Do you ever have those days when you wake up and know immediately that it’s going to be one of ‘those’ days? When you’re a ‘spoonie’ and have any kind of chronic illness then chances are it’s something you’ll know all too well. It might be your energy levels or your mental health that isn’t reliable any more, and even getting out the house can become so much more difficult than a lot of people realize. And when you have little kids then this can make the situation even more of a struggle as it’s not just yourself to think about.
Unpredictability
One thing that drives us spoonies mad is how unpredictable things can be. One day you’re fine and the next you can’t do anything and there’s no warning and no pattern. When things go downhill within the day it’s frustrating too, you might get everyone ready to go out, bags packed, coats on, buckles all fastened up and then realize you’ve already used up the energy you had before you’ve even left the driveway. Nobody sees any of that though, they just see a parent with their kids and assume everything’s fine because you’re upright and smiling and you look like everyone else. It can really affect your confidence and put you off wanting to plan things and do things with your kids because you never know just how bad you’re going to end up feeling on the day, or how wiped out it will leave you after.
Making plans
It can be so hard because you want more than anything to be able to say yes to things and give your kids the same kind of childhood other families manage without even thinking about it, but instead you might find yourself second guessing the simplest plans. Even something small like a quick trip to the park or meeting a friend for a coffee might turn into a whole internal debate about whether you’ll actually be able to manage it or if you’ll end up sitting there pretending you’re fine when you’re anything but. Sometimes the best thing you can do is strip things back and plan one small thing instead of trying to cram a full day in just to feel normal. Saying maybe instead of yes or no can take some of that pressure off too, so you’ve got space to see how you feel rather than locking yourself into something you’ll regret halfway through.
Access
Parking is something that most people never have to think about it for more than a second. But when you’re well aware that dragging everything and everyone across a car park will finish you off before you’ve even started then it’s something you have no choice but to think about even if it’s frustrating. If you’re a spoonie then you’ll know how a longer walk can use up half of what you’ve got before you’ve even reached the entrance, and if that’s the case then that might be the point where you start looking into a handicap parking permit with places like ParkingMD. You might be reluctant to do this but if it means you can keep doing the things you were with a bit of extra help then it’s so worth it, you don’t have to be a wheelchair user to be able to qualify for it. Finding places with good parking nearby and choosing those instead of other options is worth doing too if you don’t have a badge.
