Becoming chronically crappy was a life-shattering event: life was splintered into a thousand little pieces that were impossible to reassemble back into the same pattern. No part of my life has been untouched by the experience and no part is now the same.
Sometimes I feel as though my new life is lived in an alternate universe to that of healthy people. They all rush past me in a slipstream of busy-normality; working and raising kids whilst I live my separate slow, deliberate, careful life. It’s a relief to meet others with chronic illness and their partners because there is a shared understanding of my lifestyle and there is no need to try to explain it.
Perhaps it’s unsurprising then that I find it challenging to communicate to healthy people how I live. With salespeople and chatty tradespeople I’ve started using a sledgehammer approach – “I have a disability so I unfortunately I’m unable to talk with you”. It’s proven very effective at shutting down conversations that draw unnecessarily on my limited resources.
But friends, family and acquaintances (like the people at my local shops) need more explanation. They are genuinely curious and frequently dumbfounded at how I live. “Why are you leaving early/sitting by yourself/wearing earplugs/eating *that*/always out walking?” and “whatever do you do all day long?” are frequent questions that I receive. Who Moved my Speedboat has been my attempt to more eloquently explain life with chronic crappiness. Feel free to borrow my metaphor but if someone could return my missing speedboat, that would be appreciated.
On being healthy
For a healthy person, the body is much like a speedboat. Thanks to an outboard motor, you can cruise around doing whatever you want, whenever you want, at whatever pace you choose. When I was healthy, I zoomed around in my speedboat all day: working, exercising and socialising at maximum speed. I barely gave a thought to running out of fuel or the boat that gave me this freedom. At the end of each day, like a healthy body getting sleep, I refuelled my speedboat at the marina and it was ready to go again by morning. Life was speed-sleep-repeat.
What the ship?
Becoming chronically crappy was like pirates crept into my marina in the night and switched my speedboat for their big old dirty ship. I had always thought that drinking rum, swinging a sword and dressing as a pirate sounded like an ideal lifestyle but man, a pirate’s life is hardwork!
There are decks to be scrubbed, rigging to be checked and hull repairs to be made. With chronic crappiness suddenly came a pile of medical management and self-care tasks that I need to do each day to keep alive and functional –
- Stocking and taking medications,
- Carrying an injection kit and extra medications,
- Organising, waiting at and attending treatment sessions and medical appointments,
- Implementing treatments (e.g. preparing special meals, doing stretches, taking vitamins, monitoring and recording health), and
- Ensuring that my body gets the right amount of sleep, exercise, food, water, and salt.
With the little time left in the day that’s not taken up by ship maintenance and repairs, I’m keen to go out for a cruise. However it quickly dawned on me that my pirate ship has no motor – what is this sailing business?! I have to wait for the wind to blow before I can set off. Ugg!
Feeling chronically crappy, I have limited control over how I will feel each morning on waking – I may have the health to get a few things done or I may be stranded on the couch for the entire day. I just have to wait to see how the wind is blowing.
When I finally get moving, I’ve found that sailing is soooooo sloooooooow and tiresome compared to my zippy little speedboat. Switching on a motor is easy. Rigging and hoisting sails, and steering a ship is tough physical work. And after a day out sailing, sails need to be washed, unrigged and packed away.
Chronic crappiness doubles the time it takes me to complete any activity and quadruples the time taken to recover afterwards. Tasks which were effortless before chronic crappiness like talking on the phone, travelling in a car and walking around the block are all draining. Getting up and ready in the mornings takes me hours and requires a rest afterwards to recover. Running, vacuuming, getting drunk and going to a wedding feel as though they might kill me, especially if done in tandem.
Out sailing, it’s difficult to foresee when the winds will suddenly drop. I’m often part way through an activity when I start feeling increasingly crappy. There have been social events and medical appointments from which I’ve virtually fled in impending crappiness. For me, “I need to go home” means *now*, not after the lengthy farewell social ritual that requires that you chat with, say goodbye to and embrace every single person at an event.
(Wo)manning the oars
If the wind is not blowing, I do have the option to pull out the oars and row to my destination. Picture me seated alone, furiously rowing in a thick sweat as the bulk of my pirate ship creaks, protests and drags underneath me. Rowing is when I ignore my body crying out “not today” and I keep on going often with a tight, slightly manic smile plastered across my face and the words “I think I can, I think I can” playing on repeat through my mind.
I use rowing as a last resort when perhaps I have a medical appointment scheduled that I have waited months to attend or they’ll charge me a heafty cancellation fee. Also I may choose to use it if I have a social event that I feel particularly obliged to go to or something that I’m super hyped to do.
Depending on the nature of the event, I may feel the need to put on a mask of happiness and healthiness (fake it ’til you make it). At other times, I have given up all pretenses of feeling well and turned a pair of doctor’s waiting-room chairs into a make-shift bed (being able to rest anywhere is my new super power).
Rowing might get me to that one important destination but it’s not without consequences. As rowing is even harder physical work than sailing, it requires lengthy downtime for ship maintenance afterwards. Pushing through crappiness in order to attend a special event for an afternoon, usually costs up to a week in rest afterwards.
A pirate’s life
Hopefully now you understand why I’m always out walking – my ship is too slow for a speed-run. And why I leave with a brisk goodbye – the wind has fallen from my sails. And why I eat different meals – it’s part of my ship maintenance. And why, despite outward appearances, my pirate life is not all rum and rebellion. And that even though I’m not working and/or raising kids like healthy people, I’m never short on chores to do or places to which I wish to sail; I’m short on the wind to get me there.
I plan to write next about how I run my pirate ship in order to get the most mileage from limited winds, how I choose my destinations, and how ship maintenance is my full-time job. So watch this space.
There is a popular metaphor used to explain what it’s like living with limited health called Spoons Theory. It’s much simpler than my metaphor so you may like it better. You can read about it here: