please speak with your neurologist or doctor if you think you might be relapsing or suffering a flare

After my last post on The ebbs & flows of healing MS, Iron & B vitamins I thought it’d be great to share with you how I stay positive and motivated during the ebbs.

I know it can be really alarming when you experience a new symptom or your feeling unusually tired, or things in your personal life are taking their toll on your illness. I also know stress is not good for anyone, especially for those of us with MS or our carers, so I have a few things up my sleeve that help me through these situations.

Unfortunately we don’t get told how to manage MS by our doctors or our neurologists so over the years I’ve learnt more and more about keeping MS in perspective and finding what works for me so I can feel and function my best. It takes months and sometimes even years after diagnosis to learn these things, for me it was mainly through trial and error. But reminding myself of these simple things always helps me to stay motivated, positive and happy during the tough times.

Of course if you think your ever experiencing a relapse, a symptom flare or your just not feeling right please talk with your neurologist or your doctor first, and get the necessary tests done, I certainly do. 

So, the first and probably the hardest one I’ve had to come to terms with over the years…

• symptoms naturally fluctuate, that doesn’t mean your not healing in the long run

Healing isn’t linear like we so hope it to be, if only it was that easy!

I’ve learnt over the years that symptoms naturally fluctuate with MS whether your healing on OMS or not, and if your on OMS it doesn’t mean your not getting better in the long run. I know this because I’ve been doing OMS for the last 2 and a half years and I’ve had my fair share of ups and downs (talked about in my last post The ebbs & flows of healing MS, Iron & B vitamins) but I’m still improving. 

Currently I work 3-4 days a week, preparing all our meals, travelling, socialising, exercising regularly, doing infrared saunas, laying on the beach in the hot sun and swimming in the ocean like I use to before diagnosis. Things I only dreamed of doing during the first few years of diagnosis.

Some days are definitely easier than others due to any number of things. I find my hormones, poor sleep, stress, social or work pressures and the quality of my diet all contribute to my symptoms fluctuating, my energy levels and how I feel. But sometimes I feel like I’m doing it all perfect and I still get fluctuations. It takes between 3 and 5 years to see recovery on OMS so I just remind myself that it’s not a race, it’s a journey and every time I have a setback I always learn how to better manage things. 

• drop into gratitude

Gratitude always helps me put things in perspective, it’s such a game changer.

I like to list 20 things I’m grateful for most days, everyday if I remember. Even things like having a flushable toilet, running water, a roof over my head, healthy food in my fridge and clothes on my back. It sounds like a lot of things to list BUT the beauty of this is you realise how incredibly lucky you actually are because you have so much to be grateful for. I’ve completely flipped my perspective on cleaning my house by being grateful. After I list all the things I’m grateful for I focus on how grateful I am for these things and think about what life would be like without them. I also know how bad things have been with my body during a severe flare so I’m always grateful for the ability and good health I currently have. A healthy body (albeit healing) is a beautiful gift. 

• we’re not alone

Over the course of my life I’ve learnt that everyone is going through something in their lives and some people might be fighting battles we know nothing about.

I have friends who’ve overcome and sadly passed away from cancer and friends with other autoimmune conditions. I have a beautiful family friend with a rare movement disorder and I know people with weight problems, depression and anxiety or difficult family situations. I saw many people in rehab with amputations and other complicated life changing illnesses. This doesn’t take away from the seriousness of what we have to deal with at all, but it does help to put things in perspective for me. It reminds me that I’m not alone in this world of dealing with health problems and adversity. My close friend told me this quote after my diagnosis which has stuck with me “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back”.

• Comparison really is the thief of joy

Comparisonitus will eat you up! so nip it in the bud now. Just don’t compare yourself to your work colleagues, your friends without MS or even the ones with MS including me. All of us have a different body, different symptoms, different strengths and weaknesses and our own healing journeys to work on. I’ve fallen into the comparison trap many times especially during the earlier days of diagnosis and I quickly learnt it didn’t serve me well. I like to remind myself to trust in the flow of my own life because we are all so different and it’d be such a boring world if we were all the same.

• Symptoms may not be related to ms, tune in with yourself

It can be so easy to blame all your problems on MS but keep an open mind about where your pain, sickness or emotions are coming from.

It’s also inevitable you’ll get sick with something unrelated to MS like the flu or a tummy bug at some time in your life time. I’ve been sick many times since diagnosis and most of those times I worried it was a relapse for the first few days and it never was. If I’m worried I call my neurologist first but I’ve found that knowing my triggers really helps so I can rule things out. Ben and I will talk things out together by asking a few simple questions like – what have I eaten lately that could be making me feel sick? has it been really hot today? did I sleep well last night? have I been busy or stressed lately?  have I drunken enough water today? have I eaten enough food? have I taken my iron and B12 supplements? have my usual symptoms flared or does it feel different? and so on. Doing this and talking to my neurologist always helps me get to the bottom of things.

• give yourself space & quality self love

Give yourself space to heal and meditate and think things through. I always meditate more often and sign out of my social calendar and social media for a little bit, I slow right down and literally just rest. I might read my book, sleep, journal, use essential oils, do yoga, stretching or book a massage. This is really important and healing because it stimulates the parasympathetic nervous system also known as your “rest & digest” system, to help us recharge and heal.

“The parasympathetic system conserves energy as it slows the heart rate, increases intestinal and gland activity, and relaxes sphincter muscles in the gastrointestinal tract.” – sciencedaily.com

Always remember to put your health first during these times when your body needs your support. Talking with your partner or carer and explaining how your feeling really helps as well because we tend to look so well most of the time, they can struggle to understand whats going on inside. Maybe they can prepare their own dinner and do some house-work to help you out over the next few days.

• meditate more often

Because of the worry and uneasiness of getting sick, suffering a symptom flare or when I feel I’ve over-done it I always meditate a lot more to help calm myself down and it really helps. During my recent flare from low iron and B12 I meditated about 6 or 7 times in one day which made me feel so much more relaxed and happier. If your struggling with meditating I recently wrote a post My tips for Meditation which might help you. I love meditating so much and see it as my special time to solely focus on healing.

• get consistent early nights

My symptoms are almost definitely worse when I’ve had a bad sleep or a late night so I make a conscious effort to get lots of rest and early nights. In my post 16 Ways I encourage CALM Part 2 I share some of my wind-down ideas I use to help me relax and get a restful nights sleep + these blue light blocking glasses I now use when I’m on the computer and my phone to help me sleep better too. Do your absolute best to go to bed between 8-10pm and to sleep no later than 11pm because it really will make you feel better. I usually go to bed at 9.30pm then I meditate for at least 30 minutes which takes me off into a blissful restful sleep. Sleep is when the body does a lot of healing, detoxification and repair of the brain and the entire system.

“There is a significant association between poor sleep and immune function: Research has shown that poor sleep affects immune function (a 50% decrease in killer cell activity) which results in more frequent infections in the short-term and more chronic illness in the long-term.” – www.sleepforhealth.net.au

• Recite positive healing affirmations

I’m a big believer in the mind body connection and positive self belief for healing. A few weeks ago I shared 2 of my favourites podcasts for healing which are fantastic on this topic. I highly recommend everyone with MS taking the time to listen to those 2 podcasts. I usually sit down at breakfast with Louise Hay’s book You can heal your life and read through her affirmations so I can carry them with me throughout the day. I repeat things like “Healing energy constantly flows through every joint, organ and cell of my body every second of every day”, or they can be as simple as “I am happy, healthy and vital” or “I’m the one in the drivers seat” and “this too shall pass”. I also love to thank my body for being there for me just by saying “I love you – thank you legs, thank you eyes, thank you arms, etc” to myself. After experiencing so much disability I have a whole new level of appreciation for my function and ability. Affirmations are also really powerful because they are in the now “I am healing” and the universe will give back what you put out, it supports you in whatever you choose to believe about yourself. Plus it sends all sorts of natural healing chemicals throughout your body. The documentaries Heal and The Connection illustrate this beautifully.

• catchup with a good friend

Sitting at home on your own and worrying about things can get really boring and make you feel even worse. I find getting out of my apartment, connecting socially and getting things off my chest really healing, but only if you feel well enough. Confiding in a close friend helps to ease some of the worry which is always a good thing. Most of the time my friends are going through something similar and we laugh at how crazy life can be.

• have a LAUGH

When I was healing after diagnosis I noticed how laughter and comedy instantly changed up my state, it eased my worries and took my mind off the seriousness of my situation. I began to really value the funny people in my life on a whole different level. I realised that those naturally gifted with a great sense of humor are such healing people to be around. I later found out that laughing eases pain and anxiety and the body stays in a relaxed state for up to 45 minutes after a good belly laugh, not to mention enhancing relationships and connection with people. I also recently learnt from seeing Dr Terry Wahls that laughter is great for toning our Vagus nerve which is something those of us with MS really want to do. I found this fantastic article here all about the vagus nerve and vagus nerve stimulation. So give yourself permission to surround yourself with positive, happy, funny people and watch all the funny movies and comedy shows you want. 

• gentle Exercise 

A gentle walk in the sun and some fresh air can make the world of difference. Being inside can be very task orientated so tends to be more draining at times whereas being outside gives you space to just be. I find myself focusing on external things when I’m outside mainly nature and the beauty around me or my function and ability. The fact I’m walking or running with the sun on my skin is always a great feeling.

• set boundaries for yourself & don’t be afraid to say no

Over the years I’ve learnt that the only person that knows how your feeling is you and the only person that has to deal with the repercussions of over doing it is YOU. So don’t be afraid to simply say no to things if your exhausted or need some recharge time. A great thing to remind yourself is every time you say “yes” to someone your taking time away from you, and every time you say “no” your allowing space for yourself. Next time someone asks something of you instead of confirming on the spot, try pulling back and taking time to think about what saying “yes” would mean for your health and happiness, then think about what saying “no thank you” would mean as well. 

• DIET & LIFESTYLE changes HEAL THE BODY so keep going

Remind yourself your on the right track and KEEP GOING. I feel like every year more and more evidence is coming through to support the fact that diet and lifestyle changes like whats prescribed on OMS or The Wahls Protocol heal the body. Every time I hear new research and data it helps me to keep the faith and re-affirms I’m on the right track. We have a lot more control over our situations then we’re led to believe by our doctors.  Just watching the film HEAL last year was so powerful, or reading about The Coimbra Protocol (high dose vitamin D therapy) in Brazil, or the recent blog post on the OMS website with scientific evidence showing a clear correlation between those that ate more fruits and vegetables having better outcomes, link here At last! High level evidence for diet in preventing MS disability. I’m also looking forward to the release of Living Proof Documentary by Matt Embry on his recovery from MS with diet and lifestyle. Plus I see people on social media all the time who’ve healed their autoimmune diseases or health problems with plant-based and paleo type diets like what’s prescribed on OMS or The Wahls Protocol and are living full and happy lives – @texasfruitarian @paleobosslady @rawandfree @earthyandy @drterrywahls @embry.matt to name a few.

In a nutshell…

• symptoms naturally fluctuate with MS, but that doesn’t mean your not healing in the long run

• drop into gratitude

• we’re not alone

• Comparison really is the thief of joy

• Symptoms may not be related to ms, tune in with yourself

• give yourself space & quality self love

• meditate more often

• get consistent early nights

• Recite positive healing affirmations all day

• catchup with a good friend

• have a LAUGH

• gentle Exercise 

• set boundaries for yourself & don’t be afraid to say no

• DIET & LIFESTYLE changes HEAL THE BODY so keep going

Sorry that was a long post but I had to get it all out! I hope you’ve stayed with me : )

If you’ve been finding it hard or feeling alone, trust me your not alone! we’re all in this together, the ebbs and flows are real for all of us.

Learning to manage things gets easier over time and the more work you put in to healing the more you’ll learn about yourself and what works for you. Sometimes just making a few simple changes to the way you go about your day like including some gratitude, some affirmations or intentions for the day, good food or an early night will make you feel 100 times better.

Also don’t beat yourself up if your doing it all right and your still getting fluctuations, I’ve found this to be normal. I’ve learnt that having my own back and supporting my body through the ups and downs to be so much more beneficial to my health than being hard on myself. Trust in the flow of your life and trust in your bodies ability to heal and give it time. I certainly didn’t get to this point in my healing overnight, healing MS is a long, slow and gradual process unfortunately, and besides we are trying to heal the most complex part of the body after all, our brain. So always remember to treat yourself with love and kindness.

Stay strong!!

Much love!

Simonne x