My Journey To Self Managing My MS

My journey to self managing my MS

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I am a self confessed anorak when it comes to my MS. I get notifications from several MS publications and blogs that I read every day. I think I could blag my way into any Neurology Conference as a Consultant and present my latest thinking on stage - an MS version of Leonardo diCaprio in ‘Catch Me If You Can’.

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You can lose yourself in science though. And pretend that it is giving you a handle on the MS runaway train that you boarded without your agreement! But being an amateur expert on treatments, supplements and lifestyle doesn’t change the picture. I am still a person living with MS who is facing an uncertain future. Big gulp!

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So how do I go about self managing my MS?

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I have had to zoom in and zoom out to really understand the journey that I am on.  And I have come to accept some big home truths that maybe you will also recognise.

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In my life I have experienced trauma that made me feel helpless and unprotected. I have overcompensated by becoming a ‘people pleaser’ for most of my life. I am an expert at anticipating others emotions and trying to solve other people's problems to stop me feeling helpless and unprotected.

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When I tried to express myself in the past, I was not respected and listened to by influential people. So I disassociated from my emotions, as my environment was too stressful and upsetting to process and digest. I am still in contact with that stressful environment.

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In the past I suppressed my truth and my boundaries. This left me unable to discern when situations, personal and work related, were becoming unhealthy or even abusive. I became comfortable with being uncomfortable.

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Today, I am grateful for the realisation that managing my MS is about managing my thoughts, feelings and behaviour. I did not come to this realisation on my own. Close family, friends and professionals guided me on this journey to self management. I am truly grateful to them.

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How far am I on my self managing journey?

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The start was difficult. I felt resentment, rage and hostility toward past actions and people. I felt a great deal of frustration for not communicating better how I once felt or still feel. But after a while I was able to push through the anger. And more importantly learn the skills to stay away from damaging people and set boundaries around those who are still in my environment.

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I know that I need to be mindful of situations that are becoming unhealthy. I have had to relearn how to trust my gut instincts. I tell my children that your brain can deceive you but your belly never lies!

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And so my journey of self management continues. And I try to practice self compassion and set a daily intention to be kind to myself.

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I don’t know if any of this rings true for you. Either way I will ask you the toughest of questions: “how have you been kind to yourself today?’.