165/365 – The meaning of remission

Remission is defined as a period where a patient’s health improves – last night I found out I have misunderstood and over complicated this.

After a difficult adjustment to my reduced steroid dose last week, I decided to give my body an extra week to cope at 2mgs. This was a tough choice as I questioned whether I was being weak. It had been a constant over the last few months – my stopping and starting the steroid reduction. Forever adjusting. Was I putting back my chance at remission each time I hesitated?

What remission meant and now means to me

My version of remission has been drug-free and symptom-free – I thought this was the common understanding of the term. While this  is the holy grail for people with myasthenia, remission simply means symptom-free. That the condition is under control and not flaring. Not that that is an easy feat but it’s easier when still taking medication

I found this out last night from one of the members of the Young Myaware London support group and it instantly made me feel better.

 It’s more realistic and closer for me right now. The experience of reducing my steroids has highlighted how reliant my body has become on them, but that’s ok. I can still have a crutch – I don’t have to do it all on my own.

For the first time, remission feels like something I can aim for as long as I keep in mind the marathon not a sprint mentality.

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