I'm feeling quite down today due to my suspicion that I'm experiencing yet another flare on my way down the Prednisolone ladder. As result I was reflecting on the time that has elapsed since my diagnosis of GCA on 4 July 2017 (anything but an Independence Day).
In addition to the physical problems one experiences, there is a huge psychological impact; not least the frustration of not being able to explain adequately to others exactly how you are feeling.
Some while ago a friend sent me an email asking how I was doing. Usually when faced with such a question I revert to the very typical British response of "not too bad”, "mustn't grumble" or some such variant. The email must have caught me at a vulnerable time as I decided to try to explain exactly the daily dilemma I faced in managing the condition.
In my response I referred to the famous short story by Frank Stockton called the "Lady or the Tiger" - don't be impressed I had to look up the author. In my particular situation the Lady has been replaced by another Tiger. One of these lives behind the door called "Inflammation" and the other behind a door labelled "Side Effects". Choosing the "Inflammation" door means sticking with the (reducing) dose of Prednisolone whereas picking the "Side-effect" door means increasing the steroid dose.
Each day I have to choose which Tiger to battle. Some days I emerge beaten and bloodied whereas other days my opponent and I just spend the time looking each other, waiting for the other to make a move.
The weapons I have to fight the battle would make Harry Potter proud - in addition to the steroid I have yoghurt, prunes, extract of Willow (aspirin),antacid and vitamin enriched chalk.
To make matters worse in my mind’s eye there is a crowd (let’s call them medics) watching which door I choose. If I go to choose the Side-Effects door there is loud booing. On one occasion somebody shouted out "spineless" - this person obviously hasn't seen the results from my DEXA scan - a shout of "osteopenic” I would have reluctantly accepted as harsh but fair.
The daily choice and battle, where you can only expect a draw at best, is wearing but I'm hoping that one day in the future I will open the door and the Tiger will have disappeared. Somewhat worryingly I have seen reports on this forum of a regeneration of the condition - like a vascular Aslan, but I'm putting such thoughts to the back of my mind.
I'm trying to remain positive, despite gloom, failing memory and lack of concentration, I still regard every day that I wake up as a bonus. Along the way pleasant distractions such as the sequel to "Escape to the Country" - the ingenuously titled "I Escaped to the Country" provide a temporary uplift in spirits.
My friend's response to the email? - a classic British response in that he completely ignored my outpouring and proceeded to tell me about his latest holiday.!!!
Excuse me now but I've got a Tiger to fight.
Michael