In November 2018, my progressive MS was confirmed to have been stable for at least 2.5 years, by high-resolution brain and spine scans. No new MS lesions. Brain volume consistent with my age. The first independent evidence of recovery, six years after starting OMS; thirty years after my first and only MS ‘episode’.
I’ve listed symptoms that went away, the painkillers I no longer take, the distance I can now walk at a faster speed. That is subjective - how I felt then compared to how I feel now. But a brain scan. That’s real hard evidence!
My MS diagnosis was confirmed by radiographers with no knowledge of my adherence to OMS. I can now refute with certainty any suggestion that I was misdiagnosed. It was labelled benign at one stage, but it never felt benign to me!
Based on my experience, the OMS program can help us all, however long we’ve had MS.
Living with MS, before finding OMS
I was diagnosed in April 1989, having returned to work, feeling fine, when my son was six months old. I became incredibly fatigued, looked ‘like a ghost’ walking very slowly around the house, couldn’t do basic things like tie shoelaces, write or use my right hand.I had a brain scan in January 1989, but had no idea it might be MS.
Before social media, I relied solely on the medical profession mantra: “don’t tell, wait and see”. There were no drugs for progressive MS. The MS Society sent wheelchair leaflets. I heard of a cellist, Jacqueline du Pré, who died with MS aged 42. This resonated with me: did I only have thirteen years left? I was the mother of a one-year-old child. I was scared I wouldn’t see him grow up.
Thanks to the fantastic, calming, support of my husband, and later my son, I had a fulfilling career with IBM. I travelled alone to European sites and the USA. MS was progressing, taking my energy, stamina and balance but it was relatively easy to hide in the early years. I attributed my limp to a minor car accident. I told only Occupational Health about MS until travelling and out of hours conference calls became too much. I couldn’t work enough to make up hours spent sitting in my office with severe pain in my right arm and leg hoping no-one would come in. I wasn’t walking far and had a blue badge.
I retired early in 2010; my dwindling life settled into a retired, disabled, routine. I became too tired to do much at all, sleeping for two hours every afternoon. I fell a few times, convinced this was my future, afraid of walking in case I fell again. I used a stick and a foot-up attached to my shoe to prevent tripping. I felt overwhelmed by increasing disability.
I was considering whether our stairs would take a stairlift when it became necessary, as my balance was poor and walking increasingly difficult, or whether we'd have to move house. I went and looked at one installed in a house nearby with similar stairs. I tried not to go up and down unless it was absolutely essential. My husband fitted an extra small banister at the top where the stairs turned so that I felt safer.
Finding OMS, reaching “peak MS”, and recovering
I found OMS in 2012, but too tired to adopt it all at once. Vitamin D, Omega-3 (flaxseed oil) and diet changes were easy. Meditating took me two years; exercise came later. My symptoms were mostly sensory: pain, pins and needles, numbness; obvious to me when they stopped. No new symptoms appeared after the last one in September 2013, my “peak MS”. I was nine months into the diet.
I now walk 2.5 km with Nordic walking poles and walk unaided for shopping etc. I get up from mat based exercises without help, and use escalators without fear of falling. I no longer book aisle seats at theatres in case I need to nip out. I go up and down stairs whenever I want without thinking about it, and the extra banister has just been removed as I no longer need it. No suggestion that we'll ever need to move house. My mind is clearer. I prioritise more effectively, using far fewer lists or reminders. I remember recipes. I read novels again, having stopped years ago. I could go on…
All of this has given me back my confidence. Life is more ‘normal’, to be enjoyed rather than simply survived. I am in control of a progressive condition that is no longer progressing. I smiled as I wrote that last sentence!
My neurologist says my MS is ‘better than stable’, greeting me at my annual review with his expectation that I have improved again.
Alongside OMS, I see an MS Specialist Physiotherapist regularly. I used to have appointments every 2-3 weeks, but they’re now 10+ weeks apart. The NHS ‘MS Fatigue Management Course’ helped enormously with my late acceptance of MS.
My future, following OMS for life
I know I’m still improving, every day. It’s not all perfect: Debilitating fatigue followed a 'normal' infection last summer but now I feel so well again. In common with those I know who follow OMS, my general health is excellent.
The relentless fear finally left me last year. I no longer feel restless, chaotic and helpless, but capable and optimistic.
I attended my first retreat last year. I’ve become an OMS Ambassador working with Stephie supporting our growing Circle in Hampshire. We started the group 5 years ago. Support from others following OMS is invaluable - new recipes, tips, insights from our discussions. I feel better for days afterwards; it’s a real boost to see others benefiting from the programme.
I feel so much better than I ever thought possible. I have some old symptoms, reduced in frequency and intensity. I'm working on my energy levels and mobility, but compared to all expectations 30 years ago, this is amazing! I have so much to thank George Jelinek for, and everyone now working on OMS. I don't feel that I have MS, rather I had it, it peaked in 2013. I'm well-equipped to continue recovering, by following OMS for life.
Sue Collis, Ambassador for Hampshire, UK
Sue is pictured above with her husband Mike, 29 years after her first MS episode, 5 years after starting OMS.
"Someone kindly took us picture of us at Sydney Harbour Bridge just over a year ago when we finally made it to Australia for a fantastic month's holiday (including 2 days at the test match)."
Sue attended an OMS retreat last year and is an OMS Ambassador for Hampshire alongside Steph Pielot.