Be still my beating heart


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…….

Author: boulevardedreaming

My journey through diagnosis with MS and the first years of living positively every day.

2 thoughts on “Be still my beating heart”

  1. Dear Simonne On the day your blog arrived, I spent most of the afternoon reading, reflecting and soaking in all you expressed re all that has happened to you over a lengthy time. Simonne your blog is extraordinary. I read a little at a time and then sat and tried to immerse myself into all your experiences of fear, anxiety, questioning, determination to stay positive, seeking hope and reassurance, facing the unknown, appreciative of the support of friends and deeply concerned for and appreciative of all the family etc etc It’s an amazing blog Simonne and I am so grateful that you are sharing it with me. Gives me so much to ponder. I have read it on the phone but I will do so again when I return to college and read it on my computer.

    Much love and deep gratitude. Rita

    Sent from my iPhone


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