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Multiple sclerosis - I do it my way

Karen.jpgBy taking a holistic approach, yoga teacher Karen is living medication-free 16 years after diagnosis

I remember going on holiday one summer in the mid-1990s and having a numb body from the waist down. The sensation of swimming in the pool was very odd. It went after a few weeks and I didn’t think to go to a doctor. I was about 27 years old.

I had been getting numb feet and hands for years after that, and generally feeling tired, but put this down to working 12-hour day and night shifts and commuting into London. I was running on empty, and stressed, too. I took redundancy from work as the company were relocating, and I had a baby boy at age 35.

Roll on to 2005, age 37, and I have a 2-year old child. I was trying to fix our house alarm and it went off, ringing loud in my ears. Next, I couldn’t walk straight. I went out of the front door, but was all over the place.

It was disorienting and frightening. I had vertigo and couldn’t stop vomiting. My hands went numb, I found it hard to do anything involved with fine motor skills such as doing buttons up.

I was in shock. It felt like a bereavement – a loss of the life I thought I was going to have, more children, and a new career – I was due to start a graduate teacher training program, which I gave up.

The MS consultant phoned me one evening as I was putting my son to bed, my husband was out. I still remember the look of bewilderment on my sons face as I continued putting him to bed after the phone call, tears streaming down my face. I hope nobody else hears like that.

I do remember spending that first year after diagnoses in bed a lot, sleeping. I was extremely fatigued but, oddly, for the first time, I listened to my body and rested instead of pushing on. My son was still taking day naps, which helped. Having the diagnosis meant I felt justified in taking the rest I needed. I had permission!

Trying treatment

I went into helpless auto pilot mode. I thought the doctors know best surely… this is what they do as a specialty. I took steroids originally and I went on to beta interferon and started injecting three times a week, but every time I injected it took me 24 hours to recover. There was something in me that just didn’t feel right.

I started working part time at my son’s preschool, and then had time to start back at regular yoga practice. The feeling of strength, calm and increased energy that yoga gave me was heartening.

By 2010, I had taken myself off the medication and started doing yoga regularly and in 2014 I had qualified as a children’s yoga teacher, enjoying teaching the additional needs children in the preschool. In 2015, after a yoga retreat to India, I took an 18 month, 200-hours yoga teacher training. I’ve been teaching five years now.

Yoga means to yoke or union – of the mind, body, breath, spirit, everything is connected, so you tend to take your practice off your mat into your daily life. My coordination and balance improved, I gained strength, and an overall sense of calm. Acceptance for me is the key.

Holistic approach

As well as practising yoga, I take vitamin D, B12, magnesium, and omega 3.

If I feel an MS ‘hug’ on its way, or my legs getting numb, I’ll cut out wheat, dairy and sugar (inflammatory foods) until I’m back on track. Oddly, pre-diagnosis, I had been trying to conceive from the age of 30, and at 35, after seeing an acupuncturist who told me to cut out wheat, dairy and sugar, fell pregnant within a month! My parasympathetic nervous system was a mess... so I always revert to a ‘clean’ diet when I need to. I wake up to hot water with lemon and ginger, another great natural anti-inflammatory food.

Very recently I tried a fasting mimicking diet (FMD) for five days. I was reading a book by Dr Valter Longo, The Longevity Diet. The FMD claims to trigger cellular clean up and renewal. I had so much energy after it and am going to look at doing something similar every season.

"As well as practising yoga, I take vitamin D, B12, magnesium, and omega 3"

I have hyperbaric oxygen therapy at the wonderful Milton Keynes MS Therapy Centre which, oddly enough, I wasn’t told about by my MS doctor. It worked fantastically when I was first diagnosed, giving me much-needed extra energy. But I tried it again a few years ago and it didn’t have quite the same effect.

I also love walking and wild swimming with friends.

I was a real ‘type A personality’ and driven to the point where chronic stress was a normal part of my life. I went from being a bit of a people pleaser, to being able to say ‘no’ more. Ironically, MS changed my life for the best.

Staying positive

I believe in practising gratitude. Always be grateful for all you have, however small. I try and exercise every day. I love tai chi, and have massage to boost lymphatic flow.

I’d advise anyone with MS to eat well and listen to your body. Try and heal your gut. Make yourself a priority. Remember it’s OK to say no, it’s OK to cry, it’s OK to rest, and it’s OK to slow down. Know your limitations, but remember to keep moving. Be you. Do what makes you happy. Take one day at a time.

Get good quality sleep. Eat anti-inflammatory foods. The gut and its involvement with autoimmune diseases seems pretty topical at the moment. Join a yoga or exercise class, even if it’s online currently. Preferably start a live class when they are allowed again, or a Zoom-type class where you can feel part of a group and the teacher can see you. If you don’t like it, try something else until you do. As humans, we are designed to move.

Try and get outdoors everyday, too. If you can’t take a walk, sit in the sunshine, lie on the grass and look up at the clouds. Even in the winter I’ll lie with my legs up against a tree or a wall for up to 20 minutes – it’s so grounding and calming for the nervous system. I’m not really into social media by choice too... I find it too energy-sapping. I like some of the really good positive groups that I follow, but for me, restricting use is essential for my wellbeing.

Please don’t panic. Check out the positive stories of MS, such as Dr Terry Wahls. Take responsibility for your wellness. Find out what you can do to help yourself. Perhaps find a support group that is positive. Most importantly, listen to your body. Take time to be still and feel what your body needs.

My hope

On a medical level, I’d like to see people supported in their lifestyle choice of managing their condition through lifestyle changes. I’d like to see the doctors telling people what we could be doing to help ourselves. I’m sure there are some great consultants and MS nurses out there.

The NHS is saving £8,000 plus per year by not providing me disease modifying drugs but, more importantly, I’m managing the symptoms. But yoga classes, massages, acupuncture, and hyperbaric oxygen aren’t free. If these could be provided on the NHS then I think we could be tackling MS from all sides.

I’m not anti medical intervention, though. If I felt I needed help and medication in the future I’d ask, but there is so much we can be doing for ourselves. I’m coming up to 16 years diagnosed and feeling better than ever.

On a personal level, I’d say do not let MS define you. I don’t use the term ‘my MS’, and don’t introduce it as part of me as people are quick to judge and discriminate. After qualifying as a yoga teacher, I got offered a couple of jobs at gyms, and I’m pretty sure if I’d put MS on the form, I wouldn’t even have got through the door. I never took a day off sick, because I manage the symptoms.

Some people like the ‘MS warrior’ stance but, for me, ‘acceptance’ is the key. I’m not fighting MS, I’m living and breathing it.

My symptoms are there to remind me, I am at ‘dis-ease’. So take a breath, take it easy, and slow down. Our bodies are designed to be in a natural homeostasis state and will respond to how we treat them, so treat them well.

Find out about Karen’s yoga teaching at www.karennoonyoga.com

If you liked this, read: Diet and lifestyle advice for multiple sclerosis