Sorry, I Swear

Used the ‘f’ word last night – added and ‘ing’ for extra emphasis – flung it with a full throttle hostility.  It startled both my husband and myself, and we have been tiptoeing around each other ever since.

It is not like me to lose my temper, or at least not to express myself with vile expletives – that only happens when I am really at wit’s end.  So what triggered the episode?

On the surface, it was about food.  I had been anticipating a healthy dinner of salmon with lentils and kale all day, and when my husband returned from a meeting too tired to tackle it, suggesting takeout again, I blew.  Having managed only one decent meal a day over the past few days, I needed something of substance and said so … in as many words.

The meal squabble is only the tip of a larger issue, a growing frustration, and resulting irritation related to loss of independence.  Living with chronic illness and losing mobility means I rely on others to see that my needs are met – a condition that is counter to my instincts, and certainly my sense of pride.  Whatever control over my life that I had experienced prior to disability is now gone.

The difference between depression and ME/CFS is that with depression what was once pleasurable no longer holds interest, whereas with ME/CFS, the desire is intact but the ability to follow through is impaired.  For example, now that spring has reared her glorious head, I feel the impulse to clean, re-organize, and cull the clutter that we’ve collected over the winter months.  Beyond thinking about it, the physical energy that it takes to actually do it is M.I.A.

Yesterday, I woke up early, caught the excitement of the sun’s radiance, and set about making something of the day: washed my hair, stripped the bed, remade it, and….crashed, unable to do the simplest of task afterwards.  Enthusiasm (or positive mental attitude) is not the magic bullet to overcome the challenges of this disease.

Today, still unwilling to be daunted, I am taking a more cautious, measured approach:  woke up later, put on the kettle, made the bed, made tea, returned to bed.  After a while, made breakfast, returned to bed, listened to a book on tape for a bit, got dressed, looked at the closet, went back to bed.  This is what is called ‘pacing’ – doling out energy in small allotments, mindful of the limited source.

Now that progress is measured in teaspoonfuls, I still feel the angst of having a full schedule – a remnant of my former, no-time-to-breathe, lifestyle.  I am pressured (from within) to get-it-done, spend unavailable resources trying to come up with solutions, push myself to do one more thing, come away distraught with little to show for my efforts; surrender to the impotency and wait for the next (almost imperceptible) surge.

This is the nature of my irritation.  Intellectually, I know that acceptance conquers more than resistance, and that with patience and adherence to my body’s signals I will, in time, be better, however; I am not merely an intellectual being, and goddamnit, enough is enough!

I am f#@*ng ready to get on with life!

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.

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