Dear Healthy Person,
You won in the lucky jackpot of healthy genes.
You are twenty of me.
I think I lost my ticket.
I am a twentieth of the old me.
You can work, eight hours a day, five days a week. Maybe more.
I used to work eight to ten hours a day.
Now I’d be lucky to manage eight hours over a week.
You sleep eight hours and wake refreshed.
I used to sleep well and wake energised.
Now I’m lucky if I sleep deep enough to dream, or long enough to stop being tired.
You can go out for drinks after work, and dinner, then on to the movies. Or to the gym and a catch-up afterwards with friends. Or to football, then beers in the bar. You can go to the theatre, a concert, visit the family.
I used to. Five years ago we’d take the dog on a five kilometre walk every evening, just for starters. Now I’m lucky if I can walk for longer that ten minutes. Meeting friends for coffee wipes me out for an entire day.
If you do more than you really have energy for, push yourself to your limits, you get tired. Exhausted, maybe. Nothing an afternoon nap or a night staying in and an early bedtime won’t fix.
If I push myself to my limits, my body shuts down. Any movement hurts and is as difficult as wading through waist-deep porridge. Not the thin-water-with-a-touch-of-old-sock gruel Oliver Twist was served. Real, thick Scottish porridge. My mind shuts down. Not the have-to-read-same-paragraph-three-times way, but as if my brain has turned to… to… that stuff I’m wading through, whatever it’s called.
It would be great if an afternoon nap or a night in and an early bedtime was enough of a fix. But when I get that exhausted, it takes anything from three days to a week’s worth of four-hour long afternoon sleeps, days and nights staying in and early bedtimes to recover.
You know, back when I was you, Healthy Person, I used to think tired was a demanding week at work, three university assignments due on the same day, a couple of late nights out with friends, and a weekend gardening, cheering kids on at sports, a day at the beach or walking in the hills, and a visit with family. That was on top of the standard fare that comes with the domestic bliss and bounty of being a one parent family.
There was a time when it meant feeling like the wheels were falling off because the baby was up again at 11pm, and 2am, and 4am, and you hadn’t had an unbroken night since she started teething, and just one deep and undisturbed eight-hour sleep would set you on your feet again. Once, it meant aching muscles after a day gardening, or cycling, or mountaineering, that a long soak in a hot, foaming bath with a good book and a glass of wine would soon cure.
Back then, none of that meant pushing to my limits. Sure, some weeks required a hefty dose of stamina, and maybe a couple of those foaming baths and early nights, but it was just normal life. Actually, I’m not even sure I had limits. A bout of tonsilitis might make everything flounder like a fish on dry land for a few days, but mostly, tired was a problem with a simple and swift solution.
Now I am not you any more, Healthy Person, my limits are a daily trap for the unwary. And I have been unwary more times than I can count. Because my natural instinct when I have started doing something is to keep going until either the job is complete, or come to the end of a particular stage. I don’t want to stack half of the groceries away in the cupboards, and leave the other half still sitting on the kitchen bench. When the garden needs watering, I don’t want to leave half the plants still gasping for a drink.
So I ignore the creeping ache in my wrist and finger joints, and just use my left hand for a while instead. I pretend my left knee didn’t just sublux, and shift my weight entirely on to my right leg instead. And I keep going.
I know, Healthy Person, this never buys much extra time, and even if it does, it’s often not worth it later. I know what pushes me at those moments is pride, or frustration, or stubbornness. It’s hard sometimes, to accept I’m not you any more.
I’d rather push myself beyond my limits and risk being wiped out from pain and fatigue than never to push myself at all and give up trying, instead settling for a life of less than.
I know there are things I have to say an outright no to, because there is nothing worthwhile to get from doing them. When I was you, Healthy Person, I used to love an evening bike-ride with my husband, on the track along the river. But now I’m a twentieth of you, a bike ride turns me into a Raggedy Ann doll because after about five minutes turning the pedals most of my joints sublux, never mind the lightning storm going on in my face because of the helmet and the breeze from riding.
Mostly, though, I’d rather try things first and find out later if they have to be a no or a with conditions kind of activity. Because the benefit can outweigh the negatives. No point avoiding things because you’re in pain, if you’re still in pain and miserable from missing out.
But what if you’re used to being able to do whatever you need? How do you go from being on the go morning to night, to having to dole out your energy in small rations, and manage the frustration of not being the old you? How do you accept that you are not Healthy Person any more, and you’re just writing an angry letter to yourself?
You learn to balance the cans and the can’ts.
You learn to pace yourself.
You learn to change your expectations.
You learn to do things differently.
You learn to listen to your body.
And on the days that none of that works and the wheels fall off, you learn to be kind to yourself.
Some practical tips to aid the learning:
Keep a pain diary
This is the one I used when I was first figuring out a management plan for trigeminal neuralgia. There are different versions online, or you can make one to fit your own specific needs. They are valuable documents because recording activities and subsequent pain levels allows you to see at a glance the relationship between the two. Same with weather, what you’ve eaten, how much you slept the night before. I remember noticing that a seemingly unaccountable spike in pain every evening always occurred an hour after I had cleaned my teeth.
Identify what triggers which symptoms of your illness
This is especially vital if you are managing more than one condition. I really enjoy Qi Dong when I am having a relatively pain-free period. But many positions trigger face pain, and because of dislocations, standing up time is limited for me. Knowing which positions are problematic enables me to adapt a programme to enable me to get the most out of it by avoiding some positions, and having a chair to do other sequences sitting down.
Figure out new, less demanding ways of doing things
I can’t ride a real bike outside anymore. But I can take a spin on a static bike, indoors, with no helmet, no wind, no need to hold the handlebars. Good music playing on the phone, a nice view out the window, and four minutes plugged into the stopwatch.
Break tasks down into their component parts
I used to water the whole garden at once. Now I do it in increments, one bed at a time, and have a rest in between each.
Putting the groceries away. Do the fridge/freezer stuff first. Come back later to do the fruit and veg. Later again to do the tins. Work out how long you need to rest between each task.
Putting clean laundry away. I do bed sheets as one task. Towels as another, etc. etc.
Do things take all day, that once would have been a job of a few minutes? Yes. Do I care? Not any more. I like the feeling of accomplishment I get when I have done the whole pile of laundry and don’t need to collapse for a three-hour sleep.
Sometimes, lifting a basket of wet laundry and carrying it out to the tumble dryer in the garage is impossible. So my husband carries it out, and I stuff it in the machine and press the button. Other times, I can’t do any of it – so he does it all. And sometimes, all I can do is put my socks away. So I do that, and I mark it down as an achievement.
If you’re someone who has always rushed around doing things for everyone else, wean yourself off the habit. Give your kids age-appropriate tasks they can do to help out – even the tiniest toddler can learn to do things to help around the house. You’ll be doing their adult selves a favour too!
Focus on I can, rather than I can’t
Be honest about what you really can’t do, of course, because people need to know.
But don’t forget to think about what you can still do – or things you can do now that you couldn’t before.
I can’t drive longer than hour without my ankle dislocating. But I can drive. I can drive for half an hour, then pull over to rest my ankle for a few minutes before I drive the next half hour. We live an hour-ish from all 3 hospitals in the area, and I need to go to each of them regularly for appointments. I also know all the best coffee shops or scenic laybys in the area so I can stop en route.
I can’t go out to work any more. I was a primary school teacher and I loved my work. But now I can’t work, I have time to spend on writing and art that I never had when I was working.
So dear Healthy Person, dear old me, maybe I am only a twentieth of you.
But I’m the best darn twentieth I can be… and I’m not going to let you forget it.