Two years of life with MS


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

Author: boulevardedreaming

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

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