I’m bloody frustrated today!! The reason for my irritation is that I’m sitting here having a huge battle with an impending cold!!! I’m sniffing every 6 seconds, (I know… get a bloody tissue), thinking to myself, for god’s sake, just do one!! I will not put up with getting a darn cold, especially as the kids are back at school tomorrow and I have some free time on my hands… (*think dancing mum emoji next to sad looking kids emoji)
I have spent a long time now keeping relatively quiet about what essentially is a big part of me, and it’s the reason I kick myself when my immune system gives in to a simple cold. Moving to Australia and becoming an expat was a good chance for me to close the door on a chunk of my life and pretend that it never happened. Why do I rarely talk about it? Probably because I am generally very well, and I don’t want to be drowning again in that vat of “illness”.
Recently however, I have had a lot of questions about my health, after I uploaded photos of myself in hospital.
So, my little secret??
I have Transverse Myelitis. Whaaat?? Yeah I said the same thing when I was told. In a nutshell it’s a neurological condition in which the spinal cord is inflamed. The inflammation damages nerve fibres, and causes them to lose their myelin coating leading to decreased electrical conductivity in the central nervous system. (That’s about as ‘nutshell” as I could manage).
One day, I realised the pins and needles I had over the weekend weren’t going away. The next, I had numb legs. The next, my hands were tingling and the feeling in them was disappearing.
The next…. I couldn’t get out of bed!! I was a human jelly! Not paralysed thank God, but no feeling from my neck down which made it incredibly difficult to move. You know the feeling you get when you have an anaesthetic? This led to an anxious trip to my GP who sent me straight to the emergency department. Phew, I was ok, I was told I probably had Guillain Barre syndrome and you ALWAYS recover from that. Off I went to the hospital for the doctors to do all sort of disgusting tests on me, only to be told three days later it was actually Transverse Myelitis! And no, you probably won’t ever walk again!
Ten days in a hospital room, a kind nurse by my side cutting up my food, lumbar punctures, MRI scans, neurological tests, intravenous steroids, lots of cards, hundreds of student doctors excited to meet me, weepy well wishers carrying flowers, and then I was sent home! That’s the start of the story! Now I’m almost 12 years down the road, the hardest road I’ve had to travel, I am like a walking pin cushion, have a dodgy thyroid but I’m actually ok!
The October before we moved to Australia, I was in a dark place. I was in a constant state of severe pain and fatigue, and forever left lying in bed with no energy! I felt useless and needed to escape! Don’t get me wrong, I had good days, where I felt almost “normal,” but they came at a high price. I would go out with my friends, knowing that the next day and the day after would be a complete write off. I would desperately want to take the kids for a walk on the beach, but end up in tears, lying in bed, listening to Mr W and the kids getting their shoes on. The reality of any neurological and auto immune condition is it’s debilitating in so many ways. For me, on the outside I looked perfectly normal, and on a good day, you’d probably have no idea there was anything wrong with me. On a bad day…. no words can describe that horror story to you!
Enough was enough!
I felt I had missed out on 8 years of my life already, and I longed with every bit of me for just one more chance! I did heaps of research into diet, exercise, completely natural versions of medicines. I spoke to all sorts of experts in healing! I totally overhauled every bit of food I put in my mouth, and we made the decision to move abroad if I could at least ditch the fatigue. Introduce the Whole 30; and an incredible three months of each day feeling a little bit more human. I began sleeping really well, I was walking a little further, I was staying awake a little longer. I got rid of the wrist supports I’d worn for years, and the stick I was using to walk with. I eventually stopped taking medicine altogether!!
It sounds like a miracle I know. Maybe it was. All I can say is after nearly 8 years of hell, 8 years of being unable to fully enjoy my children or my life; my dreaded fatigue, and my pain were dramatically reduced, so we made the decision to go on an adventure, quickly, before it all came crumbling down again. Mr W searched for jobs all over the world, we desperately wanted to go somewhere, do something exciting, and make up for the past 8 years!! A job offer in Australia came up, we applied for visa’s, and we were off!!! From job offer to Heathrow was about 12 weeks. Expat life here we come!!
The Wilson’s of Oz was born!
As soon as the trip began I decided not to write about surviving Transverse Myelitis, and I started to write about our Expat adventures. I wrote about our days out and all the wonderful things we were seeing Down Under. The more I wrote, the less I thought about my ‘old life’! I forgot about all those people who I had wanted to encourage, the TM warriors who I had wanted to give a huge shout out to. The ones surviving even though they felt terrible! I forgot about the message I wanted to send to everyone that it can get easier. I was having the most amazing time and I hadn’t once reassured anyone that it can get better.
I had once imagined I would become a “Recovery Role Model” for patients at the start of their journey, but in reality I was too frightened to even bring it up in public. I was still running away from all those horrid feelings I had left behind me. I thought that if I was to say aloud how good I was feeling, I may jinx myself and end up back in a hospital bed, only this time I would be 10,000 miles from home. So, I haven’t really mentioned it.
Writing my blog, experiencing ‘living’ again, and ‘Turning life into an Adventure’ was exactly what I needed to do and I desperately wanted other sufferers of TM to see that feeling better tomorrow is possible no matter how far down the road you are.
‘You can look to the future, you can hope for something better, you can plan ahead. People do come out the other side, albeit a little bruised and battered!’
Why bring it up now?
I guess now that more people are checking out The Wilsons of Oz, not just Grandma, I have more of a voice?!? (Does it work like that?) I guess I’m in a better position to let people with a health condition to know that there is hope, and I’m no longer too scared to talk about it here. There is light at the end of the tunnel and sometimes we just need to keep holding on to that glimmer, and keep our minds open. Know your limits, set your goals, and you’ll amaze yourself. I promise!
Just because something isn’t happening for you right now, doesn’t mean it will never happen – Unknown
I’d like to dedicate this post to a true warrior! Joanne Lokwiya is a friend of mine who also suffers from Transverse Myelitis. She is brave, she is beautiful inside and out, and she is a true fighter! I want her to know that anything is possible! xxx
Transverse Myelitis Society (UK)
The 9th June marks TM Awareness Day 2017. It would be awesome if you could support the Transverse Myelitis Society with just one click here!!!
You can read my Whole30 story here
4 thoughts on “A chapter from my “real life story” – Dedicated to Joanne…”
Excellent read Olivia and very poignant I am so glad that you are finding the weather more conducive to your condition long may it continue. Great that you are making people aware of TM and hopefully in their quest to get better quality of life. I would say the life you have now in Australia is a lot better seeing all your intrepid adventures keep it up and all the very best in your quest to keep well
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Thank you Alan xx Definitely feeling better at the moment x
Thanks so much for posting this Olivia.
I was diagnosed with TM in Jan 2015 and it has been life-changing for me too.
I “met” Joanne Lokwiya on a TM group and she has supported me through some very dark times. I feel blessed to call her my TM sister.
Gentle hugs x
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Ah so glad you liked it! It’s a crazy journey this TM thing, and we all need to stick together xx