I’ve noticed that my degree of recovery (or otherwise) can be gauged roughly according to a scale of how much of an ordeal any action or event creates.
For me, an ordeal is defined by any action which creates serious, abnormal and distressing symptoms or where the anticipation of any action or event creates a debilitating sense of anxiety causing physical symptoms.
Here’s a highly unscientific scale I’ve devised of activities which might constitute an ordeal:
- Lying flat
- Light, sound, touch, reading or watching tv
- Turning over
- Being downstairs
- Computer interaction
- Sitting up
- Standing up
- Brushing teeth
- Standing for increasing periods of time
- Walking/pottering around the house
- Light domestic tasks
- Having visitors
- Making meals
- Walking outside for increasing distances
- Being driven
- Attending medical appointments
- Social visits
- Train journeys
- Attending social events
- Days out
- Holidays home and abroad
- Working full time
- Absorbing impact of emotional upset
- Managing infection
I’ve managed all of these without ordeal during the currency of this illness but since my major relapse in June 2013 I’ve managed only to get to no. 14.
One of the principal reasons for recording my thoughts is to try to discern some pattern, some causation that might inform my choices and actions. I confess to a devil that lives in my mind called Major Worry that the deterioration in functionality since 2013 is irreversible and that I may never again get beyond housebound.
I have my times of sheer despair when I find myself sliding back down this scale. Two nights ago, I sunk as far as no. 3. I console myself with the thought that my functionality is variable and what can go down can of course go up.
My prognosis is uncertain so it seems to me counterproductive to make an assumption that I’m doomed when the reality could quite easily be the opposite. So, perhaps foolishly, I choose to believe that I will, over time and giving myself favourable conditions, climb up that scale, inch by excruciating inch.
Today I’m having a visitor. I’m not anxious about it (hooray) and it remains to be seen what effect the interaction will have. Next week I have an important medical appointment which involves me being driven to Glasgow. I am anxious about this but will do it anyway because I anticipate that the long-term benefit will outweigh any potential risks.
I wonder just how many of us live with this sort of scale every day?