It’s been floating around social media for years. The saying that ‘we all have 24 hours in the day and it’s up to us how we use those hours’. 

It’s a saying that raises a lot of debate over the amount of privilege a person has in their life that they get to ultimately choose what they do with all their time, and having all the time to themselves to begin with. A lot of us don’t have that privilege. It doesn’t take into account the people who have caring responsibilities, or conditions that take them longer to be functional. 

Having a chronic medical condition can be a full time job on its own at times. Yes, it goes in stages and phases where the maintenance of the condition can be more or less. Sometimes there is more investigative work to be done, other times there is a reprieve.

For me, it is the ‘unseen’ time, where I am not in public view, that my condition needs the most amount of time to be managed. 

Just to get pain relief treatment every fortnight takes me a few days to recover from. Add up those days over a year… and the six days on average per month becomes two and a half months of every year that it takes me to recover from one type of treatment (going on for over 8 years now). That’s just treatment for pain relief – something to keep me upright and only over a very long period of time will help me improve. Adding in multiple other treatments and that quickly becomes a lot of time spent in recovery and just to maintain your functionality. 

Even the simple appointments can blow out into a longer recovery, mainly because we never fully know how our body will react to what is being done to it. A simple dental treatment appointment can take over a day of pain recovery and into the next day too. I envy people who can go to the dentist and back to work straight afterwards as normal.   

Then comes the additional rest – nighttime sleep is not always enough. I can usually stay upright for about 7 hours. After that, most days my brain starts slowing down and my neck aches by 2pm and within an hour or so, I’m usually zonked out in survival mode and/or asleep. Until 6pm I’m out in dreamland, having my daily nap. Using 3 hours to sleep every afternoon is a lot of time that isn’t productive but vital for me to function. I skip a nap one day and I pay for it the following few days. I hate to think how many hours a year I spend napping instead of being able to use that time to work, generate an income, see my loved ones or just relax in front of the tv. 

It takes longer for me to have a shower, cook food and clean up, do basic ‘life’ tasks because I need to take my time to not aggravate my symptoms like dizziness, and to factor in breaks in between each task. All the prescribed things to do to make you feel better – get some exercise, sunshine, meditate, connect with someone – are all things that take time and need time to recover from too. All those little breaks add up. 

There is an extreme amount of planning that comes with a simple excursion or outing. Checking out a venue to make sure it’s accessible, previewing a menu to make sure it has options for you to eat, packing medication and anything else you might need during the time, considering how much rest time you need before and after the event so that you are able to function and enjoy it. Long gone are the days of spontaneity!  

And then there is the mountains of medical paperwork. If I could outsource the medical admin, I would. The medication scripts, referrals and mental health plans, documents and certificates for work, applications for welfare, insurance, medical assistance or grants. Trying to fill out a 30+ page application form with supporting documents would challenge anyone, let alone if you are sleep deprived, stressed and dealing with an unpredictable body and unfamiliar medical or system jargon. I wouldn’t wish it on anyone.

If someone is on long leave from work to manage a medical condition, don’t assume it’s like a holiday for them. They probably have traded a familiar full time 9 to 5 job for a 24 hour, full time job with no days off, that they never had a choice about and are overwhelmed by it. 

If you are in a similar situation where your time feels like it is dedicated to just keeping your body and mind functioning, then I hope that you know that I see you, I understand, and I hope that you find pockets of time in your day just for something that you would rather be doing. Putting your time into taking care of yourself has immense value and I hope you know that you are worth the effort. I hope by having these conversations that we can build more empathy and understanding in the community around the practical side of living with disability or medical conditions. 

Take care, Readers. I’ll keep the light on. 

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