One of the foundations of my occupational therapy practice is supporting people to develop a ‘Health Toolkit’. Essentially, it’s ‘all the stuff you need to know, do, and own in order to keep on top of an uncooperative body / mind’…but Health Toolkit is a little catchier.
I tend to break health toolkits into 4 key categories. Knowledge, coping strategies, assistive aids and people. Everyone will need a different combination of ‘stuff’ in their toolkit but there are some commonalities for most people with a long-term health condition.
Knowledge
This bit is mainly made up with learning as much as you can about your own health. This includes the terminology associated with any medical conditions. Learning the right words helps us to accurately communicate with healthcare professionals. Think about the difference between ‘proprioception’ and ‘balance’. Sort of similar but not quite the same.
Having a good understanding of expected prognoses and treatment approaches can help us fight for the care we need. Understanding common triggers can help us avoid flare-ups.. or at least prepare for them! Finally, knowing *why* our bodies and minds react in seemingly weird ways can actually be really validating. All of this combined helps to work out what the new normal is going to be, and helps set us on a path to understanding ourselves a little better.
Coping strategies
Regardless of the timeframe we’re facing challenges for, learning how to get on with things despite our uncooperative bodies/minds is essential to good quality of life. For a short term injury, this might be about managing pain while we do essential daily tasks. For a long-term energy limiting condition it could be more about maximising efficiency to achieve the most we can on limited energy.
Coping strategies like pacing, joint protection, sleep hygiene and pain management will come in handy for almost everyone at some point. Some of us just need to make much more consistent use of these skills!
A lot of this stuff is linked with something called ‘acceptance and commitment therapy’ or ACT. For the sake of this post, I’m over simplifying, but the basic premiss is ‘sh*t happens and pretending otherwise is unhelpful’.
Challenges in life, are unavoidable, but what we can do is work on how we respond to them. Take chronic pain as an example, it’s horrible, difficult to manage, life altering in a host of bad ways. It will make you cry. But, it is possible to be in pain and be happy. It’s possible to be in pain and achieve life goals. That doesn’t make the pain suck any less… but it does balance our lives out. If you get enough joy, acceptance and creative problem solving crammed in there, maybe the pain stops having such a leading role in your story.
Assistive aids
This bit is less ephemeral and a bit more “buy these things, they’ll make your life easer”. Living with long-term conditions generally requires a fair amount of health admin. Things like taking medication, physio and cooking specialist foods all take energy (both physical and cognitive). Don’t even get me started on dealing with hospitals, the DWP, blue badge renewals and fighting for reasonable adjustments. Now combine that with all the usual daily living stuff, but minus the energy needed to actually *do* it all. Not a fun situation.
Using assistive aids can help save valuable time and energy. If nothing else, setting reminders can help take stuff out of your working memory by putting it on your phone. Medication management apps and pill boxes can hugely reduce the changes of under or over-dosing. Being appropriately medicated can help with pretty much all symptoms so the knock on effect of these changes can be huge.
Mobility aids can help manage pain and fatigue while out and about. It’ll be much easier to get your physio done if you’re not totally exhausted from going out before you even get started on the exercises.
People
No man is an island.. it takes a village.. yada yada. These phrases might be a little over-used but they are still true. The most successful healthcare approaches are almost universally multidisciplinary ones. Basically, you’re probably going to need more than just a GP to manage a long-term condition successfully. Friends, family, support workers, a massage therapist, physio, OT, dentist, doula, psychotherapist.. you name it. Everyone’s team will look a little different and it can take a while to work out who the best people are.
How does it all work?
Your health toolkit is designed to evolve right along side you and your life. How we cope and what we cope with can vary hugely, even if the condition(s) remain the same. The more experienced you get with using all this, the more you’ll be able to adapt to.
Hoping for the best, prepared for the worst, and unsurprised by anything in between.
Maya Angelou – I Know Why the Caged Bird Sings
The aim is to have a potential solution to all the scenarios you’re likely to face. If it all goes wrong but you’ve already got the right stuff to cope, the disruption to your life is minimised as much as possible. Sh*t happens.. but it doesn’t always have to ruin your plans.
My role in this is process varies from person to person. If you’re pretty comfortable self-managing but you’d like a sounding board to fine-tune the details, you might just need a Freestyle Appointment. If this is all new and confusing then we can work through everything step-by-step. Masterclasses for key coping strategies (pacing, joint protection and sleep hygiene). We’ll chuck some educational stuff into Freestyle appointments and build on that with some aids and adaptations, I’ll recommend some specialists who might help and we can finish up with a Flare-up plan.
It’s all totally individual and I’m happy to discuss further via email, phone or WhatsApp if your unsure of what you might need. Please do get in touch!
