BEFORE my diagnosis

This is a post I wrote before my diagnosis in early 2019, when I was in the midst of tests and uncertainty. One of my recurring experiences was people telling me that I would be okay and not to worry. This felt incredibly dismissive and diminished my experience. After thinking on this I decided to write a post about it to share with others in the hope that they would understand why telling someone that “it’ll be okay” isn’t necessarily helpful.

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FINDING support

Getting a diagnosis of multiple sclerosis is a hard pill to swallow. The future can feel more uncertain than it did before and you can get caught thinking about all the “what if’s“. One of the biggest fears I’ve had to deal with is that of being a burden and feeling alone in my journey. Does that sound familiar? It is one of the things we need to work past in building, maintaining and accessing our support networks.

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WHAT is ms?

“I have multiple sclerosis, because I thought why stop at one?”

Tim Ferguson

If you’re anything like me when MS was mentioned as a possible explanation for my symptoms, I was searching my brain to remember what that stood for. None of the doctors or technicians during the investigation stage elaborated on what MS was, it seemed to be a given that everyone knew, including me. Of course, I could have asked what it meant at the time but I was in a cold sterile room hearing some serious news, that I would need full body MRIs for a definitive diagnosis and they would organise those for me as soon as possible. I was swamped. There is nothing like a concerned doctor pulling strings to get you into a packed MRI facility for a scan immediately that makes your heart race and your brain not focus on little things, like what MS stood for. After all, everyone else seemed to know, I didn’t want to sound ignorant. It sounded familiar and I vaguely remembered fundraising events when I was at school. All I knew for sure was it’s serious, so I figured I would look it up later.

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my DIAGNOSIS story

In September 2018 I had my first baby, a little boy we named Maximus. I immediately fell in love and all the things I had worried about before he was born vanished. Everything felt so right and so easy. I experienced the expected things like postpartum depression and terrible troubles with breastfeeding but despite the random tears and breakdowns, and the incredible pain and guilt trying to feed my baby boy, I felt so happy. But 3 months later things changed.

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QUESTIONS for your neurologist

Unfortunately, multiple sclerosis is often misattributed to other conditions when symptoms first appear as it shares so many characteristics of other often benign conditions. My MS was almost missed when my first relapse was diagnosed as vertigo. If I hadn’t pushed to keep investigating my symptoms, I would have seen a physiotherapist to treat vertigo and as usual for relapsing remitting MS my “vertigo” would have been treated as my relapse corrected itself within a few weeks. My MS could have been missed.

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MONGOLIAN memories

When I first told people I was planning on travelling to Mongolia I was met with a lot of shock and disbelief. I was brave to travel there alone, apparently it was an unusual location for me to choose and not many people had wanted to travel there. For me, it was a given, it had always been on my list of places I wanted to see and after travelling there I have an idea why.

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SOLO in Sichuan

It’s been a few months now since I visited China and I’ve been a bit slow in getting my thoughts down. I will start by saying that China isn’t on my “visit again” list. At least not any time soon. It’s not that I hated my experience or anything to that level, but it wasn’t as enjoyable as I had hoped. I didn’t thoroughly enjoy my trip, but I am glad I went. The experience was meaningful, some of the people were wonderful, and the mountains were mystical.

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