I across a piece of writing by a woman who lives with a chronic and invisible illness – Lupus. It’s her attempt to convey to others what life is like when you have to factor in a demanding health condition. Please click on the link and read her words and then come back for my thoughts.
Christine’s theory resonates with me. I too feel like I have a limited amount of spoons which I must always be mindful of. There are things I must do or not do and choices I must make that aren’t on other people’s radar. I have become very good at spacing out activities and factoring in time for treatment or rest so I can fully participate in my carefully selected activities. Sometimes I think: “Janette, this isn’t living life to the fullest! Life is meant to be LIVED, go out there and do everything you want to, don’t let CF hold you back!”. But if I do that, if I use all my spoons in one big bang, I know I will feel #$*& and I don’t like feeling #$*&, especially when feeling #$*& is the best case scenario. I just can’t bring myself to burn out like a shooting star.
So what are my spoons?
Let’s say I have 12 like in Christine’s hypothetical example.
1. My first spoon vanishes the second I open my eyes. Why? Because the night before I most likely coughed and coughed and coughed. I probably had to adjust my pillows a few times to prop myself up more. I possibly needed to turn on the light and have some puffers or cough medicine. In any case I slept lightly and am not refreshed. I definitely had a huge morning cough as soon as I woke which knocks the stuffing out of me right away.
2. When Dave’s in hospital I need to get up extra early to take the dogs to the park for a run around, sniff and pit stop. That 20 min earlier alarm is a killer. Then I need to go back and do it all again in the evening.
3. Before work I do up to an hour of treatment. My version of mucus clearance is the PEP which I do for 30-40 mins (more on the PEP in a later post). I then nebulise whatever cocktail of drugs I’m on that day – ventolin and atrovent and the antibiotic flavour of the month.
4. Travelling to and from work knocks off a spoon. Stairs are an annoyance as well as standing in peak hour packed trains or on train platforms.
5. I reckon work takes 6 spoons from me. When my patient list is packed, I have a lot of things on my “To Do” list which require an early start or late finish, when I work through my lunch break or there is a meeting after work I go through a lot of spoons.
6. Dinner and dishes – we gotta eat and we gotta clean! And as we all know, Dave eats a LOT. I prepare enough food to feed at least four people at every meal.
7. Treatment. Before bed I do more pepping and nebbing. Depending on my energy levels and motivation I clock up another hour.
If my maths is correct, that’s all my spoons gone. As Christine suggests, if I trade in a routine spoon for an extracurricular activity spoon or borrow a spoon from the next day I find myself at a disadvantage and life starts to spiral. A perfect example of this happened recently. This last Thursday evening we bought gelato for dessert and had a stroll around the Newtown streets – one of Dave’s favourite things to do. The following night we had pizza out to celebrate the start of my holidays. Both nights, instead of my evening PEP session, I used my treatment spoon for something fun! Come Saturday I paid the price. I was breathless whenever I tried to walk and had to keep asking Dave to slow down. At times I found it difficult to talk to people whilst sitting still in a chair. My use of ventolin and atrovent went through the roof and my night cough doubled in frequency and intensity. At some point in time I neglected to have enough pills and my tummy was upset too. In short, I felt decidedly dodgy. I remembered that there is a hidden price to the gelato and pizza, one not measured in dollars, but measured in spoons.