IC - Frozen in Time.


Since today was one of those strange days with M.E, when you wake feeling refreshed and hopeful of a better day ahead, I thought it would be useful to note exactly what happened. I am sure this will be familiar to all those with M.E, even those that feel they have ‘ALMOST’ fully recovered. 

To step back a few weeks I attended the IOP Symposium for the MA students in Falmouth for four days. I managed to attend for 2.5 days and was pretty proud of myself in the way in which I had managed my time and energy. The few days were brilliant, I was totally inspired by the various and wide-ranging workshops, the guest lectures, the students and new friends, the enthusiasm and the general ambience of the course. A hotel practically on the beach provided an early morning and evening walk in some great weather for the time of year. I felt thoroughly privileged to be where I am right now and because of my M.E. 

I arrive home exhilarated and keen to catch up on the coursework, supposedly unaware, although I should be aware by now, of the excess energy I was or had used up. I had lost sight of managing my levels of energy. I catch up this week but spend the following week in a complete daze, trying to focus, trying again and again to do a bit more coursework, but the work in the end overwhelms me. I can’t make sense of it and writing is practically impossible, My CRJ looks like a four year old has written it and I know I will have to go back and correct grammar, typos and re-answer questions I have misunderstood. I know why, of course, the enthusiasm and excitement is still with me so I don’t know when to step back and ‘STOP’!

This weekend I start to feel better, I decide to do a couple of hours work each day and STOP. However, I forget that we have a full weekend ahead! The weekend ends up in anxiety and tears. Finally I realise I have done too much. I am almost five years into my M.E and I still don’t pace appropriately and I guess I may never quite get it right. Maybe, a small price to pay for a few, fabulous days away.

So, its Monday, I work for a few hours this morning and I stop, rest all afternoon. I am rested and enthused again so I plan to work some more on some images I had taken during the recent snowy weather. I am keen to develop my ideas on light and dark as a metaphor, as seen above, and ended up going to bed too late. So here I am at 2pm, cannot sleep now as I am overtired, reporting on my day and how I arrived here after experiencing a weekend course in Falmouth and what it was like to be normal for just a few days. Its not that I aspire to be normal, I just really want to master pacing the fatigue!

Tomorrow I have to rise early for a medical appointment and know its another day lost to fatigue. 

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