Getting Started with Chronic Illness Management
The Chronic Illness Management Programme
In the first part of our chronic illness management programme, ‘Getting Started with Chronic Illness Management”. We explore the first steps you can take when faced with a new diagnosis, change in symptoms or if you want to better manage your chronic illness. Perfection may be something many of us strive for but it’s often not realistic, especially when it comes to health management, so what matters isn’t finding the perfect management routine that you stick to strictly, but finding one that works for you and is sustainable. This looks different for everyone, but you could start by building in small sustainable habits into your day, for example having a glass of water when you wake up if your goal is to increase hydration.
Capacity is also a key topic that we touch on throughout the programme. Taking time to evaluate your life and current capacity can give you an idea of what would be sustainable to add in right now, and areas that could be adapted to drain you less. One example may be the weekly shop, if you are doing this in person and find it draining you could order online and try home delivery instead. If you are finding it challenging to write shopping lists, you could create one basic list with all the essentials you need and revisit it each time you shop.
There are lots of different ways you can reflect on your capacity, and how you are currently pacing. You could use a calendar to map out your weeks and see where you are spending and gaining energy. You could also look into apps like Visible that use HRV to offer insights into your pacing and daily capacity. The most important thing is finding a method that empowers you to better manage your health in a way that doesn’t drain too much energy, and is something you can use as a sustainable part of your routine.
Here’s a few steps you could take to get started with your chronic illness management:
🍃 Review your life capacity. Use a spreadsheet or a calendar to look at how much time you are spending in different categories of your life, e.g. work, health and wellbeing, socialisation, homemaking. Reflect on your energy levels throughout the week and see if you can find any trends, or areas you could reduce the amount of energy required.
🍃 Set up a colour coded calendar. Following on from the first suggestion create a digital calendar you can draw
🍃 Make use of tech. Look into tools that could support your healthcare management, whether it’s apps like Visible for pacing, or apps like Bearable for symptom tracking. There are also apps available to track
🍃 Plan ahead. Creating a plan that helps you prepare for what might happen could help reduce anxiety if things do go wrong, but it’s important to plan for the best outcome too. For example, if you frequently get infections you make a plan including having meds in, in advance or what GP to speak to. Or if you’re going on holiday you could plan for flare-up friendly activities but also activities you’d like to do if your symptoms allow too.
🍃 Practice self compassion. In a world that values hustle culture and productivity over health and wellbeing it can be hard to be kind to yourself. If you struggle with harsh self-talk then think to yourself “what would I say to a friend in this situation?” and try to show yourself the same compassion you give to others.
Thank you to Main Squeeze for sponsoring this section of the Chronic Illness Management Programme. Main Squeeze creates compression socks that are designed to be styled, not hidden. Their compression socks are designed to be supporting yet fashionable, comfortable and stylish.
You can shop their range here: https://mainsqueezeworld.com/.
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You can listen to the podcast and programme here:
If you have found the Chronic Illness Management Programme useful and would like to support our work you can do so by donating to the project here: https://gofund.me/ed4bd948d.
![[Image description: The image has a light cream background with a image of Jo Southall smiling at the camera. To the right, bold black text reads “Building a Fulfilling Life with Chronic Illness” with the guests name, “Jo Southall” written below in soft teal. Under the text is a teal play button and a horizontal soundwave graphic. At the bottom, a circular logo shows a sky-and-trees scene with the words “Alive with Chronic Illness” around the edge.]](https://substackcdn.com/image/fetch/$s_!FMtN!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Ff04664c6-b582-4c81-9cc6-7cc41fa1505f_1080x1080.png "[Image description: The image has a light cream background with a image of Jo Southall smiling at the camera. To the right, bold black text reads “Building a Fulfilling Life with Chronic Illness” with the guests name, “Jo Southall” written below in soft teal. Under the text is a teal play button and a horizontal soundwave graphic. At the bottom, a circular logo shows a sky-and-trees scene with the words “Alive with Chronic Illness” around the edge.]")
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Please note this newsletter and the Chronic Illness Management Programme is shared for general information purposes only, and is not medical advice.