Big Spoonie Little Spoonie

The term 'Spoonie' is one commonly used with chronic and invisible illnesses. It originates from a great read; The Spoon Theory by Christine Miserandino, in which she attempts to explain to a friend how having Lupus affects her daily life. (http://www.butyoudontlooksick.com)

She uses spoons as a physical interpretation of the unlimited possibilities most 'normal' people have in daily life. She explains that those with a chronic illness don't have that luxury and are limited in the number of activities (spoons) they can undertake. The spoons were used to convey things being taken away as the day progresses. Things like energy running low and how sick people quickly 'lose' parts of themselves in the process.
To be completely honest, I’ve never been entirely comfortable with the ‘Spoonie’ term. I certainly understand why it's so commonly used in explaining the life of a professional sick person, but I often feel it's almost an acceptance of defeat. I want to award and applaud myself for what I can do, not what I can't.

I've struggled for years in having Crohn's Disease to deal with the idea that parts of my life that I love have to be limited, or phased out entirely. It's often heart-breaking and can seem so unbearably unfair. I feel like I've gone through puberty and the grieving process all at once since my eventual diagnosis.  I was almost unbearably angry at first, and accepting my life had changed irrevocably was something I'm not sure I'll ever get used to. I wept and pushed myself to be the 'old me' rather than adapting my life to suit the newly diseased me. I didn't want to be this person; I wanted to be ‘normal’, and fun and not the friend who can't make it YET AGAIN. I felt a constant temper tantrum bubbling away inside myself, (and there was enough bubbling inside to deal with as it was).

I now try to decide as I wake what I can manage that day. If I find I'm really struggling, I mentally rate myself on a score of 1-to-hospitalisation and then take it from there. I work full time but my employers are very considerate of my condition. If I can't cope they appreciate I still want to try (plus sick leave only leads to incredible anxiety) so they'll give me alternative work, or even let me go for a lie down. Housework needs to be planned too: I will maybe try at least one task after work, maybe two if I'm feeling cocky and make sure I have enough time left over for an hour or two's relaxation.

In the last year or so I feel I've finally begun to understand what it means to be a 'spoonie'. I try not to plan to far ahead wherever possible, as I hate letting people (or myself) down. My loved ones understand this now too which is an amazing bonus. They never pressure me and have adapted our relationships to cater for my badly behaved bowels. Those simple acts are incredibly kind and remind me how much I should never take them or anyone in my life for granted.

This post was written as part of The Super Spoonie Story Swap