Tuesday, 26 June 2012

It's Official. I'm one of the 0.1%

This is a really hard post for me.  Some of you will know I had an MRI back at Easter, and nervously spent my time pinning while I waited for the results.  Yesterday I went to a new neurologist for a review and second opinion.  She confirmed my diagnosis.  I have Multiple Sclorosis (MS).

What is MS?
When I was told by the first neurologist that he thought it was MS, he asked if I knew what it was?  Apart from doing the MS read-a-thon as a kid I really didn't have a clue. 
MS is an auto-immune degenerative disease.  Your own immune system attackes the myelin sheath (the fatty lining) around your central nervous system (your brain and spine).  The lining is a bit like the plastic coating around electrical wires, when it is damaged the wires (or in my case nerves) are exposed and don't work properly.  The messages get disrupted or don't get through.

Who gets MS?
About 1 in 1,000 people in Australia have MS (the other 99.9% don't).  According to MS Australia, twice as many women as men have MS, with the onset of symptoms occurring most often between the ages of 20 and 40.  It is often referred to as a young person's disease.  I'm 42.  My neurologist said to me it is quite possible that I have been living with the condition for years but the symptoms have been mild.  In hindsight, I can now see some of those symptoms that I dismissed as being 'normal' or 'nothing to worry about'.

Cause & Cure
This is the bad bit.  Researchers still don't know what causes MS and there is no cure.  Around the world, there is much research being done.  They're getting close but they're not quite there yet.

To tell or not to tell?
I really struggled to know whether to 'go public' with this. I'm pretty much a wear your heart on your sleeve kind of girl, so late last night I published a photo on instagram, and then it was done. It was out there, and I didn't feel any pressure to keep this 'big secret'. I hope that by sharing this, I have helped to spread some awareness of the condition.

Now what?
Yesterday I went to the pharmacy with my first prescription for a drug that I must inject myself with everyday, much like diabetics (another auto-immune disease) have to inject themselves with insulin everyday.  The medicine won't cure the MS, but it helps.  Much like a diabetic, I now need to take control of my diet and lifestyle so that I can lead a happy and fulfilling life.  I don't mean just eat an apple, I mean I really have to overhaul my whole diet and lifestyle - eat really well, exercise, control stress and simplify my life.

I believe:
You are what you eat
You are what you think
and you are what you live.

Some Changes to my Blog
I am a home decor girl.  It's in my blood.  I will go into a homewares/vintage shop and be in my own little world.   Touching and feeling things.  Imagining where it would fit in my home.  You ladies can relate to that, it's just the way we are.  So my blog will still have posts about making over furniture, creating a stylish home, and fun craft and DIY projects.  But ... one of the biggest challenges I have faced lately is how to eat really healthy delicious food that is low in saturated fat and dairy-free.  I've had the good fortune to meet half a dozen ladies with MS in the past few weeks, and we are all in the same boat. Asking each other "how do you mash your potatoes without butter and milk?  So over the coming weeks I will be adding a page to the top of my blog called 'The MS Foodie', to share the food I've found.  That doesn't mean you have to have MS to eat the food - it's just really healthy, tasty food - best enjoyed in a stylish setting!

Love and big virtual hugs to you all.


  1. Oh Kylie, how hard it must have been to write that.
    My thoughts and prayers are with you as you begin this difficult journey!
    Love always,

  2. A big virtual hug to you, Kylie. What a shock the diagnosis must have been. From reading your post though, you do sound as though you are handling this with positivity and I look forard to discovering The MS Foodie. Take care xxx

    1. Thanks. I think a positive attitude is half the battle isn't it? There are people doing it much tougher than me.
      I've always been a bit of a foodie and loved good food, the problem was it might have tasted good, it just wasn't that good for me.

  3. {{{hugs}}} Kylie - I am so sorry that you received this diagnosis. Although I don't suffer from MS myself, I know all about demyelinating disorders as my daughter had one.

    Good luck with modifying your diet, and finding lots of new foods that taste good and are good for you!

    More {{{hugs}}}

  4. Hi Kylie. This must have been so hard for you over the last few months. I already thought you were a pretty awesome lady, but the way you are dealing with this just proves it.
    Cas x
    p.s. This comment just doesn't express what I want to say to you properly and I just want to give you a massive hug xxx

  5. Kylie
    What a shock for you. And I am so sorry to hear this. I hope you find a way through and will be very interested to see what you do with your diet. I know there are more diagnosis' in the cooler areas of Australia as sun exposure is supposed to help with the symptoms. I am looking forward to learning lots from your journey. It must be so hard but there will be lots of positives along the way.

    Sending love to you

    1. Thanks Carolyn,
      Yes vitamin D seems to be a factor. The incidence of MS increases with distance from the equator - and here I am in sunny Brisbane!
      Thanks for your support.

  6. Hi Kylie. I'm so pleased you have decided to share your experience, as I think writing and the blogging community will be great for importantly yourself, but certainly many others, whom I'm sure will appreciate your discoveries (good and bad) about this largely unknown disease as you go along. The decor/interior design stuff is lovely of course, but I love to read "real" life experiences and this post was so eloquent and lovely to read - despite your not so wonderful diagnosis.
    So many changes. What a brave and confident outlook you have.

  7. Love and vital hugs back to you Kylie. xT

  8. hi Kylie - what a tough diagnosis. I hope you are feeling ok. I personally don't know much about the disease. there are lots of good foods that you don't need butter and dairy for. better to be healthy and eat what you need for MS.
    take care

  9. Kylie, I am just going to say,we are all out here thinking of you with lots of hugs and support,if only through our blogging. Take care my friend. xxoo

  10. Sending you love and virtual hugs back to you too Kylie.xxx

  11. I'm so sorry that you have to deal with something like this, but you sound like such a positive person, I'm sure you will cope amazingly! Thinking of you. x Sharon

  12. What bravery to so positively face the diagnosis you've been given, and to share the significance of that here on your blog. I don't want to sound flippant in terms of the potential impact of your disease, but having known several women with MS (one a work colleague, and the others as patients), they all seemed to share the most amazing sense of purpose in terms of living well - both by managing the disease through health and lifestyle choices, but also by retaining a sense of themselves as they faced some of their challenges posed by their symptoms. My thoughts are with you as you focus on this time of transition - and will look forward to the slight change of focus on your blog...I think we can all do with some healthy eating/lifestyle tips (...or at least I hope I'm not the only one of your blog-readers who seems to continually over-indulge in chocolate whilst reading blogs!). Thank you for sharing your journey and broadening awareness of this disease x

  13. Kylie, I'm numb from your news as I try to imagine what my own reaction would be and I'm so in awe of your upbeat post :) I am a chubby bubby who adores food but could so do with a better diet so I'm really looking forward to seeing what you come up with.........B:) xo

  14. Hello Kylie

    you post is exquisite.
    you are exquisite.

    you are brave and an awesome soul and I applaud you for your honesty and coming forward for us and especially me to learn.

    I wish you so well Kylie in all that you touch x

    x Loulou

  15. I'll be looking for recipes for you.
    You have inspired me to start looking at my diet and lifestyle
    so thankyou from me......
    Tania xx

  16. Hey Kylie, thanks for sharing your journey with us as you embrace changes in your lifestyle in such a personal way. Your are inspiring and also very brave. Go girl!! xx

  17. holy sh*t Kylie!!
    I've been absent from blogs for way too long (family, full-time work, the universe!!) - and thought I'd check in on you....and this. oh my.
    my perceived troubles pale into absolute insignificance.
    sending you loads and loads of cyber hugs and love from down here in canberra lovely lady.
    you are amazing for sharing your news and journey thus far here - you're an inspiration.
    thinking of you
    c xxxxxxxxxxxxxxx


Related Posts Plugin for WordPress, Blogger...