My first thought after being diagnosed with MS was "but I want to grow old with my husband".
Immediately I imagined losing the ability to look after myself and winding up in an old people's home while my family were left to continue life at home without me.
Then I cried big ugly tears while my GP said kind, compassionate things about how good the treatments are these days.
It had started as a headache; an excruciating headache that I couldn't shake. I initially self-diagnosed myself with a migraine but when the vision in my right eye started to blur, I figured better safe than sorry and I fronted up to my GP.
The rest happened both blindingly quickly and painfully slowly. She set the wheels in motion. Made appointments with eye specialists, for MRIs, consulted neurologists and then finally, delivered the diagnosis we'd all been hoping I'd avoid.
I have relapsing-remitting Multiple Sclerosis.
Multiple sclerosis (MS) is a chronic autoimmune disease. For reasons unknown, my immune system has started to attack the myelin sheaths that protect my central nervous system (my brain, spinal cord and optic nerves). Without the protective coating, the nerve impulses can’t make it to their intended destination.
It’s like having rats chewing the wiring in your roof. Depending on which wire is chewed, you can not longer run the dishwasher or the socket where you usually charge your electric toothbrush doesn’t work any more. The more they chew, the less outlets work. What’s more, once the wiring is chewed there’s no way of repairing it.
At the moment my optic nerve is under attack for the second time this year. The rats have chewed off the myelin coating and the messages transmitted from my perfectly functioning eye aren’t making it to my brain. My vision is cloudy, sometimes short-circuited. Other areas of my brain and spine are also under attack. I'm tired, but not the normal mum kind of tired, bone-aching tired that sometimes leaves me incapable of creative thought past 10am.
The thing about MS is it affects everyone differently. You cannot predict the progress, severity or specific symptoms. The cause (causes?) and cure are yet to be found.
I wasn’t sure whether to go public with my diagnosis. I value my family's privacy.
But the thing is, we need to talk about MS.
Of the 23,000+ people in Australia living with MS (and the 2.5 million worldwide); three quarters are women. The majority of whom experienced their first symptoms between 30 and 35.
They’re me. They’re my readers and my readers’ mates and sisters.
More than that, statistics show that 1 in 20 Australians will be touched by MS through a family member, a colleague or a friend living with MS.
So I’ve decided to share my experience with MS here. Knowledge is power and perhaps reading about my experience might help others come to terms with their diagnosis or the diagnosis of a loved one.
The other reason I feel compelled to write about it is because I can. I'm fortunate not to have to choose whether or not to conceal my diagnosis from an employer; for fear of being passed-over for a promotion or winding up on the list of retrenchment candidates.
You can’t sugar coat MS and these posts will be a departure from the recipes you’ve come to expect from me. The MS posts won’t be for everyone; if you just came for the cake, I understand. I’ll do my best to keep the food posts coming too.
Finally, the internet can be a funny place and sometimes it attracts funny people (remember the bloke who became enraged about pumpkin scones?). So before I start this process, I want to set some ground rules.
1. I have, in conjunction with my specialists, GP and family, chosen a treatment plan.
This plan is based on science and research conducted by very bright people.
Please do not get in touch suggesting that I cure myself with a white-and-one-enema, a $2K GOOP-style green smoothie or a herb that only grows on the western side of northern facing rocks in valleys on the eastern side of Australia’s most southern island.
2. MS progresses differently in every person.
So far my symptoms are pretty minor, there are folks far worse off than me. I know this and I am grateful.
What worked for your cousin’s father-in-law’s sister’s friend likely won’t work for the next guy. Likewise, what (hopefully) works for me may not work for Eleanor in Accounts.
3. Don’t hypothesis about how I have brought this upon myself with my lifestyle or my behaviour on that crazy weekend on Dunk Island back in 2002.
The thing is, the cause (I believe likely causes) of MS is yet to be identified. Theorising about how I may or may not have brought my MS on does an enormous disservice to good people living with MS; most of whom I imagine have never been to Dunk. So please don't.
25 May is World MS Day.
Spread the word to show your support for MS suffers and encourage MS researchers across the globe.
Today is World MS Day. Is 2016 the year we finally kiss goodbye to MS? #worldMSday #kissgoodbyetoMSClick To Tweetenough about me. Has your life been touched by MS?
jeanie says
Sharing this - a friend I work with has just been diagnosed and its the unknowing that is the hardest of all.
Amanda Smyth says
You're right Jeanie. Not knowing how it will progress is difficult. I hope your friend has a good support network.
A x
Emily @ Have A Laugh On Me says
You are amazing. This is such an incredible post because it explains what MS is in relatable terms but also highlights a disease that so many people are, or will be, affected by. You've got this, I'm here on the sidelines with confetti, love and nothing but support. xxx
Amanda Smyth says
I'm becoming accustomed to this confetti treatment. Everyone should have an Em!
Ellen says
Until recently my only experience of MS was the primary school readathon held every year. It taught me a bit about the disease but given that was the 1980s I suspect we know a lot more about it now. Since then I've met a few people with MS - all women, all incredible strong, pragmatic women.
Much love to you Amanda. You're doing an important thing in sharing your experience. x
Amanda Smyth says
Thanks Ellen x
seana smith says
Oh my goodness Amanda, that's a shock. I'm so sorry to hear that you have MS, and so deeply admiring of the clear explanation you have given and the ground rules you have established. I hope people respect them. I respect you so much for being public and taking us on the journey with you.
I know many people who live with MS: my mum's penfriend of 60 years in Melbourne, our old neighbour when I was a child, my good friend's husband and several others too. It's more common in Scotland, I have read. A mum who swims here in Sydney has it too and is doing fine, up and down, but she is looking after herself so well, so she can look after her family.
There's great hope... and that hope lies in science. Thank goodness you have a scientific mind. And thank goodness you are a writer.... sending a huge hug to you. xxx
Amanda Smyth says
I've also read it's more common in the southern parts of Australia Seana. I'm sure it will all make sense when we put the pieces of the puzzle together!
Thanks for sharing too. xx
Sandra Kelly says
I too respect the hell out of you for going public and sharing your diagnosis. Thank you for the explanation and ground rules - all very informative and educational for those of us sitting on the otherside. I love that you have shared what's helpful and what's not helpful for sufferers. Sending big virtual squeezy hugs of strength. Xx
Amanda Smyth says
Thanks Sandra - I was feeling the virtual squeezy hugs yesterday. You're a great bunch of people. x
Nikki @ Wonderfully Women says
Congratulations on your strength to make this public knowledge. You have explained MS in a way anyone could understand and you will no doubt provide a valuable tool for others on this path. I wish you all the best for the future and that they continue ahead in leaps and bounds in finding effective treatments. xx N
Amanda Smyth says
Thanks Nikki. x
Nicole @ The Builder's Wife says
Thank you for educating me in a way I can understand. I'm right here with you sharing my love and support. Xxx
Amanda Smyth says
Thanks mate. x
Ness says
That sucks mate. But I love the way you've explained it and established some rules. Shits me how people think you can cure everything just by being positive or some specific diet. I'm glad you have a treatment plan in place and admire you for sharing your(dare I say it) journey (I hate myself). And yes, definitely keep on enjoying those cakies xoxo
Amanda Smyth says
Thanks Ness, did it make your fingers hurt to type *cough* journey?
Bec Senyard says
Thank you for sharing lovely. I don't think I know anybody personally who has been affected by MS. I understand it more now from your explanation. I'm here if you need to message me a prayer request. It doesn't matter if you don't believe. I will believe for both of us because I would like you to have a quality, long life with your hubby and your daughters. xxxx
Amanda Smyth says
You're a darling Bec, thanks for your message. x
Elisha says
You are a great person for doing this and increasing awareness and I love how you are going about it! My cousin 21 yr old male was diagnosed 2 years ago and is on great meds to control his. He lives life like anyone else and you wouldn't even know it! He too is open and honest about it and thats all you can really do. Keep well and I look fwd to your progress and all the great recipes!! How beautiful is that Em!!
Amanda Smyth says
She's a keeper for sure Elisha! 🙂
I hope your cousin continues to manage his MS and be well. x
Janice Jones says
Thank You for sharing and explaining MS in a matter of fact way Can I say you are amazing and I bet you shed ugly tears when you found out That's why I admire this post and you Honest raw straight to the point And That's why I love the online community there to support and lend a helpful ear Sending positive thoughts for the road ahead. XxX
Amanda Smyth says
Thank you Janice.
Anne@GritandGiggles says
What a great explanation of what MS is and does. I recall doing MS read-a-thon as a kid to raise funds from MS. Hopefully they find answers to those how, why and cure questions.
kit@lifethroughthehaze says
Amanda
Thank you for sharing your story. My only knowledge of MS is The West Wing. Thank you for giving me a better explanation than a tv show.
Like so many illnesses associated with the brain we really know so little about the brain.
In the meantime know that you have a lot of love out there supporting you
xoxo
Vanessa says
Autoimmune conditions are so specific to the person, I can very strongly relate 🙂 Good on you for having a strong action plan with your medical team xox
Lisa Barton-Collins says
Amanda I am so sorry to hear of your diagnosis. I wish you all the best in a successful treatment.
xx
Robyn Wood says
Hey Amanda, I'm a sporadic reader of you blog and have been living with the same type of MS for almost 12 years. Thankfully mine is very mild & the wonderful meds keep me healthy. I have every intention of growing old with my husband and living life to the full.
Initially I became a member of MS Qld, joined a MS research study & signed up to do Readathon talks in local schools. Knowledge really is power & being a spokesperson for the disease is one of the best things we can do. So thank you for being one as well! Changing the face of MS is so necessary. Thankfully, research is progressing in leaps & bounds & each year we step closer to the finish line. You have given me some inspiration to start the conversation on my own blog about living with MS.
The Qld MS community is wonderful & the staff at HQ are top notch and if you want to ever chat to someone living with it, don't hesitate to email me. It is scary & confusing at times, especially when it affects your sight (I had a run in a few years ago with a brain stem lesion!) but it is a fight we can win.
Big hugs to you and your family. xx
Cindy @Your Kids OT says
Amanda, thank you for sharing your personal journey. I don't know a lot about MS, but know that it can be a difficult journey. I pray (because I'm the praying type) that you will have the support and help you need for you and your family. Wishing you many many many years with your husband and kids.
Robyn Carseldine says
Hi Amanda
Thank you for sharing and explaining. We need to talk about MS and we need more research funding so science can find a cure.
Love your blog. Best wishes and hugs.
Wendy S says
So sorry to hear of your diagnosis, I was quite shocked to read it. Thank you for explaining it in such understandable terms. Will be thinking of you, hoping for the best for you. My daughter has an autoimmune disease also.
Congratulations to your family on the birth of baby David! (Catching up on a few posts after reading your newsletter)
Lauren @ Create Bake make says
I'm so sorry to read about your diagnosis, I can only imagine how tough the past few months have been for you all. Thank you for sharing your story and giving us a little more insight into this disease. Sending you big hugs and lots of love xx
Amanda Kendle says
Just catching up. Bloody hell. We have a family friend around my age (also a woman) with MS and she has had a really up and down road. I'm crossing everything crossable that this treatment you're having gives you a way better outcome than she's had and it sounds like it could. Thinking of you so hard.
Amanda Smyth says
Thanks mate. x
Kirsty @ My Home Truths says
I love your honesty and your positivity - sharing knowledge is so powerful. I hope you kick it's arse x
Bianca says
Just catching up. Bloody hell mate. The universe can be an ass. So glad you have an amazing support team around you. Sing out if I can help in anyway - write a guest post or anything. Sending big hugs and kisses your way xxxb
Carly Findlay says
Thinking of you Amanda.
Hope you're doing ok.
It saddens me that because the internet is sometimes a funny place, you have to justify your treatments and ask people not to make unkind comments. Boo to them. Let me know if you need anything. Lots of love xx
CarOlyn says
Hi Amanda. Just came across your blog via Annette Hill. I have MS too - diagnosed nearly 3 years ago at 43. From the lesions in my brain my neurologist said I'd probably had it for about 20 years but nothing had shown up. Like you, it started with optic neuritis - woke up after a nap and the vision in my left eye was blurred and then became increasingly so over the next few days. Went straight from the MRI to a steroid infusion - and yep, I remember the metallic taste! And I remember shedding tears! You are so right that everyone's experience is different so we have to not worry about the horror stories we may hear (my son has Crohn's - also auto immune - and we learned pretty quickly to ignore the stories on the Internet!) I'm now on gilenya and have had no issues in the last few years. Yep, some of my optic nerves have been permanently damaged but they have no practical impact on my sight. I hope all goes smoothly for you and that you continue living each day healthily. I suppose for me, there's just always that little bit of a reminder to make the most of everything my body can do because whilst I have great confidence in my medication, you just never know what the future holds xx
trish says
Thinking of you. Thank you for explaining so clearly though I wish you never had to.
I wish you everything and that you are circled by support and love.
pip says
Hey darling face.
I hope you're going okay and that your treatment is not too stressful or traumatising. What a bloody unexpected hurdle for you and your people. Love to you all... but especially you. Thanks for teaching me about MS. I didn't really know very much about it at all, but now I'm better informed. xx
Amanda Smyth says
Hi Pip. Thanks for your comment. I'm ten days post-treatment now and starting to feel a bit more like myself again. 🙂
Janet says
I've only just realised you had MS Amanda - I'm so sorry to hear this. Thank you for sharing - my hubby has had some weird symptoms and a battery of tests, fortunately in his case It seems to be the after effects of shingles, though stroke & MS were considered so I know a bit of how scary it can be x
Zanni says
Oh Amanda! I am only just reading this now! What a journey you are on, you brave and courageous woman. MS has touched my life a couple of times. One person was surprisingly young and healthy, and another was in her 60s when she came public with her diagnosis. I think any amount of awareness you can raise is good awareness. Big hugs to you, and hope you enjoyed your Christmas xxx
Amanda Smyth says
Thanks Zanni. I hope you're easily readjusting to life back home. x