Boulevarde Dreaming

Tuesday August 29th 2017 (D-Day plus 19)

I woke up at 4am feeling weird and I lay in bed thinking, for the first time, that maybe I was going to be sicker than I had originally thought. I started doing some online research into living with MS- I am a big fan of Dr Google and I love to read as much information I can find.

Somehow I stumbled across the website for the Overcoming Multiple Sclerosis program (OMS) and I started reading. I got very excited about the early information that I found about the program which consists of diet, exercise, stress management, sunlight, Vitamin D, Omega 3 supplementation (and when needed, medication) and straight away I thought “I can do this!!”.

I sent my lovely Brooke a message to cancel my early morning personal training session, (Lots more about my great PT sessions to come later), and I kept reading.

I thought about staying home to read more but by 7am I decided to get up to go to work and see how my day played out. At this stage we had only told a handful of people about the diagnosis and we had decided that we were not going to make this info public. I was just going to keep up with my usual activities and keep my health issues private- a little different to how things are now!!

As it turned out this would be the last day that I would be able to get up and go to my fulltime school Psychologist job in this school year (in fact I wasn’t able to ever return to any fulltime position). It was also the last day for months that I would be able to drive myself anywhere.

It was a usual busy day at school and I had a meeting with a student and her parent in the last period and so I was the last person to leave the counselling offices. I packed up quickly after the meeting, my daughter came down to my office and we drove home chatting, listening to the radio- just an everyday, normal afternoon.

Wednesday August 30th 2017.

I woke up feeling dizzy and drunk. The room moved when I stood up and when I went to the toilet this was the first time I noticed that my razor, hanging in the shower, wasn’t behaving itself- it was swinging side to side.  I called in sick to work and spent the day at home thinking I had a virus. I kept reading about the OMS program and I explained a little to Dan about what I was reading and off he went to go and buy some flaxseed oil (for Omega 3 healthy fats) at the supermarket. I decided it was all worth a go! From this day I started on my plant based, whole food diet with seafood and now 8 years later I haven’t looked back.

Thursday August 31st 2017.

I walked Daniel to school and then tried to get in to see a GP at our local surgery. At this point I still thought I had a virus and that I would just need a few days off from work.

As we had just moved to the area I was a new patient and as I hadn’t previously arranged for my medical records to be sent through I wasn’t able to make an appointment. The receptionist gave me some forms to fill in and told me to contact my previous GP for the information to be sent through. All of these things just seemed way too hard for my frazzled little head and I cried all the way walking home and was a mess by the time I got home. I was having trouble focusing on things and even though I could walk in a straight line I felt like I had drunk a bottle of wine. The world in front of me was swaying and slightly blurry. The effort that focusing took was out of this world. I felt like I was in some weird parallel universe where everything was just a bit off kilter.

When I got home in my distressed little state and Dan saw me, he told me that he thought I was having a relapse. He called my Neurologist’s office and the Dr called Dan back within the hour. The Neurologist agreed that I needed to see him and that it sounded like I needed to be admitted into hospital for a round of steroids and another MRI. (My second MRI in 3 weeks!- remember that first one where I had been thinking that I needed to be able to survive it as I had a thought that I might need more in the future? I sure wasn’t planning to be back in that tunnel so soon.)

Friday 1st September 2017

When I look back at this time now I feel like I basically slept through September and it all started today. We were up at the hospital in the morning and after seeing my Neuro I was admitted into St Vincent’s Private Hospital for 5 days.

I had the MRI in the afternoon- I asked for the eye mask and used my nice slow breathing and I survived the experience again. There are so many places that your mind can go when you are trapped in a confined space with your head clipped into a cage-like coil (you lie down with your head in the bottom half of the coil and they snap the top part in place over your head)- it really adds to the whole claustrophobic effect. I am someone who avoids underground car parks because they feel too confined to me, so the MRI preparation process had me teetering on the edge of panic at times.

Then I was back to my room to wait for my Neuro to give the OK for the steriods to start and off we went for methylprednisolone round #1. During my stay the nurses kept telling me that a huge hunger would kick in while I was on steroids but this never happened. My face got very flushed and I developed a bit of ‘moon face’ but they were my main side effects while I was in hospital. The best side effects though were waiting for me later in the week when I got home.

After the first dose of steroids that afternoon my lovely nurse let me go out for a walk and to get a coffee with Dan. I needed Dan to hold my hand nice and tightly while we walked around the busy streets of Darlinghurst. I was a little wobbly and the whole drunk effect was exacerbated by the stimulation overload of noise, smells, people and the busyness of the city (which I usually love!)

The hospital food to match my new OMS program was amazing and I was eating fresh steamed fish and vegetables, stir fries and fresh fruit. I was also getting used to my almond milk lattes.

It all seemed OK until it was time for Dan to leave me that first night. I was very brave when I said goodbye but then I realised that it was just me alone in my room and it was scary and lonely and so confronting that I was actually quite sick. The unknown about this speedy progress of MS kept me awake for hours.

Black hole sun? Supermassive black hole? Neither Dan or my Neuro thought my suggested song choices were funny.

The next morning Dan returned and my Neuro popped in for a happy little visit. It was the visit that involved what I fondly remember as the ‘Black Hole’ conversation. The Dr explained that yesterday’s MRI showed that there were quite a few new lesions. He explained that he was surprised about this progression and that this wasn’t good news. There were also black holes that had appeared in my brain. Black holes are areas of permanent axon damage where a lesion used to be. They are spots of irreversible brain tissue damage. My poor, poor brain was still copping a continual beating.

Having an MRI showing black holes (plural!!) is not good news! The brain is amazing and can re-route and create new pathways for the messages to travel around but an increased number of black holes can lead to significant problems. I now send a regular shout out to my brain to say thankyou for  the ability to keep me going everyday while it has been healing and for it’s ability to find new pathways around damaged nerves and to work to remyelinate these damaged areas.

The Dr explained that it was time to get serious on starting to work on this out of control MS.

It was time for Tysabri (Natalizumab) power!!