11). Bits of this and that

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 walked out one afternoon back in August. The 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.

In the evening I popped a bottle of Veuve 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. More of the good china and 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 my clever daughter. All beautiful, fresh and made with love.

I had a beautiful lunch with two of my friends a few days later and we all got a bit giggly after some wine. One of the girls had made an OMS friendly cake which was YUM!

After my Tysabri dose on Friday 24^th Dan and I had a night in the city and met our brother and sister in law 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 got 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.

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 year 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 the lesions may have started to appear but it is all tangled with stress and so many changes in 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 was 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 while I have been – 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.

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 ever be in a wheelchair and be dependent on others. The thought of needing help to do everyday things scares me.

The weeks 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 any limitations on what I could do. 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 focus on taking 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.