Ordeal Scale



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:


  1. Lying flat
  2. Light, sound, touch, reading or watching tv
  3. Turning over
  4. Being downstairs
  5. Computer interaction
  6. Sitting up
  7. Standing up
  8. Brushing teeth
  9. Standing for increasing periods of time
  10. Shower
  11. Walking/pottering around the house
  12. Light domestic tasks
  13. Having visitors
  14. Making meals
  15. Walking outside for increasing distances
  16. Being driven
  17. Driving
  18. Attending medical appointments
  19. Social visits
  20. Train journeys
  21. Shopping
  22. Attending social events
  23. Days out
  24. Holidays home and abroad
  25. Working full time
  26. Absorbing impact of emotional upset
  27. 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?


Every Day’s A School Day


Fear, anxiety, worry, uncertainty or whatever you want to call that peculiar feeling of unease are woven inextricably into the fabric of my illness. Every day at some point I will ask myself the twin questions: Can I manage that and will that do me any harm? Depending upon the degree of my debility at the time this might relate to going to work, taking a trip out, having a shower or sitting up in bed.

This anxiety is not irrational. It is based on grim experience. It is a safety mechanism to prevent me from doing more than my body is capable of doing. I’ve found, however, that it is not always my friend and that it can make me more susceptible to the very symptoms I’m trying to avoid, described as an acute episode in a previous post

In the last week I’ve had two such acute episodes one day after another. I’d like to share what happened and what I learned.

In the first episode I was lying quietly in bed. I became aware of a tingling and numbness down my left arm which intensified. I became concerned about what this signified which caused my body to be flooded with fear and adrenaline. The more I thought about it, the more distressed I became and yet more adrenaline flooded in leading to more catastrophic thinking and worsening, alarming symptoms. Almost a textbook case of a panic attack. Only this lasted for over two hours. I tried to deal with it by remaining calm and doing relaxation exercises. Crucially, I discovered that, for me, doing this was fanning the flames as the exercises focused my attention on my body and the alarming symptoms. It was pretty desperate. At one point I got up, ran cold water on my wrists and looked at myself in the bathroom mirror. These acts of distraction stopped the flow of adrenaline and allowed the situation to calm.

In the second episode I simply did too much physically. I was out viewing houses and pushed myself beyond my body’s limits. I had no worrying thoughts. Instead a body which was exhausted, overwrought and a nervous system in overdrive. The symptoms sound the same as for the panic attack. Dizzy, swirling head, heart pounding and arrythmic, gut spasms, unease and so on but the quality was different. Each were unbearably uncomfortable but this time the key to alleviating the symptoms lay firmly in relaxation. As the episode was caused by physical activity that my body could not tolerate so rest and relaxation were the answer.

This is the first time in eight years I’ve been able to distinguish so clearly between an episode caused by worrying and one caused by physical activity. I suspect that many of the episodes I’ve suffered over the years involve elements of both. At least now I have a choice about how I will respond: distraction or relaxation.

Oh, and I had an offer accepted for a house so, all being well, we will move on 28th May. I suspect that the next few weeks will provide many more opportunities for learning!