As a fellow spoonie, I know how difficult it is to manage everything – life, health, symptoms, people, appointments, work/study - ALL of the things! When it comes to chronic illness management, it always comes down to the 2 B’s - Baseline & Balance. What is most challenging about this is, it’s so different from person to person, that’s why it can’t be a one size fits all approach.
With this in mind, I’ve put together 10 things you can do to help manage your chronic pain. As mentioned, this looks different from person to person and it is vital that you focus on YOUR version of doing things. As a clinician, the number one reminder I give to my patients is: “You know your body best, I’m here to educate, empathise, support & encourage you to find YOUR way of doing things”.
- Your management plan – This is a list of resources that support your condition management; these are your daily and weekly essentials that help manage symptoms. Assumably, this would involve the next 9 tips (and more).
- A health care team – There’s an age old saying that it takes a village to raise a child, and still to this day this is a commonly used phrase as someone becomes a parent. Even though we have research, data, books, apps, fellow parents and general support for the process, we still discuss the difficulty, we see and acknowledge the challenge the person faces. We don’t have this for chronic illness, it doesn’t exist (yet). As the person who knows yourself best, you'll need to assemble your own team – this may include: a GP, Rheumatologist/Pain Specialist, Physiotherapist/Myotherapist/Exercise Physiologist/Dietitian/other allied health. Yes, this is difficult, but they DO exist, ask fellow spoonies, interview health professionals and you will eventually find yours.
- PACING & Trigger Management – This is simple, yet complex. You need to know your body better than you know anything else, this comes back to the 2 B’s - Baseline & Balance. I won’t go into too much detail; this could be a whole post on its own (watch this space).
- Food and Hydration - Eating and drinking to support your body's energy and fluid needs helps your body work more efficiently, which can go a long way in turning down symptoms. If this point is of interest to you, please reach out to the wonderful people at Spoonie Society and we may be able to bring you a post from one of our dietitians here at Active Health Clinic.
- Self-care – Having a chronic illness is one of the most challenging things you will go through, you need to be on your own team, you need to meet yourself with compassion and empathy not criticism or perfectionism. Identify your self-care; how, what, why, who and when. Create a list and put it in your management plan. You’re the only one who truly knows what you’re going through, therefore, you know how much you need self-care.
- Movement Plan – We know that those with chronic pain benefit from movement (see how I said movement and not exercise?). The type of movement will be dependent on your capacity, your symptoms and your preferences. This can be incidental movement (activity of your everyday life), it can be structured such as play, exercise (strength, cardio, flexibility etc.) or sport. Finding the right type of movement and getting your body moving can help manage, settle or prevent symptoms. Again, it is dependent on you and your 2 B’s - Baseline and Balance.
- Support People – Chronic illness is isolating and lonely, so it is important to find a support person who knows the ins & outs of chronic pain so they can meet you with compassion and empathy in times of need. Much like your health team, sometimes this can be a challenge to find, but there are many communities out there!
- Identity – Who YOU are, your identity outside of your condition, you are not your illness! This can be work, study, hobbies, commitments, joy, fun - a place where your condition is still there (obviously), but it’s not the focus - a break away from it as best as you can.
- Medical Management – This will be dependent on you and your healthcare team. This may be things such as medications, supplements, gels, sprays, salts, manual therapy, heat (cough, like your Spoonie heat pack), etc.
Finally, the most important tip:
- Your bad day / flare up tool kit – This is a list of things, even a literal kit of things that support you when your pain and symptoms are flaring. It might include many, if not all of the above tips refined into something easily accessible for you when you have that bad day or symptom flare up. Ideally, bad days are prevented, however, we are human, and life is usually the thing that gets in the way; therefore, symptoms can fluctuate quite a lot and our management needs to increase as our demands do. Rather than waiting until your symptoms flare up and then doing what you need, have your go-to plan prepared before you need it. When your symptoms are amplified your brain doesn’t work as well (literally), so keep your tool kit polished and up to date so that it is ready to go at a moment's notice.
This advice stems from personal experience along with the many years I have spent treating and supporting people with chronic pain and fatigue. The main theme of this blog is to empower you to find your version of doing things for you and your needs.
Accredited Exercise Physiologist at Active Health Clinic & Fellow Spoonie