The day after diagnosis (D-Day +1)


So the day after I was diagnosed Dan and I headed up to the ER at St Vincent’s Hospital as had been suggested. I had packed my bags for a 5 night stay and had arranged for the kids to be with their Dad. We arrived and handed over the letter from my GP. We didn’t have to wait for too long until I was in a bed with a drip, on a heart monitor and waiting for the Neurologist to come to meet me. (These were the first of numerous ‘sticks’ that I would have over the coming months- so many blood tests and infusions and cannulas! I have learnt which are my best veins and which ones only work sometimes. Hands hurt the most!!)

We waited and waited- and he never arrived. Eventually they called him and I was able to speak to him on one of the nurse’s mobile phones. He explained that he didn’t do visits to the hospital on the weekend and it was a misunderstanding between my GP and his registrar that had landed me in hospital in Darlinghurst (two hours from home) on a sunny old Saturday.

He was apologetic and told me that as the numbness had been happening for 3 weeks the steroids wouldn’t help me at this stage. He told me he would be able to see me on Tuesday in his rooms- and then he suggested I go home and enjoy the weekend.

So I was unhooked from the drip and the heart monitor and we headed out to Darlinghurst for the first of many lunches together in a funky little café.

When we got back home we were a little lost. Yesterday I had received this huge diagnosis and now here we were back at home on Saturday night. We had a very quiet night.

We invited Dan’s parents, Carol and Andy, over for coffee the next morning and told them about the diagnosis and that we had been to the hospital but wouldn’t see the Neurologist until Tuesday. Obviously this was a huge shock and one of those conversations that you hope to never have to have.

Later, Dan and I sat out on our back grass looking out at the lake and watching people looking carefree and walking past along the cycle way. My plan for the coming week was to just continue as normal with the exception of Tuesday when we would go to Sydney together. And continue as normal I did. I worked each day at school and also did 10 hours of supervision sessions. It was a huge week and looking back now I wonder how I fronted up to work on Monday!

Tuesday came around quickly and we drove back up to Darlinghurst and had brunch together in another funky café. Then we went to meet the Dr. He looked at my MRI’s- showed us all of the lesions and pointed out the accompanying inflammation. It was a little overwhelming and I needed to sit down while he explained all of this. He did the usual neurological exams. “Touch my finger, then your nose”, watched me walking in a straight line, watched to see how my eyes were focusing and tested the strength of my hands. I explained that I was noticing improvements with the  tingly, numb fingers on my right hand. He asked about work and I explained all of the hours and tasks I had been getting through in recent weeks. His advice was to continue doing my usual work and activities.

He advised that we could try a wait and see approach and briefly talked about possible medications. This conversation was so brief and the prospect of medication seemed so far away into the future that he didn’t even give me the glossy brochures that I would eventually become very familiar with. I did have some blood tests, including the test to check whether I was JC virus positive, which turned out to be pretty lucky as the results take three weeks to come in. The blood sample for this test is sent to Denmark for testing. My blood travels overseas more often than I do!

The Dr. reported that he thought we would be able to meet in 6 months to discuss medications which Dan and I thought sounded great. Unfortunately MS had other plans and we would meet again much sooner than this.

It was just 16 days before we would see him again.


Thanks for reading,

Simonne xx


Get me out of here



Tuesday October 31st 2017

I’m sitting at home on my deck overlooking the lake.

It is lovely, but I am not meant to be here.

I am not usually at home at lunchtime on a Tuesday.

This is not my life.


Get me out of here.


I was meant to be at school today seeing students, attending meetings, talking to staff and having a lunch break where I would eat my sandwich, answer some emails and maybe pop out in the sun for a quick walk around the harbour.

I was supposed to finish my work day and then come home where I would see a couple of clients or supervisees in my brand new purpose built office before heading down the driveway into our new home for dinner with my husband and my children.

I am supposed to be busy with a certain level of hecticness that I was used to and that I had been enjoying.

This is my 9th week of being at home. This wasn’t meant to be how my life goes, but here I am.

There are parts of this that I am loving and parts which break my heart. Parts which bring me joy and parts that I cry about in the shower. So much of what has happened for me is out of my control but my first instinct was to find some parts that I could control, that I could make choices with and to still be able to feel like I was able to be me.

I have been told that I need to find a new normal and to say goodbye to the old me as she doesn’t exist anymore. I don’t know about this. I am still her, but my outlook has changed and my perspective is different.

New normal yes, but I will stick with the original me- Version 2.0.

I like her.




August 2017

I was pretty sure it was MS. I had googled my symptoms but the first GP I saw asked me to stand on my tip toes and asked if anyone else in my family had ever had MS. As my answer was no and that I had been able to stand still while I balanced on my toes- he told me that it was unlikely to be MS and for me to come back in two weeks if my symptoms were still there.

A week later my initial symptoms of tingling in the fingers on my right hand had spread down my right side and in the morning of August 10 2017 when I was shaving under my arms I realised that my right underarm was completely numb. I couldn’t feel myself dragging the razor under my arm. Kinda scary really!!

My daughter had an appointment with our usual GP and I was able to make an appointment for her to also see me. Dr G listened to my story, we chatted about some photos of my recent wedding and she gave me an MRI request form. She then called the MRI office and was able to get me in for an appointment on the same day.

I went off to work and did my usual day’s activities- resisting the urge to google MRI’s. I knew vaguely that it was like an X-ray but that I would go into a machine. At 5pm I headed to the local PRP office. I sat calmly waiting to be called and then the technician came out to get me. Let’s call him Dave. I walked through the corridor and he started giving me instructions to get changed.

Then I saw the MRI machine. I paled instantly. Dave asked if I had taken a sedative. When I replied ‘No’ he stated that ‘this should be fun’. I was wearing a jersey dress and stockings so he asked that I take my bra off and just check that anything that I was left wearing didn’t have any metal zippers and then I could leave my dress and stockings on. He explained that I would be more comfortable in my own clothes.

As soon as we walked into the room he handed me an eye mask and when I lay down he told me to put it on. He talked me through the process and that he would be in contact with me through the speakers to let me know how long each part would take.

He left the room and I felt the bed move and knew that I was heading in.

Through parts of the MRI he instructed me to not swallow. Try this at home.

Spend 2 minutes at a time not being able to swallow and I bet you will fixate on how urgently you need to swallow. I bet you are swallowing right now!


I have been a Psychologist for 18 years and during this time I have been preaching the benefits of deep breathing, relaxation and meditation. I have to admit that up until this precise moment I was a complete fraud about this as I had never really used these techniques by myself. I believed that they could be helpful and I had sat with clients while we listened to relaxation exercises but hadn’t ever put this into genuine practice this for myself. I had a moment in the machine where I thought to myself- ‘this is now or never’. I had a passing thought that I might need to have other MRI’s in the future. It all kicked in and I breathed my way through that first MRI experience.  I was in the machine for an hour and a half and I survived.

On my way home driving in the car I was thinking about whether things were about to change. Looking back now I wish I could have made that drive and that whole night stretch on forever. These were some of very last real moments of being carefree before the diagnosis.


Friday 11.8.17      D Day

I had just returned to my desk after lunch (I had eaten my sandwich and had a walk around the harbour) when my phone rang and it was Dr G’s receptionist asking if I could come in to see her today. I made a time for after school.

When I arrived at the office the receptionist told me that I couldn’t have an appointment with the Dr today as it was her day off. One of the other staff said – ‘No Dr G is coming in for this one’.

Oh shit.

When she told me that the MRI showed 40 lesions on my brain and one on my spinal cord and then told me that I was right and that it was MS we both cried.

Turns out it was 100% likely that I had MS.

She gave me a referral to the Neurologist and told me that he was on call at St Vincent’s Hospital in Sydney over the weekend and that she had spoken to his registrar who suggested that I attend the ER as soon as possible to receive steroids. She and I agreed that I would go home and tell my husband about what was happening and to then go to hospital the following day. She offered to call him for me and also gave me her mobile number to call her over the weekend as needed.

I drove home from the appointment via PRP to pick up my scans. It is a miracle that I made it home. Driving yourself to an appointment where you may receive a life changing diagnosis is not recommended. I didn’t want to go home and tell Dan the results and I ignored his calls on the drive as I knew that I couldn’t drive and talk to him about this. He came down the driveway when I drove in and I started crying. I told him it was MS and he could see that this wasn’t great news but didn’t know much about the disease at the time. I explained that we would need to go to Sydney the next morning. That conversation and the whole night felt surreal.

Little did we know what was ahead.