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Captain Chronic Pain –v- The Spontaneity Demon

August 29, 2017

I have just had the most wonderful bank holiday weekend with my family, and am suffering for it. (TL:DR image to explain spoon theory and pain balancing at the end).

spinal pain imageI have osteoarthritis in my spine, neck, shoulders and hips, and therefore live with chronic pain.  It ebbs and flows, is unpredictable, and it is a constant work-in-progress to find a balance in life which enables me to live as close to ‘normal’ as possible.

My life has closed in; I work full-time but that means weekdays from Wednesday onwards are usually out for me for any kind of social activity unless I am prepared to deal with a LOT of pain for the next few days and possibly being unable to work at all.  An overarching fear of unemployment and lack of employability because of my myriad chronic conditions means full-time employment takes priority over everything else.

Due to unrelated CLL, another chronic condition, there is a cumulative fatigue which occurs which also has a knock-on effect on balancing of life events and ability to, on the worst case days, get out of bed let alone the house.

If I have plans for one weekend, I need to ensure that at least one day will be empty for recovery.  If both days have plans, then the weekends either side need to be empty.  If that isn’t possible, I need to be aware that days off work may be imminent.  I need to balance the amount of spoons I have!

I therefore need to prioritise my activities and that leads to decisions which I find very hard to make, as it means no spontaneity, no visiting friends for just chats and socialising, no pub visits, nothing that is not a ‘special’ event such as a wedding, a birthday, an anniversary etc.

It means trusting my friends to know that the fact I cannot travel to see them because the balance I need to find to live my life means it is a luxury my body cannot afford.  It means trusting that I am worth the trouble my chronic pain causes.

No More SpoonsIt means having faith in myself that I am worth the extra level of care I need to give to myself, and that I need my friends to put in me.  That is a really tough one to comprehend let alone live, but it is a constant work in progress as is the aforementioned balance.

Chronic conditions ebb and flow so the balance is in constant flux.  I may be fine one day, one week, one time in which I say yes to an invitation, but the next day, week or at time of the event to which I was invited, I may be incapable of physical action.  The most difficult thing for me and for many of my chronic condition friends is that we are unreliable by default.  Our bodies won’t let us be reliable.  That is a lot for anyone to deal with and plans which are made may have to be broken.

I adored my bank holiday weekend shenanigans, and I accept the price I pay for it.  The hardest thing is to accept my loved ones will have to pay the price too.

spoon theory-one day

One spoon, two spoons, three spoons, four. Five spoons, six spoons, damn I dropped them on the floor!

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From → Autobiography

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