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

 

Author: boulevardedreaming

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

One thought on “My nest.”

  1. Hi Simonne,

    Just been relaxing at my laptop and reading once again and enjoying your latest post. It’s so good to read about your children and Dan and your thoughts and your fears that you’re able to express so well. I had a good laugh about the boobs disappearing with the weight loss!

    We’ve just had a busy family school holiday time. It was great that Rob and Mia and Neo were able to visit you. They really enjoyed your hospitality and their time with you. Then Kylie and the children stayed over after going to a wedding in Newcastle so the children all got to see their cousins here.

    We’ll all be at Burrill Lake holiday park for a week in the Christmas holidays – from 17th to 24th January 2019 – so maybe you might be able to visit us there. Ian and I will be in a cabin, then next door Rob and Ai and Mia and Neo will be in a cabin. Then Pete and family will be in front of us in a caravan with annexe. Then Matthew and Shannon and Harvey and Harrison will be in a luxury cabin on the hill overlooking the beach. We had such a good time at Kiama last year, we’re all looking forward to this holiday and Rob and Ai are able to join us too – and we’ll all be in the same holiday park this time.

    I won’t be doing a family get together at Picnic Point this year. I’ll write an email to all the family after next Monday when we see how Ian is. He is having a relatively minor operation – a lumbar laminectomy – to relieve the pressure on his spinal cord and allow more blood to flow – something to do with the sciatic nerve ……. The problem is he can’t walk very far without his back hurting and his legs and feet feeling numb. He’ll be in hospital for about 3 days then it might take a while for him to recover.

    In the meantime I’m up and running after my knee replacement. I’m feeling healthier and fitter than ever and will be back at yoga tomorrow morning and I hope to join an exercise class on another morning too.

    It’s lovely to know that you’re taking care, Simonne, and you’re looking after yourself (and all your family) so beautifully. Lots of love and hugs

    [image: cid:_com_android_email_attachmentprovider_1_559_RAW@sec.galaxytab]

    Aunty Heaven

    *Mobile *0414 235547

    *Address *51 Carinya Road, Picnic Point NSW 2213

    *Email *heatherwatson51@gmail.com

    On Tue, 2 Oct 2018 at 17:53, Boulevarde Dreaming wrote:

    > boulevardedreaming posted: “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 ” >

    Like

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