4 Years on Overcoming MS - from diagnosis to disability to healing
Where do I stand with my healing at nearly 4 years on OMS? …well it’s quite a stark contrast from where I was this time 4 years ago and it feels pretty amazing!
To think about where I was this time 4 years ago sends shivers down my spine. I was laying in a hospital bed in the neurological wing of St Vincents Hospital having just been told that I "most likely had MS". I had symptoms raging through my body and I was about to hit my absolute rock bottom.
At my worst my eyes were a constant blur from nystagmus, along with blurred and double vision. My right eye turned inwards due to an inflamed lesion in the vision area of my brain. I was on thickened fluids and mashed food as I’d lost the strength in my whole body including my throat. I was choking on the smallest sips of water, my water had to be thickened to the consistency of glue.
I had no co-ordination in my limbs at all so I had to be fed, showered and taken to the toilet, dressed and even pulled up my bed when I slipped down because I didn't have the strength to do it myself.
I’d also lost the ability to speak and control over my emotions. My words and my mind were a complete blur. I would laugh at inappropriate times and I just couldn't hold back the tears. I had full body muscle spasms that affected my ability to breath and would start without warning, they were by far the most sinister symptom I’ve experienced with this illness.
My mind was a fog of memory problems and cognitive dysfunction. I was constantly nauseas and heavily fatigued. All I wanted to do was sleep for days on end, even weeks. I felt like I was horribly drunk with the worst hangover of my life, both at the same time. I was trapped inside my own malfunctioning body and struggling to come to terms with the fact that only weeks prior I was going about my daily life like a normal 31 year old, with a full time job trying to climb the career ladder in the fashion industry.
To call it a surreal experience would be an understatement. I look back now and can’t quite believe I went through it. I remember thinking to myself at my worst. Wow!! so this is what it feels like to have Multiple Sclerosis, I had no idea it was this crazy, this SUCKS!!.
The questions started going round and around in my mind for weeks on end while I lay there unable to do much at all. Why can't the doctors help me?? this is so cruel! does everyone with MS go through this? will I go through this every time I relapse? what am I going to do with my life now?? will I get better? if so, will I eventually become disabled? Will I need a wheelchair? how is this going to affect my life? is Ben going to leave me now that I have this incurable illness? I thought my life was completely falling apart. The fear, the unknown, it tortured my mind for weeks.
At the time it felt like the toughest blow. The future I had imagined, I thought it had been completely torn apart. I was now dealing with disability aids like wheelchairs, walks belts and eventually a walking stick and prism glasses. I trialled eye patches, used every handrail in sight, bought a shower seat and had a handrail installed in our shower. Days were filled with physio sessions, neurological testing by doctors, speech therapists, counsellors, and sympathetic junior doctors trying to console me but not many concrete answers as to why this had happened. Just a lot of sympathetic looks as if to say “Simonne, you have to live with this now, there is no cure, this is your life”. Even nurses consoling me were shocked - your my age they would say, how did this happen? …I have no idea I replied, one day I was fine, the next I wasn’t.
It took me months to process it all when I got home from hospital. Why me?? what did I do to deserve this?? what the hell am I meant to do now??? and sometimes I did think what is the point of carrying on. If all I have to look forward to is declining disability, how am I meant to look forward to that. I really didn’t know if I’d feel happiness again.
In those initial months I went through every emotion - anger, sadness, hopelessness, frustration, depression, anxiety and blame.
Then one day researching on my laptop about 6 weeks after leaving hospital I stumbled across The Overcoming MS website and literally within minutes everything in my mind changed. I felt an immense sense of hope sweep over me and for the first time in months I genuinely smiled. To be given the prospect of taking control of my own illness was immense and with diet and lifestyle changes I thought to myself - I’ve totally got this!. I ordered the book and finished it within a week, I couldn’t put it down. I cleared out my whole pantry almost instantly and ordered the biggest organic grocery shop of my life, and I've been on the program ever since.
Healing on OMS
I started OMS roughly around August 2015 and I’ve been amazed at how my body has healed and responded over that time.
My healing journey to this point certainly hasn't been a smooth and easy road. There have been many ups and downs, twists and turns and days wondering if I'd ever heal or live a normal life again. But there have also been many breakthroughs and moments of excitement when I’ve realised a symptom has disappeared.
It took me months to settle into the program and feel confident making OMS friendly meals, eating out, and having dinner with friends and family. I remember when I first started the program I thought margarine was still ok, of all things!. Then one morning I saw someone on the OMS forum refer to it as bicycle grease. Even though I was a healthy person pre diagnosis I'd had years of conditioning around fats and oils that had to be broken down.
I also knew in order to succeed on the program and heal my disability I had to get really conscious about everything, not just what I was eating.
A friend of mine recommended Louise Hays book You Can Heal Your Life which has been invaluable. This book has taught me how to have my own back and be my own best friend. It’s also thought me about the power of positivity and manifestation for healing and attracting what you want in life. I soon learnt that we can be eating all the right things but if we’re thinking negatively or creating toxic emotions that can be just as destructive for our health.
I also had a burning desire to prove my doctors wrong (although they have no idea) which by the way I am!. Since my diagnosis all the lesions in my brain have healed, plus I havn't had any new lesions or disease activity in that time either. Recently on my latest MRI my neurologist turned and said to me "it looks like your brain has healed 100% and I think you’ll continue to get better" which was the best news to hear, especially since I was told "plaques don't heal".
I thought it'd be helpful for you to see what I experienced during my diagnosis and let you know what’s healed and what I'm still working on.
In comparison to when I hit rock bottom during diagnosis I've written in bold next to each symptom where I'm at today.
Rock bottom vs now
Loss of mobility – couldn’t walk, couldn’t adjust myself at all not even to lie on my side, at my worst I couldn’t even adjust my own head. My mobility is fully restored now, I can move freely without restriction and I can talk clearly.
Nystagmus - (flickering eye movements), mine were vertical. I couldn't look up at anyone or maintain eye contact for months. Healed so much so that some days I completely forget about it. However nystagmus is still present but my eyes are continuously improving and have done since starting OMS.
Double vision. I had prism glasses for about a year after diagnosis then the double vision corrected. If I’m tired it comes back a little bit or if I’m looking on certain angles. I was told eyes can get lazy so forcing them to work together is key.
Fuzzy blurred vision. Healed
Muscle weakness in almost every part of my body. Healed, I have really good strength now, I can lift weights and run on the treadmill. I also carry heavy camping gear up and down 3 flights of stairs whenever we go camping, and this summer Ben took me out Surfing and I stood up!
A tight band around my middle. Healed
Loss of speech. Healed, my speech is fully restored
Slurred speech. Healed
Loss of depth perception. Healed
Burning sensations on my face. I feel a slight cooling sensation on my face sometimes but not like the burning I use to experience.
Episodic freezing where I couldn’t walk, slur speech, loose arm and leg co-ordination and nystagmus worsened for 20 seconds at a time, happening at their worst 30 seconds apart ( I suffered from these for about 6-8 months after leaving hospital but they have healed now). These were devastating and kept me mostly house bound for about 6-8 months but they’ve fully healed now.
Stiffness and heaviness in my body, a feeling as if I was being pushed into the ground and my legs were full of lead. This has lifted so much that I can break into a run easily now or run down the stairs. I'm feeling lighter in my body all the time. For years I had no explosive movement what-so-ever but this has come back little by little, I still notice this improving all the time.
Spasticity or muscle spasms upon waking. Healed. My body stretches itself out when I yawn or if I’m tired but it’s more natural, not the intense stretching pain I use to get.
Tingling in my lower half. Healed
Partial numbness in my forearms and hands + my lower body from my waist down. Healed. I have the slightest numbness in my hands that I don’t notice unless I think about it.
Memory problems. My short term memory was the most affected during my diagnosis for about the first year or 2 but this has healed a lot.
Loss of control over emotion. Healed
Dizziness. This time last year I couldn't dip my head as I’d experience head spins and feel nauseas which is a big reason I couldn't do yoga for so long but I did some yoga last weekend and felt fine. It's not 100% healed but it's getting better.
Heat intolerance. Healed - I do infrared saunas now, I also spent the last 2 summers laying on the beach in the hot sun and swimming in the ocean like I use to before diagnosis.
Fatigue. One of the first things to improve on OMS and has continued to improve every year.
Full body muscle spasms. Healed.
MS hug – tight chest, hard to breath. Healed
Itching all over my legs. Healed
Balance issues after learning to walk again. Healed a lot. I spent years crashing into walls and doorways but now it’s just a slight off balance feeling and some days are better than others depending on how I’ve slept. I’ve noticed this get better and better over the years. I’m also able to swim in the sea confidently and withstand the waves.
Headaches. These days I tend to get tension headaches, this is more due to tight neck and shoulder muscles. I see an Osteopath regularly for this.
Sensory issues - stinging sensations, prickling sensations and a feeling as if a small insect is crawling over my feet. I havn't noticed this for months but recently it come back with my Mercury detox.
After I’d accumulated the disabilities above I was put on a medication called Tysabri to help tame the aggressive nature of my MS, and all I can say is THANK GOODNESS for Tysabri. Tysabri works by attaching to immune cells and holding them back from passing through the blood brain barrier and getting into the brain. Tysabri finally stabilised me which weeks of steroids struggled to do. A few weeks after starting Tysabri I was finally able to begin rehabilitation. After each infusion for about the first 2 years I would always feel a tiny bit stronger.
Unfortunately though, Tysabri doesn’t heal damage done by an MS flare so we can instantly regain everything that was lost, if only it was that easy! I would have paid my right arm for something like that back then.
Unfortunately there’s no drug on the market to date that heals the damage done by MS relapses. Most of you will know, but for those not familiar with MS medications, they’re each designed to reduce relapse rates and disease progression (each by a different percentage). So ones recovery from a relapse is very individual and there’s no guarantee of a full recovery. After a relapse we work our butts off to heal the damage so we can recover with as little disability as possible, and we just hope and pray for the best.
Recovering from that episode was THE hardest thing I have ever done in my life. It required a massive amount of faith, hope, determination and support and it tested me like nothing ever has.
my health these days
These days I’m a completely different person. I have minimal Nystagmus which I notice improving all the time. It’s mainly around the outer edges of my vision - looking down, looking up and side to side. Some days it’s worse than others depending if I’m stressed or how I’ve slept. My eyes have definitely been the slowest to heel out of everything. It’s been a real game of patience, hard work, waiting and hoping.
A recent breakthrough I had was after my amalgams were removed last year (I had 5) and beginning my mercury detox I’ve noticed my eyes are calmer and clearer like someone has turned up the sharpness in my vision. They’re also much clearer looking into the distance as well.
In my experience Nystagmus is worse when I’m tired or stressed or when I dip my head. So meditating a lot and getting plenty of sleep and down time is my best approach to keeping it under control. But mostly I don’t notice it that much and it doesn’t hold me back from doing anything.
I have the slightest residual numbness in my hands which I can hardly feel and I honestly don’t notice that either, it’s also improving every year. I still experience fatigue but again, nothing on what it use to be. When I was at my sickest in hospital I felt like I could’ve slept a month solid, it was the most over-whelming foggy, my heads in a cloud, unrelenting fatigue. During the first year it was tough to even get myself out of bed and have a shower, I was sleeping 12-14 solid hours a night. I remember one day I woke up at 1pm. The 2nd year it’d improved to the point I was able to do morning activity like the gym or walks (while still feeling some level of fatigue) with a rest in the afternoon and full rest days in between. Then slowly I got to a point of having days without afternoon rests and eventually going back to work.
These days I call my fatigue functioning exhaustion as I have to force myself to do nothing to get the rest I need so I don’t feel worse. I’ve found over the years MS fatigue takes constant management and is probably my biggest challenge. There’s a fine balance between being productive, working and getting things done, but also getting enough rest so you can function the next day or week. This is always a work in progress and sometimes I wonder if I could manage it better. But I’ve realised the best approach over-all is a slower, low stress, non toxic life.
I’ve tried my best to throw everything at my recovery and I’ll continue to, but I never thought from that dark place in hospital, I’d be sitting here typing this having healed nearly all of it. I just wanted to walk again but I’ve achieved so much more which as you can imagine feels pretty amazing. If this is what’s possible in 4 years I’m excited for the 5 year mark and beyond.
OMS has allowed me to take control of something I initially thought I had no control over. It’s given me and my families lives back and I honestly doubt I’d be doing this well if I didn’t find OMS. I’m so grateful!
I feel when we give our bodies the right tools they have an amazing ability to heal themselves. It’s just our job to allow them the space and nutrients to do so. I’ve also learnt over the years there is immense healing power in the simplest things like - getting out in the sun, being in nature, being kind to our bodies, daily gratitude, omega 3’s, good sleep, exercise, fruits and vegetables, purpose, social connection, love, family and happy relationships. It all has such a big impact on our health and well being.
I hope this post has helped you to see how I'm doing and what’s possible on the program.
If it’s early days for you on OMS just remember healing might be slow, but it does happen! Keep the faith!!
I heard this quote from a motivational video clip I found in the early days and it resonated with me so much back then…
Start by believing it’s possible!