The protective factor of forgetting

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I felt disheartened when I found out that an old spinal cord lesion has reappeared. Coupled with some new symptoms it was looking like a little relapse had snuck up on me. My Neuro and I agreed to scare it with some steroids so off Dan and I went to the local private hospital for three days of IV steroids.

How bad can steroid treatment really be? I knew that I recovered eventually last time.

I had forgotten…

The vile feeling of coming down from the high dose of methylprednisolone leaves me feeling hungover, beyond tired, emotionally unstable and trapped in the memories of how sick I had been back at that early diagnosis time in 2017.

Suddenly I was back to feeling emotional, uncertain and not being able to remember what wellness really feels like. My thoughts go wild, my appetite disappears and the ups and downs are relentless. I really had forgotten what was on the way.

As usual in the midst of this there have been little bright spots, a new friend visiting and bringing lunch, a friend bringing dinner over for our family, an extra long yoga/ meditation session and the time to stop and rest. I am so grateful again for my recovery, my lounge room full of flowering orchids, our sunny deck to lie on and the peace that the days bring.

I will not push myself to get back on track this time. I will be gentle and kind to myself. I will walk and swim and do what I can when I can. I have been getting in and out of bed for days. Up and down- I feel OK so I get up and do a few things and then I hit the wall and head back to my room. My next dose of Tysabri is just around the corner next week and there is some more recovery that needs to happen here before I can be ready for the next medication hit.

The long days are back. Staring at the walls or out the window, not being able to concentrate on a book or a story or even a TV show storyline. Feeling emotional and getting teary when watching an episode Kath and Kim because my emotions are so wobbly. The dark thoughts that float back in and the bewilderment of how, what, when did this all happen?

Tired, sick, sad. What a way to finish the week.

 

 

And then, slowly there was a shift and ten days after the last dose I have now had two days in a row where I haven’t needed to sleep during the day. I was back for Tysabri today and so glad that there was time to let things improve in their own time.

As they always do.

 

Thanks for reading,

Simonne XX

 

Author: boulevardedreaming

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

3 thoughts on “The protective factor of forgetting”

  1. Oh lovely lady. I feel you. The comedown after steroids is absolutely awful. I have had 2 rounds and like you I had forgotten what it was like. After my second course I was so frail I was walking into school to get my son like an elderly woman because I was so weak. After that I decided that I only only have a third round if my function was severely compromised. Deciding how and when to medicate is certainly not an easy decision. Glad to hear that the fog is finally lifting. Rest up and be kind to yourself xxx

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  2. My dear Simonne
    What mixed emotions I have as I read this latest entry! And I can’t get down to see you as yet. How wonderful that you have the gift of knowing yourself and being able to describe it for others to grasp a little of all you are experiencing. Keep on keeping on. And stay hopeful !
    Much love Rita
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  3. Take care and rest up lovely lady. You are very loved and an inspiration to many! Plus we have a Sydney Half Marathon to train for next year either the SMH one in May or the Blackmores one in September! xox

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