an INVISIBLE disease

When you look at me, you wouldn’t think I have a life-changing disease like multiple sclerosis. When you look at me I imagine you see a smart and capable woman. You see a mother who is also a successful scientist. You see a generous friend who is also an athlete. You see someone who is fulfilled by life and wanting to give back. That’s all me. What you don’t see is someone who has limited feeling in her right arm and tingling and numbness extending all the way down to the toes on her right leg. You don’t see the loss of hearing in her right ear and the constant ringing from the damage to her auditory nerve. You don’t see the fatigue as she continues to achieve as much as she can each day. That’s all me too.

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HOARDING & why everyone is doing it

You’ve seen it. Someone in the supermarket that has a trolley overflowing with groceries you’re certain they don’t need. Meanwhile, as you reach for that pack of pasta you feel an urge to grab more than the 2 packs you are now limited to. You rationalise that it would be fine for you to take more because you aren’t hoarding like those people are, or you missed out last time, or you are sure you would share your supplies with others in need if they asked. Yet, your gaze falls back on that overflowing trolley, on that person with a pack of toilet paper under each arm and you judge them, you label them as selfish, as a panic buyer, something you convince yourself you aren’t. But is that true?

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WORKING from home during covid-19

My research group was proactive in their approach to the evolving Covid-19 pandemic. As of the 16th of March, we decided to stop all fieldwork and move into working from home for all staff and students, which was quickly followed by our University following suit. We have coordinated with the students to adjust their projects as necessary, essentially shutting down our lab and moving online to protect everyone as the pandemic worsens in Australia. Whilst I am seeing that many people are unsure how to handle such a situation, I am really enjoying being able to work from home. This looks like it will be the norm for the next 6 to 12 months and whilst I am unsure that David and I will stay employed in this time, creating a new and what feels to be a more wholesome routine for our lives is a very welcome change. If you’ve moved to working from home, are practising social distancing, or are in isolation, there are a few things I think are really important to do.

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finding the POSITIVES in a pandemic

Over the past few weeks, even months, I have seen a lot of negative energy on the rise and understandably so. We are facing a life-changing pandemic. In Australia people are panicking and that is partly due to the effect of the virus, partly to the insecurity of jobs and the ability to provide for yourself and your loved ones, partly due to the overall uncertainty of what our future entails – though it is becoming abundantly clear a global recession is on the cards, and partly it is due to our government appearing slow to act and inconsistent in the messages they are sending, if they are sending any at all. These times are worrisome. For someone with MS the thought of getting Covid-19 and there not being a hospital bed available for me is a little terrifying. But, there are a lot of good things to take advantage of at this time and actions you can take to make your experience the best it can be during times of such uncertainty.

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LIVING with ms as a partner

Shortly after the arrival of our son, my Partner, Eliza, was diagnosed with multiple sclerosis. For the previous few months I had noticed that she was having difficulty walking straight, would lose her balance at random in the hallway. Vertigo was our laymen diagnosis. When it didn’t go away, and instead started to get worse, I insisted that we go to the G.P. Eliza has a history of head tramua from a childhood of accidents which she blamed irregularities on, but this was a little different, more acute and more pronounced.

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THIRD times a charm – tysabri infusions

When I started disease modifying drugs to control my multiple sclerosis it was pretty straight-forward. I was on what is considered the easiest intro drug, Tecfidera. It’s 2 tablets a day, one in the morning and one at night, simple. But my body wasn’t responding as we had hoped and my MS was still active, so we stepped up the game and moved to hospital administered infusions. This wasn’t a decision that came without considerations and it has taken time to adjust to the change.

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EXERCISE and multiple sclerosis

A relapse is a scary experience. For me, I lost my ability to walk properly without falling over, hearing in my right ear, and strength in my right arm. I thought it was permanent. After about a month those symptoms abated and I could hear, lift and carry my son, open things, and walk again. Not simply walk, but I could run again. It took time to feel confident in the movement, just as it took time with bouldering to feel that my arm would support my weight as it once did. That relapse was a reminder to me that the strength, flexibility and overall fitness of our bodies should be something we strive for, not only for the obvious physical benefits but for the deeper biological benefits as well. For people with MS, it can reduce the severity of relapses, improve quality of life, and help regain control and movement and thereby maintain independence for the rest of your life.

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SHOULDER your suffering

There are some hard truths in life, the biggest, and simplest, is that life is hard. This should not come as a shocking revelation. I would go so far as to say that at times you have protested as to how hard life is, either to you, or to what it is “doing” to your loved ones, your family, your friends. I’ve seen people take this realisation and let it suffocate them, let it stop them in their tracks, have them wallow in self-pity for how hard their lives have become. At one stage in my life that was me too. We’ve probably all been there, and sadly there are some people who never leave that state and the potential of their lives pass them by.

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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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