Experiencing being diagnosed with a critical illness at age 37 changed how I saw the world. If it’s grey and raining when I wake up and get out of bed I still think it’s a beautiful day because I woke up and can get out of bed. I don’t take that for granted.
Earlier this year I answered a Facebook post on the MS-UK site. They were advertising yoga and I’d replied something along the lines of how after being diagnosed 16 years a go with MS that I’d found yoga to be an absolute breakthrough in allowing me to ‘unlock’ my body and find more strength, mobility and balance physically along with a sense of peace through acceptance of my situation.
The editor of their ‘Pathways’ magazine used to be an editor at Natural Health Magazine and picked up on my story. I haven’t seen the printed magazine article but below are the questions I was asked and answered.
What were your first symptoms?
I remember going on holiday one summer in the mid 1990’s 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.
What happened from your first symptoms to diagnosis?
I had been getting numb feet and hands for years after that and generally feeling tired but put this down to the long shifts I was working, 12 hour day/night shifts commuting into London on top of that.
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 in my ears. Next I couldn’t walk straight. I went out the front door but was all over the place, I ended up being 2 metres away from where I wanted to be, I couldn’t walk in a straight line.
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 like doing buttons up.
How did you feel when you were diagnosed? What were the early days like?
I was in shock. It felt like a bereavement. A losing of the life I thought I was going to have, more children, a new career as 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, listened to my body and resting 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!
What happened next? What treatment/s have you tried?
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 onto Beta Interferon and started injecting 3 times a week but every time I injected it took me 24hours to recover ….I felt worse. There was something in me that just didn’t feel right.
I started working part time at my sons pre school and then had time to start back a 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 pre school and in 2015 after a yoga retreat to India I took an 18 month 200hours yoga teacher training. I’ve been teaching 5 years now.
Have you tried any complementary therapies, diet or lifestyle changes, aside from drugs, and are there any you would recommend to people?
Yoga, of course. Yoga means to yoke or union, of the mind, body breath, spirit, EVERY thing 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.
I take vitamin D, B12, magnesium, omega 3.
If I feel an MS ‘hug’ on its way or 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.
Very recently I tried an FMD, fasting Mimicking Diet for 5 days. I was reading a book by Dr Valter Longo, The Longevity Diet. The FMD claims cellular clean up and renewal by autophagy. I felt so much energy after it and am going to look at doing something similar every season.
Hyperbaric Oxygen at the wonderful Milton Keynes MS Therapy Centre which oddly enough I wasn’t told about by my MS doctor. It worked fantastically on first diagnoses giving me so much needed extra energy. But I tried it again a few years ago and it didn’t have quite the same effect.
As stated I also cut out wheat, dairy and sugar whenever I’m feeling susceptible to a relapse as this seems to help with general inflammation in the body…and wake up to lemon and ginger, another great natural inflammatory food.
How have family and friends been since your diagnosis?
Absolutely fine. I’m not a big party type/ socialiser anyway. But love a walk with a picnic / wild swim with friends.
How is life different now to before and how do you make the most of it?
I was a real ‘Type A personality’ and driven to the point I think 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. Having found the benefits of yoga so transformational on my health, after a yoga retreat to India, started yoga teacher training. I am now a yoga teacher, qualified 2014 for Children’s yoga and 2016 for adults.
How do you stay positive?
Try and move everyday. I found yoga, but walking, swimming, massage too to move the lymph.
Be grateful. Grateful for all you do have, however small.
Eat well, listen to your body, heal your gut, eat healthy, make yourself a priority. Remember it’s ok to say no, it’s ok to cry, it’s ok to rest, it’s ok to slow down. Know your limitations but remember to keep moving. Be you. Do what makes you happy. One day at a time.
Do you have any tips or routines you find helpful you can share with readers?
Get good quality sleep.
Eat non inflammatory foods. The gut and it’s working with autoimmune diseases seems pretty topical at the moment.
Join a yoga or exercise class, even if it’s online currently. Preferably a live class when allowed back 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/wall for up to 20 minutes….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 really good positive groups that I follow but for me restricting use is essential for my well-being.
Looking back from the stage you are at now – what advice would you want to give to someone who has just been diagnosed with MS?
Please don’t panic. Check out the positive stories of MS, eg 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.
Anything else you’d like to add:
On a medical level, I’d like to see people supported in their lifestyle choice of managing the disease 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 are saving £8000+ per year by not providing me disease modifying drugs but more importantly I’m managing the symptoms. But yoga classes, massages, acupuncture, 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…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 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, slow down, eat nutritious non inflammatory foods. Our bodies are designed to be in a natural homeostasis state and will respond to how we treat them, so treat them well.
Stay well, Karen🙏🏼