triggering a worsening in symptoms and it can even trigger relapses. When I was going through mine 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. I know it's an incredibly tough time and grief is a natural part of the process and expressing it is really important. But constant worry and stress when your already sick and need to heal will not help your body at all. Here's what I wish i'd done in those weeks I was stuck in hospital.
2. STAY CALM - there is so much hope
Try your best to stay as calm as possible - everything will be ok and you will get better - the mind is a powerful thing, believe you can and you will. If your eyes are good try writing out your thoughts in a diary and listing all the positives in your life and really focus on them and how grateful and blessed you are for them. Every morning you wake up recite 20 things your grateful for even throughout the day. Start daily meditations to help you re-centre, calm down and get in the right frame of mind for healing. I use an app now called "Simply Being" which I love! i'd be a different person without it. If your speech is good, talk 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 my boyfriend 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 their to help me all the way. Just knowing that gave me so much strength to keep fighting. Other great things you can do to stay happy is listen to uplifting music - make an empowering playlist, there were so many great empowering songs out there and they really lift the spirits. Exercise if you're able to and get some natural endorphins going. If not try and get outside in the sunshine and get some fresh air and vitamin D. Vitamin D3 is incredible for the body, I have a video coming up in this post on just how amazing it is. Watch funny movies, comedy shows, listen to funny podcasts. My boyfriend got me Seinfeld and Little Britain box sets to watch in hospital and they took my mind off my situation instantly. Laugh as much as you can. Laughing eases pain, stress and anxiety, try and laugh through the pain if you can. Then do the following when your able to read and digest information.
3. Be VERY VERY CAREFUL with your google searching
You might want to start researching and finding out all about MS online like I did, it was the first thing I turned to when I was diagnosed. But when I google searched in the first few weeks of diagnosis I found it VERY confronting because most, if not all the information I was coming across had no regard for how nutrition and lifestyle changes can heal your body. If your in a very vulnerable state then try not to google at all until your emotionally strong enough, it's not worth the toll it will take on you and your body, which will lead to more stress and worry. Once you've read the following books and understand the lifestyle and nutritional links you can google more wisely. Also, the internet has a tendency to give you extremes because these get the most hits because they're the most interesting. Everyone with MS is completely different. Instead go to your national MS society website like www.msaustralia.org.au if your in Australia and register - they'll send you a starter 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 that you can trust.
4. FOOD IS MEDICINE - read these INCREDIBLE books as soon as possible
"Overcoming Multiple Sclerosis - The evidence based 7 step recovery program"
- By Professor George Jelinek
"Recovering from MS - Real life stories of hope & inspiration"
- By Professor George Jelinek & Karen Law
These books are absolute game-changers!! 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 had so much disability when I started and i'm almost back to normal living my life to its fullest as best I can. I can't recommend this program enough, it's been an absolute god send for me. If you've read my story you'll understand just how far I've come.
The reason it's so beneficial to overhaul your diet is because the drugs 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 will, which will significantly impact your quality of life. Plus diet and lifestyle changes have the added bonus of slowing relapse rates and disease progression also. It's a very holistic approach.
I have all but a few symptoms left after nearly a year on OMS. This time last year I had just learnt to walk again, I went from wheelchair to walk-belt to walking stick. I was freezing every 30 seconds for 20 seconds in duration whilst slurring, blurred eyes and losing 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, I couldn't focus on anything in downward gaze at all. Today i'm back working part-time, socialising, travelling, exercising daily. My fatigue is always improving and I no longer need big rests in the day. I'm sleeping 7-8 hrs and able to jump out of bed early. I have minimal nystagmus - my eyes have calmed a lot and continue to heal. I don't suffer from slurring or freezing episodes anymore and my balance is nearly back to normal. OMS works on continually healing you so that you eventually see a remission.
OMS is all backed by research and was created by Professor George Jelinek who has MS himself. He's been relapse free since diagnosis around 16 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 fantastic.
I highly recommend OMS because I've seen what it's done to my body. But there's also The Wahls Protocol which is based on paleo principles and includes meat. I follow a lady on instagram who has successfully reversed all her symptoms through The Wahls Protocol. You'll need to figure out what's right for you and what you can stick with long-term. With these dietary changes it doesn't have to be cold turkey initially although that would be amazing, but it did take me a few months to get everything perfect. It was definitely a work in progress for the first few months as I tried to find the right foods and learn what I could eat in restaurants (we generally eat Japanese whenever we go out for dinner - it's always the safest, being mainly fish and rice). Thats where the OMS website overcomingms.org is such a fantastic resource. There's a forum where you can ask any questions you might have about the program and read other OMS'ers posts, there is so much information on the forum it really helps with the whole journey not just the diet.
5. WATCH THESE FILMS - these are fantastic resources
I found these films in my research days and they really helped me put the pieces of the puzzle together. They were so fascinating to me and helped me understand the illness so much. I've realised that by gaining some in-depth knowledge it further compelled me to galvanise the changes i'd made. It made me understand why nutrition, stress, meditation and mind over matter are so important for healing my body.
Understand the Powers of Vitamin D3
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. I found this clip on youtube during my early research 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. This demonstrates why you need every organ in your body as healthy as possible in order to get proper vitamin D into your system.
My personal favourite. It's such a beautiful film on the mind body connection and how it effects illness. Many medical doctors who are well established and highly respected in their field talk about this powerful connection that can literally help heal your body. Dr Jelinek the creator of OMS features in this film also.
Forks over Knives
One of the first films I watched on the diet vs illness topic and it's fantastic. This film is a must watch for understanding the meat and dairy industry and how going plant-based is so healing to our bodies. Plus, how it can treat and alleviate so many chronic illnesses.
Your genes are not your fate - Dr Dean Ornish
Dr Dean Ornish is awesome! In this short Ted talk he talks about our genes in terms of our genetic predispositions to certain illnesses and how we can positively change our gene expression through diet and lifestyle. This will empower you.
Minding your mitocondria - Dr Terry Wahls
Dr Terry Wahls healed her secondary progressive MS through her own research into nutrition and what the brain and the body need to heal. She's pretty incredible, she really makes you understand just how important it is to get an array of different fruits and vegetables in your diet daily and why. Variety is key for brain health!
6. Focus on a variety of plant-based FIBRE
This has been one of the most interesting documentaries I've seen lately, it's all about our microbiome and how it affects illness. An absolute MUST WATCH in regards to MS as it offers an insight into exactly why eating healthy whole, fibre rich, plant based foods is so beneficial to optimal health therefore MS. It instantly made me focus on good quality plant-based fibre.
Gut reaction - Part 1
Gut Reaction - Part 2
Fibre also aids in detoxification and regular elimination. Regular bowel elimination is essential, especially for people with MS. Constipation is toxic to our bodies, as you risk re-absorbing toxins that your body is trying to eliminate. These toxins and by-products include pesticides from foods we've eaten, excess hormone, preservatives, toxins from cleaning products and self care products and fumes or environmental toxins we've inhaled. Fibre is fantastic as it absorbs water and toxins, softens the stool, and effectively flushes them out of your system.
Please note that when increasing fibre you MUST also increase your fluid intake
7. drink plenty of pure filtered water
When I was doing a lot of research in the early days of my illness I kept coming across how important it is to drink litres of fresh, clean, filtered water daily. Fresh, clean, filtered water is important for your body as it helps to flush the body of toxins, excess hormone, pollutants and by-products as mentioned previously. It also aids fibre in doing its job and keeping you regular. The body is made up of 60% water. Each organ in our bodies is made up of a different percentage of water - the brain and the heart are 73% water even our bones are 31% water.
Water is essential in helping our bodies feel and function at their best. I've noticed dehydration worsens my symptoms including my nystagmus, energy levels, concentration, bladder and circulation. I've learnt 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 to 500ml, then another 1L throughout the day, plus lots of cups of herbal tea. My smoothie bowls and smoothies are also really hydrating.
8. MOVE the great gift that is - your BODY
Exercise has many facets that help with MS symptoms. It improves your physical condition - which will keep you strong and mobile. When I was in rehabilitation and learning to walk again, the physios told me that a big reason why stroke patients don't walk again is because they have no core strength, they become de-conditioned through lack of movement and they literally can't walk again. This made me realise how important it is to keep my core conditioned and strong. Exercise also improves circulation thus improving blood flow and oxygen to the brain, and it also produces endorphins which will lift your mood. A strong core also improves posture, correct posture or a straight back held up with strong stomach muscles will relieve the pressure on your bladder from slouching. OMS recommends exercise 20-30 minutes around 5 times per week preferably outdoors. Whatever your capable of doing even if it's stretching then 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 to do things.
9. FOCUS ON THE POSITIVES
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 with MS. Exercise is fantastic for this as it produces natural endorphins (happy hormones) that will elevate your mood. But your attitude is really key.
Seeing the best in every situation will help immensely. When I was really sick and wondering if my freezing episodes would ever stop. I would look at all the things in my life I was thankful for, even the smallest of things. List all of these things and focus on how incredibly thankful you are for them. One thing I missed so much in hospital was my boyfriend. 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%.
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.
10. TAKE EVERY DAY AS IT COMES - live in the moment
Being diagnosed with MS can quite quickly have you worrying about your future and missing your past. But you literally need to live in every moment of everyday and focus on healing your body as best 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 cherishing those moments you experience. A sunny day, laughter with a friend, seeing something beautiful in nature, every step you take, every co-ordinated movement and quick reflex you experience - cherish these moments. If you find this hard to do, meditation definitely helps. Always remind yourself to bring yourself back to this moment, because it's the only moment that really exists.
11. BUILD A SUPPORTIVE COMMUNITY AROUND YOU
Start to surround yourself with positive supportive people, friends and family, who love you and want what's best for you. Instagram has been great for this. The reason I love it so much is that you meet so many people from all over the world on a similar journey to you. You can share your experiences, learn from theirs, discuss research, drugs, nutrition, symptoms, ask for advice and inspire each other. You realise there are millions out there in the same boat as you and you don't feel so alone and misunderstood. I think social media is the modern day MS support group. You can also remain anonymous if you want to. There are so many socials to work with - instagram, snapchat, facebook or blog, even email and phone calls or all of them.
I know MS Australia offers phone support buddies. They put you in touch with someone who you will relate to and you can chat about the illness and support each other.
12. STAY EDUCATED & BE YOUR OWN EXPERT
Read, read, read. Watch youtube. Go on the OMS website. Educate yourself on everything about the illness 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 about the illness. Your neurologist will not help you in this area at all. My neurologist is fantastic but he won't explain everything about the illness. It really is up to you to take your health into your own hands and stay educated so you can ask the right questions.
13. WHEN YOUR WILLING TO FEEL IT YOU CAN HEAL IT - move through your emotion
I read this a long time ago and it's very very true. It's helped in the past when I was grieving and I was able to implement it again with MS. 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, cry it out. 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, my symptoms actually got worse. I was freezing more and my boyfriend 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. 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 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. Soon you'll realise those emotions don't arise anymore or they're not as intense as they use 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.
14. THE FUTURE IS BRIGHT
MS researchers have made soo much progress in the last decade. My specialist always says to me "I don't know where you would have been 10 years ago before Tysabri". Right now we have 10 approved disease modifying therapies in Australia, and some of these like Tysabri are helping people with highly aggressive MS live normal lives and have children. Scientists are also now trialing re-mylination drugs to help the brain heal after relapses, this is a new frontier in MS research. There's also stem cell AHSCT treatment which has shown huge success in trials in some people, people walking again after being wheelchair bound. Another amazing treatment which has recently been approved is Lemtrada as it works on rebooting your immune system. I recently wrote a post talking about this drug here if your interested.
On an alternative front the research into the gut microbiome and the gut brain connection is so interesting and exciting as explained in the Gut Reaction Documentary above (point 5). It really makes so much sense in terms of healing illness with diet and lifestyle. It may just be the answer!
Another really exciting leap forward I heard about lately is the discovery of immune cells in the brain membrane.
"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."
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 many many illness including MS and have the potential to replace medications.
It's really exciting as scientists 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.
So...all of that in a nutshell...
STAY CALM - there is so much hope!
BE VERY VERY CAREFUL WITH YOUR GOODLE SEARCHING
FOOD IS MEDICINE - read these books as soon as possible!
- 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"
WATCH THESE FILMS - these are fantastic resources
- 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 Wahl
Gut Reaction Documentary
FOCUS ON plant-based FIBRE
drink plenty of pure filtered water
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
MOVE THROUGH YOUR EMOTION
THE FUTURE IS BRIGHT
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!!