It takes a mammoth amount of energy, time and effort to organise chronic illness life.
Throughout all my years with IBD it has been a barrage of appointments, procedures, medications and conversations about my health. It’s sort of why I started writing my blog because I was forgetful – medication side effect and just being BOMBARDED with everything at once – but I soon found myself keeping a routine of updating everything health-related – including starting the collection of what seemed like a never-ending supply of letters and correspondences.
But, that folder – now in its third volume because ten years is a long time – has saved me. It keeps things straight in my head, as my memory sucks some days. It also allowed me to have a smooth transition to a new hospital, because I had everything I needed to get the care I required.
Beyond my own OCD like, meretricious organised lifestyle, I am a huge advocate that being organised and knowing your disease history gives you the best possible conversations with your medical team. It saves time, from going round in circles, and gives you the power to actually get what is best needed at that point in time.
At home, I do alot of chronic illness admin on a regular basis. From adding new appointments to my calendar, ordering my repeat medications to checking my ostomy supplies and preparing for consults; it has been alot easier to be organised when I have the following things in place:
How to make the best of it:
- Set aside time each week or month to go through upcoming appointments – I usually do this when I am planning my week ahead, checking my schedule to add in new things.
- set reminders and document important things you want to discuss.
- Go through your medications, medical devices and keep a check on low stock levels to ensure you don’t run out.
- Most DACs (dispensing appliance contractors) have reminder services too, to avoid running out of bags.
- Set a reminder to order repeat medications.
- Use a delivery prescription service – with the surge of EPS (electronic prescription service) in the UK, prescriptions are available more readily and with delivery. I personally use Echo – only for a couple of months now – but it’s made tracking delivery and dates much easier to manage. (not affiliated)
- Keep a loose daily tracker of new symptoms for upcoming appointments. I do this via the My IBD Care app.
- Have your medical information – diagnosis, surgery dates, medications and doses – on a promenade place on your phone. Apple has the health record medical ID which stores your information for easy use in an emergency.
- Have the details of your medical team on your favourites – I have several points of contact so I have their direct dial, email address and notes on my phone to ensure I can find them easily enough.
- I also have them set as VIPs on my emails so that they come through as a priority and I can easily reach for them if I want to check our conversations.
- Have a folder of clinic letters, procedure details and important information – mine is now on volume three (lol) but it has the last 18 months of stuff in there, but it’s all relevant. I can also track things in there and request anything that is missing. I probably look at this folder and reorganise it once a quarter (every three months)
- Some days are harder than others – do what you can during that time, and don’t worry if it is not perfect. Living with a chronic illness is not perfect, nor is the admin behind it.
- If it all feels too overwhelming, having someone who you can lean on for help and support is really important.
Until next time,
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram