Living with chronic illness seems to me, today, to be like having automatic additives mixed in with every experience.
By my calculations, I have three additives that compound the normal tiredness that comes from being involved in life, or the viruses, colds, and flu like illnesses to which we all succumb from time to time.
And each of those additives is itself a complex cocktail of symptoms:
Chonic Fatigue
Extreme tiredness
Poor sleep
Flu-like sickness
muscle & joint pain
Impeded cognition & concentration
Glandular Fever / post viral fatigue
Swollen glands
Extremely sore throat & temperature (aka flu-like sickness)
Extreme tiredness
Depression
Continuous low mood & sadness
Irritability & disinterestedness
Impeded cognition & concentration
muscle & joint pain
Slowness & low energy
Poor sleep
So, in Holy Week ministers expend a lot of energy and naturally feel tired at the end of it all. Usually that’s a good, satisfying kind of tired at having given of yourself, and received much to enrich your self in many ways. With a day or a week of rest, one will usually be restored and energised again.
So without chronic conditions, after Holy Week my experience might be: physically and mentally tired, satisfied and joyful.
However, with the current additives, my experience after Holy Week was more:
physically tired + (extreme tiredness x 2) + (poor sleep x 2) + (flu like sickness x 2) + swollen glands + (muscle & joint pain x 2)
mentally tired + (impeded cognition & concentration x 2) + low energy
satisfied and joyful – (low mood + sadness + slowness + irritability + lack of enjoyment)
And, having come down with a virus but not having the chronic illnesses, I might experience: sore throat, blocked sinuses, persistent cough, headache and muscle pain caused by persistent cough, poor sleep, tiredness. and it might last a week or two.
But, having come down with a virus, and living with chronic illnesses, the experience is much more:
(sore throat x 2) + blocked sinuses + (flu-like sickness x 2)
persistent cough + swollen glands
muscle pain x 3
poor sleep x 3
tiredness + (extreme tiredness x 2) + low energy + hopelessness + irritability + misery + impeded cognition & concentration x 2
and it will probably last at least a month.
I was inspired to create a visual representation of this shitty soup I imbibe daily.
How I get out of bed at all is something of a mystery to me, let alone manage to prepare and facilitate worship gatherings for my community, actively and effectively participate in meetings and conversations managing the life of our community, listen attentively in pastoral conversations … I suppose I can be grateful for my Protestant work ethic, and more seriously the resilience developed over years of living with chronic illness of one kind or another and the support and understanding of those around me.
But it is no mystery to me that I cannot do grocery shopping, clean the house, maintain the garden, or cook meals, keep up with personal administration efficiently, actively participate in friendships and collegial relationships, be present for very many pastoral conversations, or do anything at all from Sunday lunch time till Tuesday morning after planning and facilitating worship. I’m going to need that resilience, support and understanding for a long while yet.
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