The protective factor of forgetting

IMG_1149 2

 

 

I felt disheartened when I found out that an old spinal cord lesion has reappeared. Coupled with some new symptoms it was looking like a little relapse had snuck up on me. My Neuro and I agreed to scare it with some steroids so off Dan and I went to the local private hospital for three days of IV steroids.

How bad can steroid treatment really be? I knew that I recovered eventually last time.

I had forgotten…

The vile feeling of coming down from the high dose of methylprednisolone leaves me feeling hungover, beyond tired, emotionally unstable and trapped in the memories of how sick I had been back at that early diagnosis time in 2017.

Suddenly I was back to feeling emotional, uncertain and not being able to remember what wellness really feels like. My thoughts go wild, my appetite disappears and the ups and downs are relentless. I really had forgotten what was on the way.

As usual in the midst of this there have been little bright spots, a new friend visiting and bringing lunch, a friend bringing dinner over for our family, an extra long yoga/ meditation session and the time to stop and rest. I am so grateful again for my recovery, my lounge room full of flowering orchids, our sunny deck to lie on and the peace that the days bring.

I will not push myself to get back on track this time. I will be gentle and kind to myself. I will walk and swim and do what I can when I can. I have been getting in and out of bed for days. Up and down- I feel OK so I get up and do a few things and then I hit the wall and head back to my room. My next dose of Tysabri is just around the corner next week and there is some more recovery that needs to happen here before I can be ready for the next medication hit.

The long days are back. Staring at the walls or out the window, not being able to concentrate on a book or a story or even a TV show storyline. Feeling emotional and getting teary when watching an episode Kath and Kim because my emotions are so wobbly. The dark thoughts that float back in and the bewilderment of how, what, when did this all happen?

Tired, sick, sad. What a way to finish the week.

 

 

And then, slowly there was a shift and ten days after the last dose I have now had two days in a row where I haven’t needed to sleep during the day. I was back for Tysabri today and so glad that there was time to let things improve in their own time.

As they always do.

 

Thanks for reading,

Simonne XX

 

Two years of life with MS

IMG_0414

August 11 2019:  The 2 year anniversary of (knowingly) living with Multiple Sclerosis.

If I knew back then what I do now, I could have been more confident in my body’s ability for healing. I could have had more trust in myself and allowed myself all of the time I needed to get well again without judgement.

Those early weeks and months are still a blur but I have some very fond memories of conversations and clarifying moments that I had with others. I will always remember the genuine responses of friends as well as the disappointment I felt when I was let down by people that I hadn’t expected would respond in the way that they did. I have said it before -MS in my life has been a mixed bag and for sure has been my best enemy.

The uninvited arrival of MS in 2017 came at a time where I was ready to focus on new things and was welcoming some happy changes in my life. It was also a time where I was physically unhealthy- carrying extra weight, not sleeping and with a relationship with wine that was bordering on obsession. I was working excessive hours each week with no plans to slow down and my life focus had gotten all muddled with ridiculous goals and expectations for myself. While I knew in theory about balance and self-care, I was not very good at reflecting on or changing my own choices.

My days now have come to a manageable pace with a nice balance that I often reflect on with much gratitude. I would never have predicted this switch but I am grateful everyday for where I am now, the people I have met and the lessons I have experienced along the way. The gentle balance of working a few days a week with the very important job of maintaining my current health and wellbeing seems to be working. My exercise and stretching routine takes a couple of hours each morning and then my meal planning and ensuring that I hit nutrition targets takes some more time. The rest of the day finds me reading, resting, walking, working and scrolling (often more than I planned too!). I have regular physiotherapy, exercise physiology and psychology sessions and it is reassuring to have professionals keeping an eye on my progress.

Over the past month I have realised that there have been more improvements with my health- I haven’t been sleeping during the day and I can stay awake later at night. This morning I slept in until 8am for the first time in forever. I still find myself very fatigued mentally and this is so frustrating. I appreciate the positive physical changes but I struggle with the ongoing cognitive challenges. Forgetting, confusion, getting muddled and the weird unexplainable things I do continue.

My last few MRI’s have shown stability and no evidence of disease progression and I do not take this lightly. The uncertainty is real but my hope is strong. I have regular contact with amazing people living with MS who encourage and inspire me. My family are here with me on our rollercoaster ride and at the moment the ride is gentle and none of us are covering our eyes or throwing up.

Thankyou for reading and thankyou to all who have checked in on me, asked my kids how they are going, spent time chilling with my family or have sent loving thoughts and kindness our way.

Simonne XX

Momentum

IMG_6754

I move all day every day. I walk and walk and I rarely sit still. I walk fast and I just keep going. When I was out walking a few days ago I was aware of how much easier it is to keep going once the momentum kicks in.

I think that this is an excellent description of how I am living my life at the moment. If I stop there is a risk that it will be harder to get moving again so it easier to go with the forward flow. I feel like I have created this flow and I can pinpoint many times where it would have been easy to stop and not put the effort in. So many crossroads I have navigated so far.

 

I cut my hand recently and needed stitches. It’s OK now and has healed well but those first few days were challenging. It didn’t hurt but I knew that I needed to keep it dry and protected and when I had the dressing changed every few days the nurse reminded me that I wasn’t meant to be using it. At all…..

She even saw me in the supermarket during the weekend holding my shopping list in my hand- written on a single piece of paper, and was surprised that I had thought that this was included in the ‘not using it’ instruction.

 

So the week where I was bandaged and incapacitated was a challenge. It helped me to realise that I am terrible at sitting still and letting other people do things for me. Which in turn motivated me even more to keep moving and making sure that I am doing everything I possibly can do to stay healthy and mobile. I’ve recently added Physiotherapy and Pilates into my health and wellbeing regime and I also got back in the local pool to swim laps again.

 

I had my six monthly Neurologist appointment last week and Dan and I were happy to realise that we didn’t really have anything that we needed to talk to him about. For every other appointment I had taken a list of questions that we needed answers for. This was a great reminder of how far my health has come.

 

This must be what stability with MS is like. It sure has taken awhile to get here!

 

Thanks for reading,

Simonne xx

It’s official- it is MS. What next?

dan and i canoe

Early diagnosis: That time when a whirlwind met the planet’s craziest rollercoaster and then together they headed to topsy turvy land.

I’ve got a few ideas to share!!

Read everything.
I googled everything- every new medical term, healing and recovery stories and healthy lifestyle tips. This was how I found the Overcoming MS program in those first few weeks.
I have read about celery juice, flaxseed oil, happiness, mindfulness, my spirit, the China study, how brains heal, changing my thinking, magnesium, how not to die and so many different diets which all totally contradict each other. If you read widely then you can make your own informed choices.

I watch lots of documentaries, listen to online meditations and keep my ears out for interesting new research and information.

I still listen regularly to one of my favourite meditations for healing that I found on YouTube. It takes me back to those earlier days where everything felt so uncertain and it was a relief to be listening to a strong message about having the power over healing in my body. It is bliss to lie down, chill out and soak up those positive vibes.

 

Ask lots of questions
Be prepared for your appointments (there will be lots of them and most of them will cost lots of money!). I take a list and I stay there until I have been able to tick everything off my list as have being answered. Dan often prompts me to keep asking my questions as it can feel exhausting and infuriating- especially if your persistence is met with resistance from professionals.

 

Explore other options if your current situation isn’t working for you
If there is a time in your life where you need to feel a personal fit, this is it. I recognise that I need to feel a connection with individuals and to feel that my professional team are working with me on achieving my personal goals. I started to feel like I was banging my head against a brick wall in my appointments with my Neurologist so I found a new one closer to home and made the switch.

This also applies to your work situation- are you expecting yourself to stay with a full time position that is hard enough to juggle with family life when you are well and with all cylinders firing? Can you make adjustments to have flexible attendance, reduced hours or different duties? Can you arrange accommodations to help to have your work role suit where your health is right now? Don’t be scared to ask for changes. One of the best things that my work place has done for me was to give me access to a car parking space near my office. After the mind frazzling drive to work in the mornings, not having to look for a car space before heading in to start my day has been magic.

 

Work out your why?
Why do I want to stay healthy? Who is important to me? What are my goals- now and in the future? How am I going to keep going?
Write your thoughts down, make lists, mindmap your ideas. It can be very reassuring to be able to look at these reminders on the days where everything seems so hard.

 
Be kind.

This is so important that I have written a whole blog post on it!  At the end of the day everyone has a job to do and we never know what others have been through just to get to being in front of you in this moment. Be polite and say thank you- often!

 
Get your support crew sorted
And stay committed to seeing them. There may be times where you don’t feel well enough or don’t feel like you have the energy to stick to plans but sometimes this is when you need it the most. Tell your friends and family what works for you and ask for help when you need it (also then accept the help. This can take some practice!)

Facebook and Instagram can be a great way to connect with other people like us, who are living with MS everyday. These are important forums for support, care, advice, information and a sense of connection.

 

Take time out for recovery
Depending on how your body and psyche have taken the hit from MS, this takes time and patience. I kept feeling so frustrated that my body wasn’t getting better to the timetable that I had set. It wasn’t until my Neurologist finally explained that for me it was like recovering from a car accident where I had sustained a traumatic brain injury. Aha! That’s why tying my shoelaces and thinking about more than one thing at a time was such hard work. I took the pressure off myself and let those months of recovery roll along.

Rest when you feel tired. Stay in bed when you feel like you have been hit by something hard and unrelenting. Eat a piece of fruit if you don’t have the appetite for a whole meal. Being gentle with yourself now will payoff in your journey to recovery.

Tomorrow is a new day.

 

 

Thankyou for reading,

Simonne XX

 

PS. This photo was from one of our first adventures out after I had spent months on the lounge recovering from August to December 2017. It was such a relief to be out on the water. Some freedom!!

Twenty Four Hours

IMG_9006 2

What a difference a day makes.

 

Sitting here on the lounge, it’s 5pm and I am in my PJ’s but I am awake. Yesterday at this time I was curled up in the hammock in my work clothes having a snooze and a little cry.

 

I have just finished my second (and last) work day for the week and I am feeling good. I did not feel good at 5pm yesterday.

 

I had had a day where I felt like dementia was setting in. I was tired, confused and having trouble remembering the simplest things. It had started earlier in the day and I noticed it while I was walking Daniel to school. I was frustrated because I had realised that I had forgotten to do a simple thing on Friday afternoon. I had meant to go back to the chemist to pick up a script that I had dropped in earlier that day. I know that this seems like a little thing. Something that everyone does now and then.

 

When I do something like this it instantly starts the anxiety about disease progression and possible cognitive decline (also the risk of PML but I won’t let myself dwell on this). I am scared about the things that I am not remembering or noticing that I am missing.

 

Driving home from work yesterday was hard work. If I have ever wished for a Tesla self driving car it was then. Getting home from work was hard work and the evening stretching in front of me before I could go to bed felt like an impossibility to cope with.

 

Today I feel fine. I had a great day at work where I was able to juggle more than one thing at a time, I chatted happily with work friends, I managed to string sensible sentences together and I even cracked some jokes.  I popped out for a coffee with a work friend in the afternoon and told her a little bit about these different days I have had.

 

Yesterday I stayed fairly quiet as I was busy concentrating on looking like I was holding it together, I was taking extra time processing information and my attention span was a little dismal. I got through my day but I knew that I was slower and less switched on than usual.

 

I will try to remember for next time that a lot can change in 24 hours. It’s the nature of the beast that is MS.

 

I can do this.

 

 

 

 

Kindness Counts

hospital photo

 

I have met so many people over the past 16 months and no matter what their expertise is or their knowledge or the possible impact of these for me, the most important thing is their kindness.

From my beautiful GP, Dr G, when she provided the initial diagnosis, to regular blood tests, ringing up to make appointments, popping in to pick up a script, sitting in a hospital ward for treatment, having an MRI, having a chiropractic adjustment, to going to a therapy session. The most important thing is the kindness shown to me. I will never forget these moments of connection when someone has taken the time to just be kind.

This whole thing is scary and while I look so brave I am often shit scared and the kindness counts.

From my first meeting with my Cardiologist, Dr S, where he listened to my story, did some initial examinations and lined up more tests. As we were leaving he hugged me and said “leave the heart worries with me- the MS is enough for you to worry about”.

To Dan who realises that my silence in the car driving to another MRI appointment means that I’m really just not looking forward to the lonely 90 mins ahead of me in the tube and that taking me out for coffee afterwards will restore some sense of normality.

To my Psychologist who gives me the space to talk through whatever it is that I need to process in the session- just sharing her wisdom, some balance and kindness as needed.

To my Chiropractor and his awesome receptionist who show genuine care for how I am going and who keep an eye on my progress with return to work and in turn share a little bit of their lives with me.

To my OT who gives me amazing arm massages while checking in with me about the ongoing saga of my right hand, associated strength difficulties and the flow on impact on my posture and general strength.

To my Exercise Physiologist who is helping with the flow on effect of my hand difficulties on my posture. She helps to develop new strengthening and stretching activities each session- remembers my stories from previous sessions and asks for updates. The kindness, the care and our laughter make these sessions super cool.

I have read lots of books about the connection between medical specialists and patients and there is such a strong link between having a positive relationship and better outcomes.

I am a huge believer in my own professional practice in learning from people who are actually experiencing the difficulty. My Neurologists could learn so much from me (and their other patients) if they just asked and listened. I am often told- “that isn’t MS” or “that isn’t from Tysabri”. Yet my Instagram friends report similar symptoms and experiences. So while maybe not evidence based or from a journal-  it is instead from real life, from people battling this crap day in, day out. We are the experts really.

 

Since meeting my GP, Dr C- whose office is walking distance from our new home, we have developed a great working relationship. In one of our first appointments she told me that I am the expert in managing this MS and that she will always listen to what I say is going on and will help me to work it out- and she has. She reassures me with the weird health niggles and listens when I bring new information about the Overcoming MS program, she comments when I’m looking well and gives care and kindness when I turn up looking like I have been through the wringer.

 

Kindness counts and can really be the main thing another person needs from you today.

 

Thanks for reading,

Simonne XXX

Be still my beating heart

thumbnail

Christmas  2017

I was in contact with some of my friends in my MS community during Christmas Day and also sent messages to my siblings. I was pleased that they all responded-  this is the first Christmas that I haven’t seen any of my own family.

 

I called my Aunty Heaven on Christmas Eve and it was positive talking to her. They will all be staying locally in January and we will catch up with her and my cousins and their children in this time. She has been an excellent support to me this year and I appreciate the strong connection between us.

 

My friend Leah visited with her son on the weekend before Christmas and we had a deep conversation (as we often do) over a glass of wine. She brought me a gift that she had seen and had felt guided to buy. It was a metal butterfly and she and I have had many conversations about butterflies representing my Mum for me.

 

 

Christmas Day

I had such a good Christmas Day- it was my little family and Dan’s parents and Dave  and Kirsten (D and K) and our kids and it was a relaxed and happy day. We shared lots of bottles of expensive bubbles over the day and I’m sure this contributed to my feeling so chilled.

 

Thomas had driven the kids home after their family celebrations with their Dad on Christmas Eve and he stayed here ready to wake up and open his gifts from Santa with his siblings. He popped back in on Boxing Day to have lunch and was able to help Daniel sort out his PS4 and new games. I love watching them talking together. Daniel looks up to his big brother- so cute.

 

I woke up at 4.30am on Christmas morning feeling energetic and ready to start the day. I spent time meditating and then went out early for my walk. It was very quiet on the lake track -most of my usual friends must have slept in for Christmas. Oh the serenity!!

 

During the day the kids went out in the kayaks and took bikes out along the cycleway and the ladies went for a nice walk up to the ski park in the afternoon. Dan and I have talked about how happy we are that our house can be enjoyed by others and that it seems to expand to fit our visitors comfortably.

 

Dan cooked mud and blue swimmer crabs in a szechaun sauce for dinner and it was an experience we shared with D and K sitting for an hour slowly eating our way through the bowl of crabs Dan had caught in our backyard. It was a great end to a busy day.

 

Boxing Day

The girls went out shopping this morning and bought me my favourite Clinique products that have been out of stock for months. I am proud that they are learning the benefits of surprising someone with a spontaneous, heartfelt gift.

 

I had woken up at 1am this morning feeling awful. My heart was racing and I felt really weird (weirder than normal!). After an hour of lying quietly and then walking around the house I turned the light on and woke Dan up. Then I started shaking- this is a common side effect for me a few days after having a dose of Tysabri. Even though I started to realise that it was something that I had experienced before I was convinced I was going to die. I was rueing the decision to keep drinking those bubbles all day and I was convinced that I had poisoned myself drinking so much and so close to a Tysabri dose.

 

I have been thinking lately that when I die it will be Mum that comes to take me with her. I can picture her sitting and waiting for me and then quietly taking me away with her. I was so convinced that I was going last night I went into the lounge room to see if she was waiting in there. I kept thinking “this is it- this is how it ends”. I went in to kiss Daniel but didn’t want to freak Mikayla and Nicola out so didn’t go into their room.

 

After a while it started to settle and I dozed and eventually fell back asleep. I didn’t go out for my morning walk the next day and didn’t have much of an appetite. On the upside- I have slept on and off today and hopefully will catch up on some of the sleep I have missed over the past few crazy days.

 

When Dan and I talked about it he said that my breathing had been quick too and I am wondering if it was more anxiety related and that the combination of drinking alcohol, being tired and not drinking my usual water all day had impacted this.

 

Anxiety and managing the instant impact that this can have is so new to me. It comes out of nowhere (last night I was asleep and dreaming when it started). I realise that if you don’t recognise what is happening you can start to think that it is medical rather than psychological and that starts a spiral effect. During the day if I notice that I am starting to feel unsettled I start a mediation if I am at home or I focus on some positive thinking and calm breathing if I am out. I have found that catching it quickly has worked so far.

 

I am feeling very relieved that I was here for Christmas and that it all went well. Dan and I have had more and more happy experiences with Christmas over the past few years and these have started to restore our ability to enjoy the day when it arrives.

 

This was my first non-meat Christmas and I survived and at no time was I tempted to eat anything off my Overcoming MS (OMS) program. I even experimented with dairy free salmon dip and vegan gingerbread. I don’t feel like I missed out on anything and it is a reminder of how seriously I am taking all of this. I was always someone who ate a lot at Christmas and who happily tried everything. It is funny to now need to be a fussy/ particular eater. Dan and I had gone out for breakfast on the weekend and after finally finding simple toast and tomato on the menu I had to send the first plate back to the kitchen because they had buttered the bread. I had a moment where I had to laugh again while I drank my decaf latte on almond milk- Who am I and how did I get here?

 

For the record – the butter free toast and tomato were delicious. I wasn’t even tempted to taste Dan’s egg and bacon roll!!

 

I have said to Dan that I am grateful that he has been very supportive of my dietary and lifestyle changes. My whole family have been and I wonder now what they would do if I sat in front of them with a plate of meat or something deep fried. All good guys- not going to happen!

 

I accept that these are lifestyle changes that are here for a long time. As I also plan to be.

 

Thanks for reading,

Simonne XXX

 

Coming up in future episodes:

We meet the Cardiologist because those heart issues go on and on,

I have a run in with anemia,

we meet the new Neurologist,

and the NDIS ball starts rolling and the next bumpy ride starts…….

My nest.

November 2017

Week 13 of sitting in my nest- my comfortable little spot on the lounge. I’m pretty sure there is a clear indentation of my body permanently built in now.

I spend a fair bit of time here. It is comfortable and safe and I have everything I need in arms reach. I can sit- I can lie down. I can talk to people- I can sleep.

I watch youtube clips about healing and stories about recovering from MS as well as general health documentaries, including lots about veganism. I have enjoyed looking for recovery and healing meditations and I meditate every day. Sometimes this is first thing in the morning and sometimes it is after lunch during my quiet time.

Today I was listening to music while doing some jobs and one of the songs talked about taking life by the horns and making the most of it and I thought about what my days entail- I am not really doing anything ground breaking sitting here in my lounge room!!  I again needed to remind myself that I am in recovery mode and that I need to be patient and just take each day as it comes. I am safe and happy and getting healthier every day.

 

What might 2018 bring for me and for my loved ones?

Dan has started to do handyman jobs for friends and is enjoying the planning and getting busy with jobs. This work is such a great fit for him- choosing his own hours and not being accountable to anyone else. He has great ideas and always finishes jobs perfectly. I hope that this work can continue for him.

I have enjoyed reconnecting with school friends and I am looking forward to having some of the girls over for a lunch to catch up.

I am a simple person. I like nice things. I am grateful for time that people spend with me and for all the things that people do for me. I like to be comfortable. I love our new house and the lifestyle that we have started to be able to create here. We have shelved some of our plans for renovations and changes around the house. Dan and I had already ordered some new furniture before I got sick and it has been so exciting as these pieces started arriving. It has been cool choosing things together.

Nicola and I spent time in hospital on Sunday to get a niggly health concern for her checked. During our extremely long wait she talked about her thoughts about our lives flashing before our eyes as we died- she talked about what if our experience now is that flashing process. Her thoughts were that it would take more than an instant for your life to flash. She talked about people going towards the light when then die and also when they are born- what if we are on an ongoing journey where we die and are then reborn into our life again? She described having a strong sense of déjà vu at times. It was an interesting conversation, it is cool when we can see our children becoming individuals and thinking for themselves.

 

DECEMBER

I went into work today to see Mikayla receive an academic award. It was very nice to be there as a parent and to be feeling OK and to enjoy the experience. I was able to talk to some of my colleagues at the end and it was so great to catch up. The questions about how MS is affecting me were expected. Has it been my mobility? Nope- just my head and more my sensory ability and that I wasn’t able to drive for two months. But how do I explain this really so that the significance of how I have been effected makes sense. I look so well. Today Dan took 12 month progress photos from when I had my first PT session last December. The photos are so different! My whole body shape has changed and despite in some ways being so unwell at the moment I look so much healthier. The lost weight must have been impacting my joints, bones and organs. How absolutely crazy that this is what it took in the end to lose the weight. I had 9 months of weekly PT sessions, walks and weight sessions on my own then the MS diagnosis followed quickly by 2 x 5 day doses of IV steroids and the OMS program.

But…. My boobs have gone AWOL. My large voluptuous breasts have retreated/ gone into hiding/ completely disappeared. I am not certain how I feel about this. They got in the way at times and lead the shape of my body. I had to have cups sewn into my wedding dress to accommodate and support them and they still took pride of position front and centre. Now they seem a little insignificant in comparison.

My hair is shorter and darker, my skin is mostly clear. I have energy and I easily sleep for 8-9 hours each night. Who am I?

One recent morning I packed up my nest. I decided that enough is enough. I can still take time out and rest as needed but I needed to put some of my things away off the coffee table and to open the space up to others. It felt very freeing and it was another opportunity for me to see how far I have come with my health and recovery. Every now and then I spin out thinking about the months that I have spent lying here, taking things slowly and now gradually trying to become more of my usual self.

I am grateful that with sick leave at first and now some income protection insurance I have been able to take this time and for us to be able to survive financially. My advice to everyone is check your life insurance and income protection insurance. You don’t want to have the additional stress about money when you are really unwell.

I still can’t believe how sick I have been and the seriousness of my illness. I hope and pray every day that with time I will stabilise and that we can halt this from ever progressing and increasing in disability.

I have turned into one of those Mums- “school holidays- again??”!!! They sure do roll around quickly. Christmas will be here in the blink of an eye too.

I love my days at home by myself or when Dan pops in for us to have lunch together. I also just had a nice weekend with the kids. We went out to the markets yesterday and I enjoyed the freedom of driving the kids and I out, taking time walking around and spending some money.

The weekend got off to a rocky start with Daniel as he started to give me some attitude and I challenged him about his behaviour and talked about the last two weekends we have had together where we have argued about the way he accepts instructions and talks back and that this makes the weekends so hard. It was like magic. He went to throw a few spac attacks but I was able to remind him about the discussion and that he could make a choice to do things differently.

I am usually so patient and gentle with the kids and at times I really have to manage my frustrations and walk away to take a breather. This is partly because my poor brain gets so frazzled and I have to work hard to compute what is being said. If there is background noise this can confuse me further. Even when I look at something and can’t work out straight away what I am looking at this confuses me. When I was out walking last week the sun was shining across the lake and it looked like a large ship was in the lake. While I knew that this wasn’t possible I couldn’t work out what was really in front of my eyes.

I was scared the other night as I couldn’t visualise Christmas or the school holidays and this made me worry that for some reason I won’t be here or that our Christmas won’t happen. After the kids decorated the tree and the loungeroom (see photo above) I felt a bit better and started to feel more positive about Christmas happening.

I also did some more research and found some more data to suggest that my risk of developing PML is very low in the first two years of taking Tysabri. I will keep looking into changes I can make and maintain in this time to increase my chances of staying healthy and relapse free if I can come off it after the first 24 months.

More reading, resting and recovery coming my way.

 

Thankyou for reading,

Simonne XX

 

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

 

Get me out of here

img_8628

 

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.