Finding our new normal

I’m through accepting limits

‘Cause someone says they’re so

Some things I cannot change

But till I try I’ll never know

There’s no fight we cannot win

Just you and I, defying gravity.

 

Indina Menzel- Defying Gravity

NOVEMBER 2017

I shopped and brought myself new clothes, including a bikini. This was so freeing and then I continued by packing up my old clothes to advertise on Gumtree. I won’t be welcoming that extra weight back again.

 

I turned 44 and I enjoyed my birthday. Instead of being at work on my birthday wishing I was at home- I went in to work and had morning tea with my beautiful team and got to catch up with some other work friends as well. It felt weird to be at work. It was my first time in my office since I had walked out one afternoon back in August. Our team talked about some planning for next year and we agreed that for Term 1 I will try to do one day each week on a Monday. I felt so relieved after this- like any pressure to get back to something that I don’t yet feel capable of doing had been taken away. One day a week seemed like a safe and gentle way to start.

 

In the evening I popped a bottle of Veuve bubbles and Dan and I had a glass with dinner. I opened a new box of Waterford champagne flutes that we had been given as an engagement gift and we used these. Time to use more of the good china and drink our nice wine I think!! We had salad and fish tacos with flathead fillets that Dan had caught that day. Dessert was fruit salad and mini vegan snickers cheesecakes made by Mikayla. All beautiful, fresh and made with love.

 

I had a beautiful lunch with Kim and Jig a few days later and we all got a bit giggly after some wine. Kim made an OMS friendly cake which was YUM! We were enjoying our luxurious midweek lunches together- absolute bliss!

 

After my Tysabri dose a few days later on Friday 24th Dan and I had a night in the city and met Dave and Kirsten for dinner and drinks. I had soda water and didn’t even feel sorry for myself- there is no way I could have a drink after being pumped with the purple apron drug that day.

 

On the Saturday Dan and I walked through the Botanic Gardens and took a photo at Mrs Macquarie’s Chair and sat in our favourite spot near the Opera House. It was 1 year since we had gotten engaged here and it was very cool to sit there together today. So much has changed- buying a house together seemed like a pipe dream back then and we have had so many changes in this time. On my birthday I posted on Instagram that in the past 12 months I have had a boyfriend, fiancée and husband and that they have all been the same great guy.

 

It felt good to be out with Dan and as he said – it was a taste of normal for us. We had been staying in nice hotels and going out for amazing dinners together for years. This had been how our relationship started and I often say that he set the scene for our lifestyle from our first date. Back then we had stayed two nights at the Sebel Pier One and went to Est. for dinner. We walked around the city and around to Woolloomooloo wharf for a cocktail via Circular Quay for lunch at the Oyster Bar. We share a love of sitting and chatting while sharing yummy food and having a drink. Over the years we have stayed in countless hotels and eaten in amazing hatted restaurants as well as happily having cheap yum cha together in China Town.

 

We had needed to get away together and to spend time away from the jobs at home and the angst and uncertainty of this diagnosis and the ongoing implications unravelling for us.

 

Reading back over what I have written so far makes me cry. I still can’t believe this is real. Some parts of this time have felt too good to be true. Some are out of my worst nightmares. I have times where I can’t believe that I really have MS. It can’t be real- it is too awful to be real. I look back at July and August 2017 and try to pinpoint when all of those the lesions may have started to appear but it is all tangled with stress and so many changes for us in such a short period of time.

 

I wonder now if I was genetically predisposed to developing MS and that the stress of early 2017 had then added to this. The trauma of losing my Mum in 2013 had been huge. I wasn’t expecting to lose her and it was so sudden in the end. I remember telling her the morning she died that she couldn’t go yet because I still needed her to teach me how to be a Mum. She told me I would be OK and I have been but I still miss her. She would have loved being with her Grandchildren and being a part of their lives. I sometimes wonder if that if this will happen when I die. Will it be like I my spirit is suddenly ripped out of this world and my family are left reeling and feeling lost. I worry that our house wouldn’t feel like a home anymore.

 

When I was out walking this morning, I was thinking about doing my morning walk as a 60 year old woman. I feel so relieved when I have these spontaneous thoughts as they give me hope that I will still be alive and mobile in 15 years time. I am sure that as I feel that my health is improving and I can see progress I will be able to be more hopeful that this will be my reality. I don’t intend to be in a wheelchair and be dependent on others. The thought of needing help to do everyday things scares me.

 

The months I spent not being able to drive were an eye opener. I was reminded of how often I would casually grab my keys and go out without always needing a reason or having limitations on what I could do or how far I could go. Now (September 2018) I still try to stay fairly close to home- I can drive to Wollongong and to Kiama but wouldn’t feel confident driving to Sydney. I have previously driven to Melbourne and Brisbane and would regularly take the kids to Orange to see my sister.

 

I have had friends with MS tell me that about situations where they have lost eyesight during the day and driven home from work with limited vision or suddenly not be able to walk after moving normally earlier in the day. I have been lucky so far that any new symptoms have come overnight so I have some idea in the morning of my current health status. It would be very scary to suddenly feel significantly different during the day while you are out and about doing daily activities.

 

I can understand now how people become afraid about leaving the house. There are some days where home is where I feel safe and I have everything I need and if I don’t feel well I can take care of myself. The longer you are at home the easier it gets to just want to stay here. I am still not bored of being home. I love my days and having time to do things.

 

These days bring me peace.

 

Thanks for reading,

Simonne xx

Birthday Month

November 2017

This year I will relish every candle on my birthday cake and I will be grateful for turning 44. I am now only 7 years younger than my Dad was when he died.

I am reassessing all of my goals and where I am going. Every day is a new day for me of trying to rebalance my body and to find my previous good health and my brain power.

I will keep writing even though I don’t know if anyone other than me will ever read this.

 

11th November 2017

So today I feel fine. I feel like me and I am thinking like me.

I just commented to Dan- “I think the MS has gone away”. How crazy that this comes and goes with no predictability or reason!

No headache, no weird aches and pains. I can think clearly and I sat here and typed for two hours.

I walked this morning and then went back to bed for cuddles. I lay in the sun to listen to my meditation and I did some washing. I’m drinking a coffee with caffeine and I’m not feeling jittery. I feel 100% fine.

For now.

I know that the physical symptoms come and go and I am always so relieved when they go. But when they are gone I know that they will come back. I have been practicing mindfulness and being in the present and most times this helps me to chase away the angst but there are also times where it lingers.

My outlook now is so different. I wake up every morning and open my eyes and I am grateful that I can see. No blurry vision, no diplopia (double vision). I stand up and I am grateful that I can feel my feet and that my legs can hold me up. I walk to the bathroom and am grateful that my razor hanging in the shower continues to behave itself and I can read the Love is…. sign that we have hanging over the bath. I go to the toilet with ease and am super grateful for this. I go back to my room and get my clothes on to go for my daily walk.

I go outside and put Bonnie on her lead and we walk out to the lake where we head along the cycle path behind our home. I chat to the people that I see- some regulars that I might stop to talk to and some that I casually greet as we pass each other.

On a good day I get out to Boonerah Point and on other days I turn around earlier. I try to walk for at least 45-60 mins as well as doing a weights session a few times each week.

I love the walk home- it is one of my favourite parts of my day and I love seeing our home from across the lake as I turn back to my family. Some of my other favourite parts of the day are drinking my morning smoothie and getting into bed at the end of the day.  It’s the simple things that bring so much happiness.

I get home and make Dan a cup of tea and then I start my morning ritual. Vitamin B12 and D3 supplements, 30ml of flaxseed oil with a shot of pineapple juice and my breakfast smoothie- banana, cacao, almond milk, chia seeds, cacao nibs, ice and water. If I am still hungry I have a slice of grain toast with avocado, sliced tomato and smoked salmon. I am trying to have this regularly now to help me to stabilise my weight.

I have changed to having one coffee every 1-2 days and sometimes if I have noticed that I have been feeling more anxious I make myself a decaf coffee in the plunger instead. I now add a splash of almond milk- long gone are my skinny latte days. I had previously been drinking at least two large and very strong coffees every day before getting sick.

Since starting following the Overcoming MS (OMS) program I have not looked back, I have not contemplated eating something off the program and I feel that I was born to eat and live this way. It all sits so beautifully with me. I have roast lamb in the oven- it smells great but I don’t want to eat it. My daughter and her friend have made a caramel slice this afternoon and it looks amazing but I don’t want to eat this either. I will not waver on my journey to health.

I am happy to have changed my lifestyle for my health and I have really appreciated something that I read early on-: Nothing tastes as good as being able to walk feels. I will do whatever it takes to get through this but I am not fighting it. As George Jelinek, the creator of the OMS program says, “there is enough fighting happening in my body”. Rather I am trying to rebalance my body, to reduce inflammation and to help to give my brain and body the nutrients that they need to restore, re-myelinate and to stay as healthy as possible in the future. My family- my husband and my children will know that I did everything I could and that I tried everything in my control to get well and to stay as healthy as possible.

 

When Mum died I jumped on the kids trampoline in the afternoons and listened to Florence and the Machine and thought and cried and bounced. Then I went in to cook dinner. I have always had a positive outlook and an unshakeable ability to just get on with things. I also don’t take crap. I have no tolerance for people who don’t/won’t/ can’t offer me the same consistency and respect that I give to them. I have walked away from relationships and from long friendships and I don’t ever look back. It is a stubborn personality trait but has been a very long term protective factor for me. I don’t stay in situations that are not working- I will try and I will work hard on getting through difficulties but I have my limits and I can cut my losses and let go. I am not sure where this came from but I do accept that this is me.

 

My Boulevarde Dreaming Instagram account for connecting with my MS community has been so incredible for me. It is different being able to have contact with people experiencing the similar craziness as I am- even though MS is often called the snowflake disease as there are so many different signs and symptoms and everyone with a diagnosis has different experiences. We do have some common features and it can be very reassuring to talk to others. It can be so hard to share with friends and family about what is happening for me. It is all so strange and unknown to me so it must be really weird being next to me. How could I ever really explain what this craziness feels like? My advice to others is to work to stay connected even when you feel like things are falling apart. Hold on to the people around you who care and are willing to help. If you don’t think they understand- keep explaining. Ask for help. Tell them you love them and that you need them.

My children will know that I did everything that I could. That I tried everything in my control to get well and to stay as healthy as possible. I also continue to research what I can do to help them to stay healthy and to avoid an MS diagnosis in their futures. This will always be my legacy to them.

I have had a couple of conversations with people in the past few days where I have explained about MS and have admitted that it is an incurable neurodegenerative disease which often leads to disability. While I am saying this out loud I still can’t believe that this applies to me in any way.

I have read about people meditating in front of vision boards and I don’t think that I need to do this. I have never wavered from seeing my future. I do imagine a long and active life for myself. This is partly my strong belief in the OMS program and my hopes for the combination of my medication and all of the positive things I do everyday to zap the power of this disease.

I will have a future where I can think for myself and to be independent and mobile. I would like the opportunity be able to get older and to age gracefully.

I am working really hard for it.

 

Thankyou for reading my story,

Simonne XX

 

The shifting wind, the changing tides, the boats and jet skis, the fishermen, the people riding and walking past. I love it all.

Our whirlwind year.

On November 26th 2016 Dan asked me to marry him.

I was pleasantly surprised- we had been together for 5 years and had settled into some nice patterns. We both had our own homes and would spend time at both. One of my favourite things to do was to pack my bag on a Friday afternoon and head to his place. He would cook and do all the jobs and I felt like I was having a little holiday each fortnight.

Blending two families is tricky. We all have our stories, habits, expectations, routines and goals. These rarely match up on their own and it takes time, effort, trials and errors. My children had experienced the separation and divorce of their parents and were trusting me to keep them safe and protected and the five of us had settled into our own routines together. Having Dan initially start to stay with us changed things and suddenly my attention was divided.

On our engagement day we went out for lunch at Mr Wong in Sydney and he started talking about fresh starts and making things permanent. I sat there thinking ‘OMG- he is going to propose’. Then he didn’t. He suggested a walk around the harbour and we walked past a band playing and he said we could stop but that he had wanted us to keep walking. We headed to a spot where we often went to in the Botanic Gardens near the Opera House. We sat there for a while chatting and then he asked me and then he gave me my beautiful ring. I called his parents and Andy’s response was “About time- welcome to the family”.

So 2017 became the huge year of our wedding, selling two houses and buying one together. We should have had a baby (our 7th) to keep the themes of new beginnings going! Our speed hump was different. When I first got sick and was suddenly MIA at school one of my colleagues thought I was pregnant. Not surprising since I had gone missing just after returning to school from our honeymoon. My response to him?  “I wish”.  And it is true, if I knew the universe thought this mix was missing something huge I would happily have had another little one!

 

When their dad and I had first separated, the kids and I moved into a unit in Wollongong near the harbour. This felt like a holiday in many ways. We could see the water from our balcony and we were close enough to the beach and to town that we could walk everywhere. After 8 months my rent was going to be increased and my Mum invited us to move back in to my childhood home with her. The plan was to help me to have some time to save up for a deposit for a house. That was late January and then she got sick suddenly and just five weeks later she died on March 4 2013.

 

She had been being treated for cancer for 3 years and was doing well- even her specialist was surprised to hear that she was gone. He told me that he had thought she would be able to continue with her treatment and live for many more years. This was the saddest time of my life and I am pretty sure I really haven’t dealt with losing my Mum.

 

Later in the year I purchased the home from my siblings and had hoped that it would be a place where they would come back to for Christmas and for us to continue to all have a home base connection together. That this hadn’t happened after 4 years was a way that I gave myself permission to sell and to move forward.

 

We bought our beautiful new home after selling one of our homes and before the second was even listed for auction. On a sunny Saturday in May we attended the auction and after a heart stopping race we walked out as the new owners. Daniel cried as he knew this meant changing schools. I was so happy later in the year, at the end of Term 4, when he told me that he was glad we moved and glad that we bought the house. I was so relieved as he had come to this realisation on his own after making friends and seeing the positive changes for himself. He had even been having friends pop over after school- this had never happened in his whole career at his previous school.

 

Moving day was locked in for Monday 19th June 2017 and we had packed up both houses and were all ready for the move. Lining three house sales and settlements to happen around the same time is tricky but we had managed to get everything sorted. Then Dan’s house sale didn’t settle on the scheduled day. We had weeks of stress and nightmares waiting to see if we needed to put it back on the market. Eventually we decided that our plan was to move out of my house on the day it settled and into Dan’s house. We all packed a suitcase and took the minimum furniture needed. We needed to arrange a delayed settlement on our new home and there were days of unease with us worrying about how we would be financially able to complete the sale.

Finally the purchasers stopped playing around and gave us a settlement day with 48 hours notice. We booked the removalists again and finally we were in.

 

None of this stress helped me. Around this time I was having headaches every day and I had started telling Dan that I thought I had dementia- I often couldn’t recall conversations and I was forgetting to do routine things. At the time we were putting everything down to stress and even now it would be impossible to differentiate what was stress related and what was MS starting to niggle.

 

Finding things in my new kitchen? Forget it. So many cupboards and drawers and the girls had done a great job of unpacking the kitchen so I hadn’t seen where everything was going in the first place. Some mornings I needed extra time to orient myself to where I was and what I needed to do- we had lived in three houses in a  2 week period so surely some of this was to be expected……

 

 Water

I come back to the water. I always have- from my first breakup where I headed to North Wollongong Beach and (cringe!)  sat on the sand singing “I will always love you” by Whitney Houston. I love the flow, the symbolism of cleaning, the views across the water and the possibilities that lie underneath the depths.

 

We are now living on the lake with amazing waterfront views and I am grateful every time I catch sight of the water. Whether it is the first sighting in the morning or when I walk into the lounge room during the day and the wind has shifted, or late at night when the lights are twinkling across the lake. I feel safe here and I feel connected to our home. Dan and I have talked about how we both instantly felt like this was home as soon as we moved in.

 

We had been talking about living on the water and when we had started talking about the possibilities it had seemed out of our reach. Then we started to look seriously at the property market and what the reality of us selling both homes might look like. This was a huge change. I had gone from being fiercely independent and being proud of this. I had gotten to a position where I knew I could protect my children- I was working full time and running a part time private psychology practice and my steady income was our safety net. I was now choosing to let someone else into this. People around me noticed this and commented on the healing that was involved in this- I was able to trust another person and in doing this I was letting go of past hurt and able to trust that this person wouldn’t hurt me. It’s been great so far and I’m so glad I let him in.

 

 

Thankyou for reading my story,

Simonne xx

 

 

 

Lessons in slowing down

 

25th September 2017

So after a whirlwind seven weeks since the diagnosis I had now seen my Neurologist more times that I wanted to count, been in hospital twice, been hit with steroids twice and was now spinning towards my second dose of Tysabri.

I was 100% focused on getting well but back at this time I was trying to do this so that I could get back to my full time job. When I think about this now I can see how ridiculous this thinking was. It shows how far I needed to come with my thoughts and with my acceptance of what this diagnosis may mean in the longer term. I really had believed after that first Neurologist appointment that this was going to have a minimal impact on all of our lives.

 

The Physical Effects

After the initial tingling in my whole right side I was now left with just three fingers on my right hand that still feel like they were being stabbed with razor blades whenever they were touched. The rest of my hand still gets tingly and numb when it’s really cold or if I’m really tired or when I haven’t had enough water to drink. Driving to hospital the first time I felt so sick from the movement and driving home from the second admission I needed to cover one eye to be able to see the road while Dan was driving. I was also experiencing Lhermitte’s sign (pronounced Ler-meets) when I bent my head down. This was a sudden buzzing sensation like an electric shock that goes straight down my spine. I needed to make sure I completely emptied my bladder a couple of times every day as this was a bit sluggish and I was trying to avoid further bladder infections. I also needed to go to the toilet every hour without fail.

I was tired ALL the time, I still felt dizzy (sometimes when I was already lying down) and I was very easily confused by little things that shouldn’t really have kerfuddled me. I could be feeling OK but then within minutes could be completely wiped out and need to go and lie down. I drop things, knock things and spill things.

When I get really tired my legs get clunky and I feel like I’m walking like Frankenstein. I’ve had swallowing issues and had weird numbness in my face and in my mouth. I’ve had chest pains and irregular heartbeats and also really fast heartbeats. I get strange headaches in parts of my head that have never ached before. The list goes on and on. I also understand that I am so in tune with my body now and I seem to notice every twinge and tweak of pain.

 

This week was Mikayla’s 16th birthday and as the kids had been staying with their Dad they were dropped over for a few hours. It was so nice to see them but I felt so unwell and I was so disappointed that I hadn’t been able to plan anything nice or to buy many presents for her.

The next day lovely Leah dropped in to see me and I also finally got to meet my new local GP. She arranged for me to have an ECG in her office as I had started to have some chest pains. My beautiful Aunt Heaven also came to see me and brought some fresh organic vegetables and fruit and herbs for my OMS diet program.

It was around this time that we started telling people about what was happening for me. I messaged my siblings and let my Aunts and cousins know.

All of this was a blur.

 

 

Friday 29th September 2017

We headed back up to St Vincent’s Hospital IBAC for the second dose of Tysabri. Again we were there for the hour for the infusion and then the hour for observation. We decided to try a new sushi restaurant in Darlinghurst and this quickly became our new favourite.

After all of those months of going up every four weeks we have a bit of a routine- in for the infusion (we go up earlier if I need to see my Neuro) then out for lunch then I usually sleep in the car on the way home. We have a quiet, early Friday night then I wake up on Saturday morning feeling like a superhero. I wake up and bounce of bed and go for my walk and then can get out and do the grocery shopping, sometimes I do some gardening or get out on the water. One Saturday morning Dan and his Dad,  Andy, were laughing as I got my cossies on for a swim in the lake then because I had seen a blue swimmer crab swimming in front of me I went back up to the house looking for a net. I really thought I might catch that crab in a little net.

I then have a slow Sunday and then, particularly in the first few months, I would be rocked by side effects on the Sunday night.

I was off work from August until late January 2018 so I wasn’t needing to worry about being well enough for work. I had the luxury of being able to take the time to rest when needed.

I started to really love having some time to myself- I can think, I don’t rush things, I can try to be organised (I even signed school notes before they were due!).

I am trying to remind myself to notice things and to slow down. I haven’t slowed for such a long time. I was addicted to busy- too much paperwork and needing to wake up at the crack of dawn to finish things was something that I had a perverse enjoyment of. I don’t miss any of this. I had been putting so much pressure on myself to do too many things and setting expectations which were huge and now I can see that they were unnecessary. My years of overachieving and overdoing things were crazy. It was time for me to refocus, rest and recuperate.

 

Thanks for visiting,

Simonne XX

Double vision!! To be honest, X-Ray vision would have been more impressive…..

Staring at the blank page before you

Open up the dirty window

Let the sun illuminate the words that you couldn’t find

 

Live your life with arms wide open

Today is where your book begins

The rest is still unwritten

 Unwritten- Natasha Bedingfield

 

 

Tuesday 19th September 2017

I was sitting on our back deck in the morning watching the birds flying past in pairs and didn’t think anything strange was going on. It wasn’t until I saw identical twins riding past on their bikes with excellent synchronicity that I realised that I was seeing double. I looked up at the mobile phone tower on nearby Mt Warrigal- Yep today there were two. There were also two posts in the water in front of our house where I knew there was really only one. It wasn’t too bad inside the house with things up really close- it was more longer distance things that doubled.

 

Since my first hospitalisation I had already spent weeks at home experiencing odd symptoms happening- weird aches and pains, strange headaches and numb and tingling spots in my body. I now knew to wait 24 hours before worrying too much and for those first few days the double vision came and went. My first conversation with my Neuro wasn’t until Thursday and we agreed to wait to see how I was going on the following Monday. The following day when I woke up the double vision was there all the time and was starting to cause me some grief. Eyes get so tired when they are trying to focus and then my poor little brain was feeling even more frazzled.

 

I spoke to the Neuro on the phone again on Friday and we agreed that I would go back up to St Vincent’s Private on Sunday for more tests. He was talking about another MRI as well as a lumbar puncture (LP). I had successfully avoided an LP up until now as the first MRI had shown evidence of one prior lesion as well as the current ones and this was all that was needed to show the ‘multiple’ episodes needed for a diagnosis of MS. I later realised that at the time he was more concerned about the dreaded PML. An LP test would show more information about what was happening in my spinal fluid. We eventually agreed that he would wait to see the results from the MRI and then I would only have an LP if absolutely necessary. He did try to sugar coat the procedure a little by telling me about the ultrasound technology that was available to help guide the needle into my spinal fluid. I was never really sold on the idea. A few months down the track when I was having an infusion in the IBAC my Neurologist’s registrar was doing an LP on a patient. Dan and I listened in quiet horror to what was going on over on the other side of the curtain. Hopefully I will continue to avoid this ‘small’ procedure.

 

The second hospitalisation because of double vision was less luxurious than the first. I was on the other side of the hospital looking out towards a different part of Sydney.I could see two Centrepoint towers from my hospital bed. They were sitting there together side by side with one slightly higher than the other. One of my Instagram friends, Leigh, posted a picture, just after I was hospitalised, of a painting that she had done which represented her experience with diplopia. I loved the way she had been able to express this strange visual difficulty.

 

I shared a room with another patient, Fleur, and we had a blast. A bit different to my little tantrum when I first arrived in the room with my head firmly up my own butt and feeling super sorry for myself. (While reading back over this I just asked Dan if he remembered my little dummy spit- not my finest moment!!)

 

I had arrived at the hospital hoping to have a single room again and was told on admission that I was in a shared room. I was already begrudging the fact that I was back AGAIN and was feeling disheartened. We weren’t sure if these admissions were now going to be frequent occurrences. Two relapses in a three week period- was this our life now? Up and down to Sydney with weeks at a time in hospital?? I was away from the kids again and it was Mikayla’s birthday week so it all felt extra awful. I also knew this time what the side effects were likely to be and I had only just started to feel well again since the first time.

 

When we first walked into the shared room Fleur looked tiny and so unwell on her side of the room and I just walked in and lay on my bed with my back to her and cried. After a little while visitors started coming in to see her and it got noisy in our room. I told Dan to go- it was Sunday afternoon and he had a long drive ahead of him. When he left I called my sister in law, Kirsten and let her know I was back in hospital and then by the time I had dinner and watched some TV it was time for sleep. At this stage I was still exhausted each day by 7pm. I tried to get to sleep but the beeping from the machines in the room drove me nuts for hours and I tried listening to music (the soundtrack for the musical ‘Wicked’) turned up really loud. Eventually I asked one of the nurses for ear plugs and I managed to fall asleep.

 

Within 5 minutes of waking up the next morning Fleur and I were great mates. We chatted about a million different things and she was a beautiful person to have the chance to get to know. When her husband Doug came in a few hours later he nearly cried with surprise. Fleur was in hospital for an operation for Trigeminal Neuralgia which is nerve related facial pain. The operation was significant and she had only just arrived in our shared room just before I had the previous afternoon. She had been in the ICU all week after the delicate operation to unwind nerves from around parts of her brain and in her head, behind her ear. Our excited conversation that he walked in on was the first time he had heard her being able to have a conversation in over a year. She had also been having trouble eating in this time, brushing her teeth and had been avoiding all social contact with people.

 

This was my first lesson in detaching my head from my own butt. There have now been so many stories that have been shared with me about personal distress and triumphs and it has been very special to be listening to people with amazing stories of survival. I am just one of many people who became sick suddenly, received a life shattering diagnosis, are putting everything into recovering and who are learning to take each day- minute by minute.

 

When my Neuro came in to see me on my first day and asked how I was feeling I laughed and asked which Dr had asked me that. Less funny to him!! He did say again- that all of my jokes aside he was quite concerned about what was happening for me. In the end the results from the MRI showed a few new lesions (again not great) but that none of them were in places in the brain which would cause the diplopia (the medical term for the double vision).

 

His verdict was that this was ongoing inflammation in my brain causing these issues. The gadolinium dye that I had intravenously during the MRI had lit up many places where the inflammation was still hanging around. He explained that it was like I was recovering from being in a car accident where I had received a traumatic brain injury. I did feel slightly frustrated that it took so many MRI’s, two hospitalisations and two doses of steroids for him to tell me this. The pressure I had been putting on myself to recover and to do things even when it hadn’t felt good had been huge because I had a vision of what my recovery should look like.

 

It’s funny being in hospital just for steroids and tests. I wasn’t really sick enough to need much attention from the nurses but I was feeling scared and generally unwell and my vision difficulties ruled out reading and watching TV for very long. My eyes were so tired! I had each dose of steroids in the morning and then was on my own until observation times and the next dose.

After the round of steroids was complete I was sent home to recover for a few days before returning to have Tysabri dose #2. My next infusion was planned a little earlier than my scheduled monthly dose to hopefully kick start its effects.

 

Home again we went.

 

Thankyou for reading,

Simonne XX

All aboard the Tysabri train.

SEPTEMBER 2017

Tuesday 5th September 2017- Day One of Tysabri.

In such a short period of time I had gone from hearing that we could wait and see if I needed medication to suddenly needing to quickly agree on a drug to trial.

I never did get a chance to read the glossy, holiday destination style, pamphlets for Tysabri. My Neurologist, Dan and I had a chat (mainly about the possible risks) but also including the hopeful benefits and then I was booked in.

I didn’t really feel that I had much of a choice at the time- the MS seemed like it was spinning out of control and the ongoing damage needed to be stopped. The night before the first infusion I got very panicky and teary when Dan left and a beautiful nurse sat with me, listened to me and reassured me. She was so kind and gentle and her response was exactly what I needed. I was so scared about starting this drug. I had been reading about the risks of PML and the disability that it could cause. It all felt like it had escalated so quickly.

 

A little bit about Progressive Multifocal Leukoencephalopathy (PML).

Yes, it as bad as it sounds…..

PML is a rare and usually fatal viral disease of the brain, caused by the JC virus. Hence the JC virus test that I had at my initial specialist appointment (the blood sample that travelled to Denmark).

The JC virus is harmless except in patients with weakened immune systems due to illness or immunosuppressive medications. The symptoms are tricky as they tend to imitate common MS symptoms such as clumsiness and changes in vision, muscle strength, speech and personality changes. PML has a mortality rate of 30-50% within 6 months and survivors are left with serious neurological disability. Scary stuff!

 

Back to the first ‘Tysabri Tuesday’:

The plan for today was for me to be discharged from the private hospital and to go over to the public hospital next door for my first infusion. I had had a huge five days with five doses of steroids, an MRI and the black hole conversation.

It wasn’t all terrible though. Dan visited me every day and we always got out for a walk around Darlinghurst. I also had some lovely visits from friends. While I was in hospital I told two of my friends about what was happening for me- One was my close friend Leah and the other was my old school friend Rebecca after we had started chatting about some posts that she had put on Facebook. And god love them- they both made plans straight away to come to see me in hospital. My beautiful sister in law Kirsten also came with her family and she and I were able to do some chatting while our husbands and my nephews went out exploring. Visitors in hospital are little blessings in an otherwise long and boring day!!! Visitors bring presents too and (sometimes almond milk lattes) and I was grateful for every minute they spent with me.

 

When we arrived at the IBAC (Immunology and Infectious Diseases Unit) for the infusion on that first day we had no idea of what to expect. What an experience we were in for!!

Before the infusion started I signed my life away, and before each subsequent infusion I have to check the list of symptoms of PML and agree that I have discussed any new symptoms with my specialist. The list gives me a laugh each time when I have to ask Dan if he has noticed me acting irrationally or being clumsy. (Yes and Yes!- but probably not PML related).

The kindness of the staff that we meet really stands out. They have so much patience with all of their patients who come and go during our two hour visit. When we were there for that first infusion they had a volatile and  emotionally unstable patient who they gently cared for until he had received his medication, been fed and had been able to be calmed down.

I cried when we arrived. It was so overwhelming- it had been a massive few days in hospital. That drug that was going to be added straight to my veins? None of the staff went near it until they were covered with thick purple gloves, a thick purple apron and with a protective eye mask. After two hours (an hour of infusion and an hour of observation)  we were free. I felt OK physically and was even starting to get used to the constant cannulas.

We had lunch in Darlinghurst before heading home. There is a photo of me looking shellshocked and with the caption: “Home now- time for some recovery for the rest of the week before I return to work”. I really thought I was heading back to work on Monday!!!!!

Boulevarde Dreaming is born

While I was in hospital I spent hours on Facebook and Instagram and I found support groups for people with MS on Facebook. I also found my amazing Instagram community. I decided that I would start a new Instagram account to start linking up with my people. At the time I had no idea how big my group would become. The first contact I found was the amazing Staying Healthy with MS. She was a fantastic first link to all of the hundreds of people that I have now found who are all around the world and living with MS. Through my Instagram connections I have found women living near me and have been able to meet up with a couple. With others we send kind messages and support to each other around the world- we keep an eye on each other and give pep talks and even post cool things to each other (through real snail mail!!!). Why Boulevarde Dreaming? I just wanted to get home and spent so much time looking through our recent wedding photos and photos of our lake that I made myself a little homesick.

 

What kind of evil superpower is this?

I enjoyed the first couple of days at home resting especially when Kim came to visit me. I looked like I had been through the ringer and we both acknowledged this. I lay on the lounge while talking to her and I loved the normality of our chat.

I walked with Dan and Daniel to school each day and then by the end of the week we were walking a bit further together. It was all looking pretty good.

Friday 8th September 2017

The side effects hit me by 7pm. It started with nausea and chills and I shook for a couple of hours. Then the nausea continued- it felt like I was riding waves of nausea, with fatigue and a complete lack of appetite. I lay on the lounge until Sunday afternoon when I finally started to feel better. By this stage I had lost 6 kilos within the past two weeks with the significant changes to my diet and then the evil side effects over the weekend.

And so my nesting for recovery began- I spent the next week up and down and in and out of my little nest in the loungeroom. I slept, nibbled on food (mainly fruit) when I could stomach it and I started to watch health documentaries. It was lucky that I started to settle into my space because this would be where I spent the next few months resting and recovering.

I kept calling into work to say I needed a few more days and then this became the rest of Term 3. I still felt drunk and the world was still on its off kilter lurch. Then just before the school holidays started I developed double vision and we were back to where we started- off to see the wizard again.

 

 

 

Thanks for reading!

Simonne XX

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