Hello, my name is Louise, I am a registered Physiotherapist and I have SLE. I’ve been asked to write a piece for LUPUS UK’s website to give my perspective both as a fellow lupus patient and a healthcare professional and why I believe there are 3 main things we can focus on to help to manage our condition. I call these the 3 M’s: Medication, Movement and Mindfulness.
As a physio, my background was working with people with chronic lung conditions who needed long-term oxygen therapy at home. I, therefore, had a lot of experience of working with people with chronic health conditions long before I learned I had one myself. My patients were generally very unwell, and became very breathless with any movement which had a huge impact on their quality of life. In my experience the patients who remained more stable for longer and had the best quality of life were those who were in a good routine with their medication, had a good balance between rest and activity within their own limitations, and incorporated some form of relaxation or mindfulness into their daily routine – this could be anything from breathing exercises, puzzles or listening to their favourite music. Fast forward a few years, after I found out I had my own long-term health condition, SLE, I find I am using the same strategies of using the 3 M’s myself to keep myself stable.
Before I was diagnosed I didn’t even like taking vitamins or paracetamol for a headache. After an initial adjustment period, I’m now in a good routine with my meds and they are clearly helping. As I’m sure a lot of people have experienced my medication regime seems to constantly evolve. I’m currently in the process of changing immunosuppressants as the last ones, unfortunately, caused a drop in my white cell count so hopefully I’ll be back on track soon. I think maintaining a good dialogue with your consultant can really help to find a regime which suits.
I prefer to reframe exercise as movement. All of the tissues in our body respond to movement and loading. The more directions our bodies move in, the stronger and more resilient the tissues are, which reduces pain and injury. Our tendons, muscles, nerves, blood vessels and all the many layers of connective tissue are designed to slide and glide with ease, but when we move less, and in less directions this can all get a bit sticky. Movement stimulates the secretion of fluids which lubricate the joints and allow our tissues to glide. Movement is also really important for blood flow and lymphatic drainage. In short ‘Motion is Lotion’ and Movement Heals!
There is a lot of research to support the fact that exercise can also help fatigue and mood – my own experience and that of my previous patients definitely backs this up. My main exercise of choice is Pilates which I discovered when I was pregnant with my now 10 year old son. My son was born prematurely, and in the same year my Dad was extremely unwell awaiting a transplant but sadly passed away before he got one. Needless to say I wasn’t in a very good place that year (which incidentally I feel may have triggered the onset of my lupus). I originally started Pilates for pregnancy related aches and pains but what kept me going back was the benefits to my mental health. The fact that I got fitter, stronger and more flexible were all happy bonuses so I became hooked! A few years later I trained to become a Pilates instructor myself, and I’ve now transitioned from respiratory physio to solely working self-employed as a Physio Led Pilates instructor. I can manage my own hours and I love the fact that it is really adaptable. If I feel fatigued or have joint pain I can still move but keep to a short, gentle mobilising session and it always leads me to feeling better. On my good energy days (anyone felt like Wonder Woman / Superman after a steroid injection??) I can have a longer more vigorous session. Personally, I also find that gentle movement really helps my joint pains too.
Movement doesn’t have to be Pilates, it could be exercises lying in bed, walking, swimming, dancing in the kitchen, playing with the dog, or doing the exercise videos on LUPUS UK or Lupus Europe websites – above all it should be something you enjoy which doesn’t lead to more fatigue. Personally, I try to do some form of movement most days, but it’s important to start small and build up gradually.
Mindfulness or some form of relaxation has been shown to help to manage our stress levels, which is especially important as stress is a key trigger for a lupus flare. Studies have also shown that mindfulness based practices can also help to reduce pain. My mindfulness practice of choice is meditation. I try to do a 10 minute meditation every day, but in reality I usually manage 4 days a week. When this starts to slip and I get out of my routine I quickly notice my stress levels increasing and my lupus symptoms becoming more noticeable. I use an app which has a different daily meditation. It took a bit of practice but I’ve grown to love it. Meditation isn’t for everyone but finding some way of relaxing and being present, such as breathing exercises, listening to calming music, gardening or painting, even if only for a few minutes, most days of the week is something really achievable and I think incredibly important for everyone – not just us with health conditions.
As we all know the lupus journey is ever-changing and unpredictable, and there will always be good days and bad days, but I hope my perspective on using medication, movement and mindfulness can help in some small way for people to feel there are achievable tools they can use to have some control in managing their condition.