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


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

Author: boulevardedreaming

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

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s