Musings on change


A fear inspiring word for many, but it is the change we fear or the cascade of changes which follow.

Catalyst, the thing which instigates the following actions and reactions.

To change schools, often means a change in friends, changes the nature of our friendships with existing friends distancing and reducing the time available to relate and communicate, new teachers, new classrooms, new attitudes, once again facing introductions and adjustment periods.

The same can be said for treatments, new treatment regime. You never know when you start if it will work out or not, you have an extended adjustment period learning new side effects you may experience, risks, risk management which accompanies this regime, possible necessary dietary changes, home and routine changes to minimize or accommodate the change in side effects or effectiveness.

Will this new regime open the door to my home expanding my range of living, to encompass the local campus, shopping centre, performing arts centre, library, cinema?

Or will I begin imitating Mrs Pea Body and fluid retention leave me planning my day and journey’s according to toilet stops?

Will I need a new wardrobe in a month to accommodate a spreading waistline due to increased appetite and prescription drug induced metabolic syndrome or be left standing starkers as my clothes are too small to fit any more?

Will I still be able to go to work and tolerate the noise and sounds of my workplace, or will photophobia (light sensitivity), Hyperacusis (sound sensitivity), or Akathesia (inner restlessness) keep me paralysed at home?

Will I be able to enjoy a single weekly Beer with my old friends or will it leave me vomiting and lethargic?

Will I be able to sleep a regular 8 hours every night and wake feeling rested, or will I sleep for 17 hours at a time struggle to remember to take my medications due to regularly sleeping through their assigned times to take them and waking feeling tormented and frayed?

Will change be for the better or the worse? Will change give me new spoons each day or will it merely redistribute the same spoons across my day with differing priorities? Will things improve or will I merely exist? We cannot know until we try, often fear of past bad changes will hinder us in taking the opportunity to try new changes for the sake of the 50/50 risk which comes with each change of better or worse.

We MUST be open and honest with our doctors, they see a person in front of them with an ailment which needs treating and often do not see or comprehend the way our health is weaved intricately through our day to day life, they rely on us to let them know the extent of the impact any changes or conditions make on our live’s which exist outside of their consulting room.

When you live by the number of spoons you hold each day, we are more conscious of each spoon we loose.

will the desire to live a full life allow me to achieve it or will poor treatment and guidance eventually leave us reliant on doctors and specialists to keep our bodies functioning in spite of our minds due to long term side effects.

One day somehow, someway life will get better, we will learn who our friends are, who is worth spending spoons on, who is there to keep us from despair, how to live each day to its fullest and how to find satisfaction in our own little piece of the world. While the road to get there is rocky we cannot let that deter us from travelling the road to our destination, and when we walk that road carefully knowingly navigating all obstacles it presents to us, greater satisfaction can be found at the journey’s end.


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