Five Things I Do to Stop All MS Attacks

I stopped drinking milk

I switch from cow’s milk to soy.

I was never drinking glassfuls. I was really only drinking it in two coffees I have each morning and sometimes in a bowl of cereal at night.

I didn’t think it would make much difference but it has made a huge difference.

There are so many kinds of non-dairy milk available now. Almond milk, oat, pea protein. There are more types and varieties all the time.

Switching is now very easy. I think it tastes better.

Why no cow?

Cow’s milk has been linked to multiple sclerosis in many studies.

The protein butyrophilin closely resembles the oligodendrocyte glycoprotein, which covers myelin.

It’s thought to perform ‘molecular mimicry’ and initiate the autoimmune response that triggers the MS attack.

In experiments, cow’s milk has scarred the brains of rats and also mice in a separate experiment.

This one study specifically finds that:

The demonstration of molecular mimicry between MOG (myelin oligodendricite) and BTN (butyrophilin) , along with sequestration of BTN-reactive Ab in CSF suggests that exposure to this common dietary Ag may influence the composition and function of the MOG-specific autoimmune repertoire during the course of MS.

The Journal of Immunology, 2004, 172: 661–668

That’s reason enough for me to stay well away from cow’s milk. (Doesn’t it belong to baby calves anyway?)

I try not to eat fake food.

Have you ever noticed in a supermarket, you walk down aisle after aisle of edible non-food?

I’m not perfect, but I definitely avoid food that comes in packets and boxes, apart from whole grain food like rice or pasta.

Instead, my family gets a big box of fresh seasonal vegetables and fruit from a local supplier delivered every Friday night.

Every Saturday morning is a bit like Christmas, seeing what we’ve got in the box.

Our mission is to eat it all without waste.

There is loads of colour in this box and eating food with loads of colour is good for the gut microbiome.

Sweets

That doesn’t mean that I don’t enjoy things like cake. I have a sweet tooth, but the less sugar I eat, the less I want.

If I want something sweet, I like home-made things and usually only put in about 1 quarter of the sugar in recipes. I think that’s sweet enough.

Of course, I love chocolate as well. You would think that avoiding dairy means no more chocolate. Wrong!

Dark chocolate often has no dairy. If the wrapper has a warning that it may contain dairy, I consider it safe enough. I try not to be too obsessive or anal about these things.

Have you ever had good dates? We call them nature’s chocolate. Even the kids.

Vitamin D Tablets

I take extra vitamin D most days. That is, most days I remember.

I’ve had a number of blood tests that have showed my vitamin D levels were quite low.

I usually take about 5000 International Units (IU), which is 5 tablets of 1000 IU each and then if I forget for a while that’s okay. It stays in the system for quite a while.

Vitamin D is non-toxic and you can’t overdose.

Exercise

My two daily goals are to write everyday and to walk everyday. (These days it is sometimes jog because I am able to run again.)

Exercise releases feel good chemicals that are neuroprotective. A nice hit of endorphins from exercise helps me feel more confident, happier, better organised for the day ahead. It clears the driftwood from my mind.

I tend to exercise for my mental health as much as the physical health benefits.

I get ‘high’ everyday

This one could describe 15 different things I do to get small and big highs.

I’m a pleasure seeker. These include doing any of the following:

a walk through the bush
time in nature
classical music
sex
meditation
reading
expressive dance routines with my 5-year-old
delighting from the blast of a cargo engine with my train-obsessed toddler son
family gets me high
a good cosmology documentary
learning about anything new and interesting that I didn’t know
good conversation
helping someone
music, red wine, movies, books, relationships…

With a family and busy schedule, it doesn’t matter what I do, but I try to fit in at least two forms of getting high every day.

These things all can get me that little burst of happiness we all need.

August 6, 2020May 4, 2022

The paradigm shift of a tree change

Tree change for a higher quality of life

A few years ago we were in Sydney. The traffic woke us. The buses roared below our apartment. We drank too much. We worked too much. One day our rent went up and I said ‘I have a house’.

That’s not to say we passively drift with the breeze and end up wherever we end up. In fact, we have the rudder and direct the flight path with earnestness, as well as lightness.

Right now the carpet is hovering over the meadows of asphodel. By that, I mean we have a heavenly life in a country village. We are two hours train ride from Sydney. We neither make nor need a lot of money. Yet we are veritably bathed in riches.

Revealing you are going

When you first move to the country —outside a metropolitan city — many people you leave behind think you’re having a tree change. And that a tree change is a sign of weakness. And that it won’t last. They don’t say it, because that would be rude. But that’s what they think.

They see the pursuit of a humble, quaint, and frankly boring existence with a backyard.

They might even become patronising. Couldn’t cope with the city? Toss ambition to the wind and opt out of life.

People have interesting reactions. Bemusement. Disbelief. Puzzlement. Disappointment. Envy. Curiosity. Rejection.

What you are doing is confronting. It offends sensibilities. It’s a middle finger to the man and the hapless followers of the man. It defies the convention of work. Of pain. Of doing-what-we-have-always-done-because-that’s-what-we-have-always-done.

Have pity.

When you shine a light on dysfunction, it hurts the eyes a bit.

A new mindset

Here’s the thing. Escaping to the country is not a tree change. It’s a Paradigm Shift.

It’s a move from ‘How much can I make?’ to ‘How little do we need?’

Our two-bedroom cottage is like a mansion to city visitors.

We have trees in our garden. We pick fruit on the street when we leave the house.

We walk our kids to school and preschool.

We make boats from sticks and leaves and race them along the gutters during the rain.

We wear gumboots and go rainstomping.

Everyone knows us by name.

We have all had COVID and received deliveries of cake, soup, craft, puzzles, and chocolate.

There are four cafes in our main street. We go to each of them regularly.

We all sleep in one bed, most nights.

I work from home in the garage. We renovated it and made it a nice little retreat pad. When people stay over, this is where they sleep. There’s a nice little Japanese-style bathroom and laundry on the end, down a step.

This is the meaning of life. And these are kind of obvious things, are they not?

Your values, perhaps for the first time, become very clear. You see what is truly important: Your family. Your relationships. Contributing to your community. Eating well. Love. Maintaining your body in good condition. Allowing your spirit to frequently soar.

But when you’re busy, you forget them. They don’t really land with you. You know they’re the most important things in life in your head, but you don’t make any emotional connection with the truth of it. Until you go slow.

And then you are struck by how much certainty you have that these are by far the important things in life.

In late capitalism, we are kept very busy. Kids. Work. Shopping. Football. Culture. News. We don’t have time to think. We’re very active.

It’s a great gift to yourself to go slowly. Cut back to the basics. Go a bit Walden for a while. The benefits can’t be truly appreciated until you do it.

July 16, 2020May 4, 2022

How to Survive MRI Scans

person with multiple sclerosis entering MRI machine

When you book an MRI appointment, you are asked a lot of questions. Many of them start with the words “Do you have…”

“Do you have a pacemaker?”

No.

“Do you have any shrapnel in your body?”

No.

“Do you have any bullet wounds?”

So far, so good.

“Do you have any metal dental fillings? Mercury, stainless steel, titanium, gold?”

Just the cheap ceramic ones.

“Do you have any metal fragments in either eye?”

No.

“Do you have a hearing aid?”

No.

“Cochlear implants?”

No.

“Neurostimulator?”

No.

“Heart stents?”

No.

More and more.

My better half listens to me on the phone. No, no, no, no. I get a strange look.

One more question.

“Are you claustrophobic?”

The Magnetic Resonance Imaging machine (MRI) is a two-million dollar deep scanner. It uses radio waves, powerful magnets and a computer to take pictures of your organs.

Here’s something you may already know. As impressive as that machine looks on the outside is equal to how uncomfortable it is on the inside.

I remove my eyeglasses and step into the bright room. I’m wearing something that closely resembles a tablecloth. There is a bench seat upholstered in white vinyl where I sit. It’s all rather…clinical.

The blue-gowned radiologist approaches. “I’m going to inject you with contrast dye.“

I start thinking of a few favourite movies. Logan’s Run. Gattaca. 2001: A Space Odyssey.

“You might have the sensation that you’re wetting yourself. Don’t worry. It’s just the dye.”

Brave New World.

The radiologist straps my legs together with a wide velcro belt so I can’t move. Then Another around my waist. Another across my chest.

1984.

“Try to stay as still as you can.”

A cage is clipped around my head. Vertical bars run in front of my face.

Silence of the Lambs.

The kind of headphones worn by helicopter pilots are placed on top.

I hear radio signals. They’re in the control tower and talking to me through the headphones.

Interstellar.

“All okay?”

“Roger,” I say. Don’t laugh.

A slight judder of the platform and it’s mission ahead. I’m being remotely rolled into the tube.

I lived in Japan for a year. I never stayed at a capsule hotel. No regrets. Doing it now. I suck in a last breath.

The ceiling is a couple of centimetres above my face. If it were glass, my breath would be fogging it.

Yes, I can breathe. No, I am not claustrophobic. No, I am not going to have a panic attack today.

The machine kicks into action. Around me there’s a slow-moving orbit of discordant technology—banging and clashing without rhythm.

It’s an industrial nightclub in here. Thank goodness for the headphones. The music starts filtering through. I gasp and realise I will be subjected to an hour of Milli Vanilli and Rod Stewart. Do I hit the panic button?

vivid astronomical photo

If you have multiple sclerosis, you will be familiar with all of this.

MRI scans are used to diagnose MS. There needs to have been at least two episodes some time apart.

Brace Yourself, We’re Going In

Getting an MRI scan is always a confronting experience. Like a splash at a winter beach, it’s bracing. Every single time I slide into that tube, the same panic follows me inside too. And that’s okay. It’s allowed to follow me in. I realise now that it’s inevitable. As long as it slips back out within a few minutes.

The first few minutes are the key. When you get through those first few minutes, you’ll get through the scan. The panic will come, that wily fox, but he won’t stay for the whole hour. He’ll only stay for as long as you let him. So have a face off. But don’t let him stay. Sort him out immediately.

The last time I had an MRI it was not stressful. It was mostly relaxing.

How do you do that?

I have put together my top best tips.

First of all, I close my eyes.

Close your eyes

They tell you to do this, but seriously, it’s so tempting to defy a direct order, isn’t it. From my experience, I think it is better to close your eyes. Close them as soon as the platform starts rolling.

They’ll tell you that the machine is “very close”. What they mean you’ll be inside a hi-tech coffin. So don’t look. I’m human. And humans are naughty, right? So, usually I’ll take a peek. Then regret it. That fox will flash its tail. So close your eyes. Stop peeking.

Breathe slowly

If you’re not into meditation, you don’t have to be. But get into breathing.

By that I mean breathe slooooowly. And deeeeply. Big deep satisfying lungfuls. The slower the better. Do it and two things will happen. First, you’ll have something to focus on. Second, the oxygen will go to your brain, make you feel good, and cause you to relax.

On airplanes, oxygen masks fall from the ceiling if there’s a crash. That’s handy if the plane loses oxygen. And it’s handy for the crew who need you not to lose your shit.

Slow, deep breathing helps me do all sorts of things. Like city driving. Stressful work meetings. Difficult phone calls. Anytime I feel rushed or lack control, and want to sloooow it all down. I become my own personal slow coach. I whisper it to myself. Slooooow down.

That’s it. Close your eyes. Breathe slowly. Remember, people are paying thousands of yen at oxygen bars in Tokyo for this.

Enjoy the Symphony

For entertainment, you have the band. You’ve got headphones on, but you can still hear the noise. And it’s STILL LOUD. But that cacophony is NOT from the furnace of chaos. It is not a shrieking fusillage about to explode. That noise is PRECISION ENGINEERING. All working for YOU. And it’s a symphony.

Pay attention to the sounds. Listen to the distinctive jobs each instrument performs, the instruments they play. Your little factory of tin people on their delicate glockenspiels and giant cymbals. Tap tap tap tap. There’s even a conductor who leads them in.

I listen while I relax. With a sense of detached observation. Is it a melodrama? A musical comedy? Each section has a score. I have heard goppa goppa goppa goppa, and suckitup suckitup suckitup suckitup.

Mindful ‘Me Time’

The most recent MRI scans I had were totally different from the first few. When they were finished, I could have stayed longer. Seriously. When you have a busy life. Or a business. Or kids. Or all three, you don’t get much Me Time.

I understand you wouldn’t book an MRI for a recreational reason — an MRI is a bit of a hassle — getting undressed and all of that, like catching a plane — but this is your time. There’ll be no sandwiches to make or Facebook Messenger pinging you. For one brief oasis, you will not have to do anything. You temporarily have Zero Responsibilities. Relish it!

The other people in the room will have to and make things work. Your role is simply to lie there and breathe.

For refreshment, you have air. The air contains oxygen. Rest an elbow at that free oxygen bar. Breathe.

A shift in perspective changes everything.

The MRI is kind of like compulsory time spent with you. Only you. (Although you can take an invisible friend.)

You have a universe inside you. It’s your chance to daydream. Daydreaming makes for seriously creative and productive time!

MRI is time for My Radical Insights or the artful My Ruminations (Interior).

Time to bask in the glory of being You. Lucky thing! You get to be You. Feel your power.

Despite my dislike of the MRI experience, I say go in with a sense of adventure. I mean, you have to, don’t you. And you have to laugh at the situation.

I’d love to hear your thoughts about MRI scans.

Tell me what you do to get through them, or what you think of when you’re in there

July 7, 2020March 18, 2022

My Story

My name is Danielle. I’m 44 years old. I have had multiple sclerosis (MS) since 1998.

MS is an autoimmune disease. The name is a description of the symptoms: ‘hardening of the tissue’ or multiple scars. The causes are not yet understood and there is no known cure.

When an episode of multiple sclerosis occurs, something triggers an immune response from the central nervous system. For reasons not well understood, the target of that immune response is myelin, which is the fatty insulation that surrounds our nerves to protect them. The effect of the scarred myelin is known as de-myelination. It can lead to all sorts of strange and varied symptoms and interrupt the transmission of signals from the brain to parts of our body.

At first, it felt like pins and needles. They were in tight bands around my chest, and my legs. The symptoms faded over several months but never entirely went away. I had an MRI scan. It showed demyelination. Nothing was diagnosed.

A couple of years later, an episode of optic neuritis left me close to blind for two weeks. Pictures of my brain were clipped to a lightbox on the wall. The grey brain matter of my brain was covered in what looked like white finger prints. It was typical of Relapsing Remitting Multiple Sclerosis, my neurologist said. “Textbook case.”

Since my diagnosis, I’ve been in hospital four times with severe attacks requiring high doses of intravenous prednisone (a corticosteroid) to calm the inflammation.

There have been so many random acts of disability I’ve lost count.

Paralysis on one side of my body a few times. Vertigo (urgh! Like being on a yacht in rough weather for days). Blindness (fortunately not for too long). Difficulty walking (often). Loss of taste and smell (once). Burning sensations. Pins and needles (I could write a volume on that). Tightness, weakness, balance problems. Whenever I tipped my head forward, I would get a buzzing in my hands and fingers. I’ve also had a disability permit for my car. And been very worried about my future.

Initially I had decided not to take any of the disease modifying drugs because I thought there were not enough benefits to warrant the side effects.

After about 12 years, the course of the disease seemed to change. My attacks became more severe and more frequent, so I began a relatively new drugs glatiramer acetate (brand name Copaxone). I took this for 18 months but had so many attacks during this time, I eventually decided to stop.

Along my journey I have talked to different people with MS. I searched for different things to try, drugs, acupuncture, anything.

MS is a harrowing disease. It’s completely unpredictable in terms of what’s going to happen to you. And it’s isolating. Nobody else can truly understand what it’s like to be in your skin. The pain is not only physical, but existential. Every time you have an attack, you don’t know if you’re going to get better or worse.

Today, I now manage my ms entirely through diet and lifestyle.

Specifically, I have adopted a vegan diet with seafood. I’ve quit dairy, and added meditation, and plenty of exercise.

sitting at fortress 12 Great Wall of China — You can buy a T-shirt if you get this far. Fortress 12. Great Wall of China, March 2019

It’s eight years now since my last MS attack. When I tip my head forward, I no longer get any buzzing sensation in my hands. Recently started jogging, something I didn’t think would be possible again.

I’m not saying that I have cured my MS, or that I have even stopped it. All I am saying is that I have never felt better. I wish someone had told me this 20 years ago, because it would have made such a big difference to my mental health and my entire approach to life.

If you have MS, my purpose is to show people with MS that a positive future lies ahead. You’re not alone. There is evidence to support what I have done.

Living without multiple sclerosis is possible. Your quality of life, symptoms, and the course of your disease can all be controlled if not massively improved through your lifestyle.

I want to share what and how I have done it so you can too.

Be well.

Category: Stories