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.
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.
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 Tweet
enough about me. Has your life been touched by MS?1