By Amber Daw
Listen here: https://open.spotify.com/episode/3i7twTbDNj4kbnzwmrrRIl?si=2c94602ed429413a
This month has had ME and Fibromyalgia Awareness Weeks, as well as Mental Health Awareness Week. It's been a week centred around raising awareness, starting conversations and sharing experiences with all of these things, considering their complexity and the ways that they infiltrate every aspect of the lives of those affected.
Something I haven't seen much discussion about is the huge impact that managing chronic illness can have on your mental health.
Navigating life with energy limiting chronic illnesses is a constant tight rope walk. And it's no surprise that this constant balancing act can at times take a toll on your mental health. But what can you do when the two are so intrinsically linked?
Something that always comes to mind for me is the impact that completing activity diaries to regulate activity levels had on me mentally. They are used as a tool to help individuals pace and establish a baseline and routine in their activity levels. Each activity you undertake in a day is categorised as "High" "Low" "Rest" or "Sleep" based on the amount of energy it takes for you to do and assigned a colour. Based on this you colour in a 24/7 chart, with the goal being to manage the same amount of activity each day without experiencing severe post-exertional malaise (PEM).
For me, whilst it was helpful in establishing a routine and making me think about how I positioned high energy activities throughout the day/week, the more regulated my weeks became the more I struggled mentally.
Making decisions on how to "spend" my high energy hours felt heavier than ever before when I could see them coloured out in front of me. My entire day was measured in coloured little squares. A nap in the daytime felt like an instant failure, a blue stamp in the midst of a traffic light sea. "We shouldn't see any blue in the day" they'd said at each appointment- but try telling that to a body that was falling asleep sitting bolt upright in cars, and at tables- despite my best efforts in fighting the rest.
Where is the space for a day out or some spontaneity? Well, spontaneity isn't my strongest suit, it never really has been as someone who has to plan everything in an inch of its life. But a big chunk of red squares not dispersed by the restful hue of green left a nice morning out tinged with disappointment knowing that payback was on the horizon and a week of identical days was going to be set off-kilter.
This idea of having identical days really enabled my inner perfectionist to thrive and whilst yes I had broken that boom and bust cycle every medical professional tells you to avoid like the plague I was miserable. I was saying no to doing anything outside of my normal routine even when I really wanted to because I was afraid that that one small thing might tip me back into a perpetual cycle of crashes. My world that was already small only shrunk further.
This went on for months because at the time I was so consumed by doing everything “right” in order to feel a bit better that I didn’t make the connection between those hour-long squares, colouring pencils and my worsening mental state. It wasn’t until a friend reminded me that actually pacing can be so much more than squares on a piece of paper that I slowly began to let go of the at times militant tracking of my days.
At first, it felt alien just trusting my own judgement, using timers and making decisions based on how I felt in the moment but it did get easier. However, there is no denying that I did feel worse initially, my body adjusting yet again. Now I do tend to slip into boom and bust every now and again but it feels okay if it allows me to engage in life a little bit more. I no longer overthink doing things that bring me joy- a quick trip to the park with my niece or reading just one more chapter of my book- my body makes the decision in the moment, and yes sometimes the answer is still not today but sometimes in place of that no is a yes and that makes it worth it for me, for the sake of my mental health.
Pacing is crucial when you coexist with chronic illnesses, but it has to be done in a way that benefits you and doesn’t make your world feel smaller. Whilst on the whole activity diaries weren’t great for me they did very quickly teach me the fundamentals of pacing and helped me begin to get to grips with managing this predictably unpredictable body and for that I am grateful.
Pacing will look different for everyone, as will looking after your mental health. There is no one size fits all approach. It's a game of trial and error finding what works best for you- for me, that’s remembering that you pace yourself to make your life more manageable not to please other people.
It's holding on to the reminder that life exists beyond coloured squares, that you can do everything “right” and still have flare-ups and that’s okay, it's not your fault.