I realized this as I struggled to enter a hire car that we are currently using. However temporary it may be it causes me many difficulties and pains getting in and out. I manage far better with our own car as I have learned how to get in and out and how to sit more comfortably when we go somewhere. Even how to manage the difficulties that we may encounter.
I have to admit that I can no longer adapt this body to change as easily as I once did. My body does not work with me like it once did.
This body now makes me feel painful, worried and vulnerable.
I remember how many years ago my grandmother seemed such a slave to habits and routine. She would eat at the same time. Shop at the same place. Dress the same way. Her repetitive behaviours used to scare me and trouble me as I feared the day that I might become like her.
And here I am.
We are constantly told how change is good and change is inevitable. Maybe. But perhaps the people who say that never consider for a moment the changes caused by illness and disease.
Now the lure of travel to unknown places is replaced by the worries of how I can handle such changes and manage to do the daily nessesities, like showering, toileting and dressing.
Each night my routine of stretching, rubbing, soothing, medicating and packing heat packs all over my joints and muscles has become an essential routine. Even if I were somewhere else, this ritual would still have to be performed in order for me to be achieve a moments sleep. It does not inspire me to do spontaneous travels or romantic getaways; although I dearly long for them.
In my own home I have memorized where everything is and how to get there, even if I couldn’t see. My home has been adapted to me. Changed to help and assist me. I feel stronger and more capable in this home.
And I know I would be vulnerable elsewhere.
Each day I know how much energy and effort it takes to do the things that I do. I take comfort and a sense of independence knowing what I can manage for myself. It also gives me a sense of purpose. Small changes to this now have a large impact on me.
It is a painful aspect of chronic illness that no one seems willing to admit or discuss. But it is my reality now.
The saddest aspect is that in my former life I loved travel. I loved exploring. I loved experiencing. It was part of my spirit and personality. Now I must wrestle with this part of me like a nagging urge or itch that I can’t scratch.
Is this how it felt for my grandmother? Is this why she did what she did? Is this the price of becoming frail and weaker?
Now my body stays home while my heart longs to go to places and do things I that I still dream of. I feel like a compass being pulled in two directions.
Perhaps the greatest change of all has been how difficult change has now become.