My Multiple Sclerosis (MS) story-part 1 Destruction and Diagnosis

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Putting my entire MS story up on my blog like this is very personal and I have been debating with myself for a while about whether or not to do it. In the end I decided that if my story can help someone else then it’s worth it. I’m also sure that a lot of readers are thinking, my god why does this woman go on and on and on about healthy food….so here we go, here’s the answer

The summer of 2007 I was diagnosed with Multiple Sclerosis. MS is a neurological disorder with many variations of symptoms such as fatigue, visual problems, balance and pins and needles in hands and feet to mention a few. It’s an auto-immune disorder where the body gets confused and starts attacking it’s own healthy cells, mainly the protective substance (myelin) around the nerve fibres. This leaves scars on the nerve fibres and signals from the brain to various body parts slow down or can’t get through at all. Imagine a dog chewing through a telephone cable before hands free existed. Our brains really should go wireless!

I’m quite sure my MS, or imbalance in my body as I tend to think these days, didn’t start that summer. I think it started a few years earlier when I was going through some extreme stress. I was working as a restaurant manager in a busy restaurant in Notting Hill. It was really hectic at times but that wasn’t the main problem, it was more that it was a job that I didn’t want to do. A part-time job during university led to an assistant manager position. I was offered and thought, what the heck until I find something else. Then shortly thereafter I was offered the position as the general manager and again I thought what the heck, until I find something else….

I was getting my portfolio ready but as the perfectionist I used to be it had to be super perfect and before I knew it I was too stressed, too exhausted and had too low self-esteem because it had taken far too long to get my portfolio ready. (Apparently people with MS tend to be perfectionists who are never happy with anything they do) It’s not that I didn’t like my job, the people I worked with were great and a good night was as good as a great party…..that we got paid for! (Not all easy-peasy though, some days and nights were very very hard)

Lesson to be learnt; if your gut feeling is telling you that you are not happy with something in your life, leave it, change it, do anything but don’t stay stuck. It might be hard to change but the consequences of not changing are harder to deal with, believe me.

Anyway I started to feel more and more unwell and exhausted. I used caffeine and sugar to get me through the day and I used to have to drink a large brandy after a 14 hour shift to wind down so I could go to sleep. I was partying hard, eating crap food and very little exercise. Then I started having some serious chest pains. I was absolutely sure I was going to have a major heart attack any day and went to my GP time and time again but he just kept trying to reassure me that all I had was a cold ( I kept going back to him with chest pains for a whole year). I went to the emergency twice, crying and shaking and they just said…..you guessed right, that I had a cold. Eventually I struggled to leave the house because the chest pain and sense of imminent death just got too strong. I went back to my GP and thankfully he was not there that day. The female GP that I saw just took a look at me and said, you are having serious panic attacks girl. You need to take time off and I panicked ( all I knew how to do at that point ) I could not take any time off, don’t be ridiculous! But I took a week off and then went back to work on prescribed Valium. (Only took Valium for a week)

In hindsight it was quite funny, there were times when we had enormous queues of people and I just swayed around in slow motion in the midst of all the craziness. Another time after having been on a mad holiday in Sicily, when boarding the flight back I brought out the brown paper bag that I used all the time to breathe into ( it helps when having a panic attack) and we ended up having a whole row of seats to ourselves. No one wanted to sit next to the crazy lady with the brown paper bag! There were also some sad stories during that time when I didn’t function as I should, and wasn’t there for loved ones.

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I was ordered by my GP to do a CBT ( cognitive behavioural therapy) group therapy course and it helped me enormously. I was thought how not to always think the worst and to be positive. I forced myself to get back travelling on the underground and it was hell but I just kept repeating my affirmations; I’m ok, I’m not going to die, I’m ok I’m not going to die! And all the while reassuring people on the tube that I was ok despite the flood of tears streaming down my face and the heavy heavy breathing! I said; It’s ok, I’m just having a panic attack and then fired of one of my best restaurant manager smiles! ; )

Things got a bit better after the CBT, I could control my panic attacks and felt a bit less anxious but then one day I woke up and couldn’t see a darn thing on my left eye. Not a thing ,completely blind. I was told I had optic neuritis which is an inflammation of the optic nerve, that I most likely would get my eyesight back but that I now had an 80% chance of developing MS. So my husband and I thought enough is enough and left our respective jobs and went travelling in Thailand and Australia for 5 months, a great trip with lots of experiences and lots of relaxation. Already then did I start reading about alternative medicine and food, thinking about health and reflecting about what my body had gone through. Came back in May and in June I had another body-really-not-acting-like-it-should-experience. Parts of my body had no sensation, had difficulties walking straight, no bladder control, tingling in hands, feet and legs, double vision ( I had to wear special glasses in order to be able to see ) and an enormous tiredness. It felt like walking through quick sand. I also had the MS “tight belt around my chest” sensation.

I signed up for a clinical research trial at the neurology department and went to do an MRI scan and afterwards was taken into a room where a couple of people were working. The neurologist who did the study showed me slices of my brain on the computer screen and cheerfully said, isn’t this great, look at the stuff modern technology can show us. Meanwhile my vision got blurry from lack of oxygen ( I stopped breathing) and tears because while he was busy being delighted about modern technology, I just kept on staring at the scars on my brain that of course I knew from having done some googling meant that I had Multiple Sclerosis. Multiple Sclerosis basically means; several scars. The neurologist has since apologised after I wrote him a long letter explaining my distress. Shortly after that they confirmed my suspicion, I had indeed multiple sclerosis

End of part 1 of my MS story.

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Because MS is an inflammatory disease I wanted to mention Turmeric ( the orange spice that colours curry ) probably the best anti-inflammatory stuff you can get into yourself. So if you have any problems with inflammation just consume lots. It’s sooo good for so many reasons that really I think everyone should eat it ….all the time. Turmeric has a really strong smell but you can easily put 1/2-1 teaspoon in scrambled eggs, a chilli, soup, fried rice, a smoothie…..anywhere really.

This amazing tea recipe was given to me by a dear friend. He prepares the tea in a large thermos in the morning and then travels around London with it on his cool motorbike with a roof! I’m not quite that cool but the tea is nevertheless amazing!

Ginger, turmeric, cinnamon & rooiboos tea

7-8 thin slices of ginger
1/2 teaspoon of turmeric
3 cloves
1/2-1 cinnamon sticks
1 teaspoon raw honey
1 bag of rooiboos

Peel and slice the ginger. Add all ingredients to a thermos or teapot or whatever you want to use. Add 1 liter (18oz) hot but not boiling water. Enjoy throughout the day!

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Evil sugar and “sugar free” bounty bars

20140119-213153.jpgI’m detoxing….uggghh! After 7 days I haven’t reached the I-feel-amazing-state yet. Currently I’m in the I-feel-rotten-please-give-me-some-sugaaaaaaaar state. But I’m not going to let the evil white stuff win. I know that if I just hang in there a couple of more days the sugar will realise that it’s defeated and I will then feel truly good and won’t crave it any longer.

You see sugar is a drug (of sorts) that creates a dependency. The food industry knows this and hence keep on putting lots of sugar or sugar substitutes in their products so we will keep on buying them. And this is the problem these days, even if one doesn’t eat that much obvious sugar (candy, cakes, sugar in coffee or tea etc) it’s everywhere ( bread, yoghurts, pasta sauces, cereals, you name it ) Unless you cook everything from scratch it’s very hard to not eat a fair amount everyday. A 200ml glass of orange juice and a 150ml pot of fruit yoghurt and you have almost reached the recommended daily intake of sugar (50gr for women in the UK) Add a 39gr of sugar can of coke and you have way surpassed the RDI…

Apparently your average 15 year old boy in the UK eats 40kg of sugar a year. And the rest of the world is no better. In my birth country Sweden it’s 43kg per person per year. That’s more than double of what’s recommended

A diet high in sugar is bad for your health, certainly not just for weight gain but for diabetes and apparently cancer and moods. Here’s an interesting story in the Telegraph about a woman giving up sugar in order to fight cancer.

So can I never eat sugar again? No, I believe that I can have a treat every now and again and this is exactly what sugar should be. A treat, not an every day occurrence. When I was a kid I used to get a small amount of money so I could go to the local shop and get a bag of candy and a Donald Duck magazine. But that was it for the week, no sodas, ice-cream or candy during the week. And that’s how I believe it should be but somewhere down the line we lost sight of this (or the food industry started cramming so much sugar into every conceivable product so even if you stuck to a candy only on Saturday approach you still potentially would be consuming lots of sugar everyday)

I’m not going to talk too much about about various sugars and sugar substitutes. It’s confusing. Personally if I want a special treat with some sugar in it my first choice would be raw honey or maple syrup for their nutritional benefits. (Very important that it’s raw honey since processed honey has lost most it’s nutritional benefits) Here’s an article in the guardian about different sugars. Bottom line is whatever you use for your sugar fix, use it sparingly!
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There’s an Australian website called I Quit sugar, they are dedicated to giving up sugar (no shit Sherlock) so check out their site for more info, recipes and if you are really addicted you can join an 8 week program to quit.

If you however have developed a candida overgrowth which I believe I had at one point you have to go on a much stricter diet than the one I quit sugar suggests. Check out mindbodygreen for more info.

Anyway here’s a yummy Saturday night treat recipe slightly adapted from I quit sugar

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Bounty bars

Coconut Filling:
2/3 coconut milk
3 tablespoons rice malt syrup
3 tablespoons coconut oil
2 cups desiccated coconut
Pinch of sea salt

Raw Chocolate Coating:
1 cup coconut oil
1/2 cup raw cacao powder
2 tablespoon rice malt syrup
Pinch of sea salt

To make the coconut filling, place the coconut milk, rice malt syrup and coconut oil and salt in a saucepan. Over a low heat, stir the ingredients together until combined. Mix through desiccated coconut.
Line a tray or container with baking paper. No need to use all of the tray, you can just roll up the baking paper on one side if it’s too big. I used a 13cm x 23cm tray. Press the coconut mixture into the pan so that it is about 1.5cm thick. Put in freezer for 20 min or so. It needs to be quite hard but not so hard that you can’t cut it.

Cut the coconut filling into bars, roughly 1cm x 4cm. Cool in the freezer until very cold (this will make the chocolate coating step easier).
For the chocolate: place all ingredients in a double boiler, stirring until smooth. Allow to cool slightly.

I found that the easiest way to coat the bars with the chocolate was to dip them all individually in the melted chocolate. Place on a tray lined with baking paper and refrigerate for 5-10 min. Then dip the chocolate bars for a second coat. Put in fridge for another 10 min before serving.
They can be frozen. The problem with these are that they are so yummy that it’s difficult not to eat all in one go…so if you like me struggle to apply self-control make half a batch and then share with as many people as possible!