Living with chronic disease can be challenging, and very time consuming. It often feels like a full time job just managing it.
There are all sorts of aspects that need juggling to ensure that you are keeping on top of your chronic condition. They are important to ensure that you feel the best you can.
For me, following a routine is very important. When I wake up, I take my morning medication and then need a while in bed to let it kick in before I can get up. If I try to get up earlier, it sets the day up for a lot of extra nausea.
I also rely on a nap in the afternoon to keep my migraines at bay, and to help me with my fatigue.
If my routine is disturbed, it can trigger a lot of unpleasant symptoms and sometimes, a flare. That means I try to stick to my routine as much as possible.
Managing my medications is a very tricky and time consuming part of my life with chronic disease.
It’s not simply that I have to remember to take multiple meds at various times a day, but I need to make sure that I refill my organiser on time, bring meds with me when I leave the house, and make sure I always have enough of all my medications.
Keeping my medication in stock is a challenge as I have to constantly check how much of everything I have left, laissez with with the pharmacy to see if I have any refills on file, and make sure I order any repeats with my GP surgery several days before I might run out. This isn’t even mentioning any telephone calls my GP wants to have regarding my meds, and picking them up from the chemist!
Anyone with a chronic condition will tell you, that they spend a good amount of time waiting for doctor’s appointments, and at doctor’s appointments and tests.
I have multiple conditions, and recently it feels like I have spent a ton of time at appointments and tests. Since September, it’s been a constant barrage. If I’ve not had to see my GP, I’ve had to see one consultant or another, or have needed a test, or physio.
This typically requires at least a few hours at the hospital (rarely are they on time 😒), and can mean a long drive there and back too. If it’s a test, you can often expect to need a day or two to recover. Overall, going to all of these appointments takes a lot of time and energy.
Feeding Tubes, Ostomies, and Other Medical Devices
I don’t personally have any of these (although we’ve discussed the possibility that I might need need a feeding tube), however I know several people who do.
Having a feeding tube, ostomy, oxygen, or using other medical equipment, can take a lot of work. You need to make sure that things are clean, change your bags, flush the site, make sure you have enough supplies, and so much more.
You often also have to work with extra medical professionals, such as dietitians or nurses that might come into your home to help you with things.
Being ill takes a lot of time and effort. If you aren’t managing your medication, you are trying to keep your routine in check, or look after your medical device. That is if you aren’t at an appointment, of course!
So, while it might not seem like many of us with chronic conditions are working, we really are! We are working on managing our health.
If you have a chronic condition, I’d love to know what jobs you do to manage it!