In 2010, I was diagnosed with Lupus SLE, an autoimmune disease where the immune system goes crazy and starts attacking healthy tissues: my joints, tendons, muscles and nerves. It was a life changing moment but I'm lucky in that so far it has not attacked any of my major organs. Some sufferers experience life threatening attacks on their hearts and kidneys, but all of us suffer bone-crushing fatigue, a major feature of this disease. Despite having frequent and debilitating 'flares' where the illness becomes more active, I've managed to minimise these and develop a good quality of life using permaculture design.
I live in a housing co-op with my husband and teenage twin boys. As well as being a mum and housewife, I’m also an artist and permaculture designer and have always been active in my community. I have to be very careful how I manage my own personal energy, in order to do the essentials, and yet still have enough left over to do things that I enjoy. Over the last few years, using permaculture design techniques, I have developed the following basic steps to manage my health and wellbeing:
Observation is a key foundation of permaculture design. I created a detailed ‘symptom diary’ and recorded daily information about myself over a four month period, and I repeated this two years later.
I recorded what I ate, what the weather was like, how much rest I had and the amount of exercise I did, and what my energy levels, moods and symptoms were like each day. From this data I was able to start building up an accurate picture of my health and the things that had an impact on it, allowing me to respond to the problem as best I could.
For example, I noticed that the Lupus would flare during sunny weather; the joint and tendon pain increased along with headaches, flu-like aches, nausea and depression. By looking back through my data I was able to see a firm connection between an increase in my symptoms and the sunny weather, and so I realised that I was photosensitive, which is a common feature of Lupus. Now I am more aware of this and I have been able to adapt my lifestyle accordingly: avoiding too much UV exposure by staying indoors during the hottest part of the day, using sun creams at all times (even in dull weather) and keeping covered up with UV protective clothing, using hats and sun shades. This had made gardening rather tricky, and is one of the hardest lifestyle changes I’ve had to make. There are times when the sun still catches me out, but I am managing this better as time goes on.
Giving myself stressful deadlines and work schedules always impacted negatively on my health, so I learned to work more spontaneously and organically in small and slow steps, and I now only work with people who are sympathetic to this. I also noticed that certain foods led to a flare, so I cut or drastically reduced these from my diet.
I sit down with a piece of paper and create a mind map of all the commitments I have going on in my life: the inputs and outputs of ‘me’ as a system. This gives me a clear picture of the demands being made of me, where I’m giving out my energy, where the ‘leaks’ are in my current system, and where I am being nourished. It enables me to bring my expectations of what I think I can achieve in line with what is actually achievable; therefore I’m able to obtain an ‘optimum yield’ (permaculture parlance) within the limits of my resources.
For example, I realised through doing my most recent audit that I had too many projects on the go, so I decided to put a large output, my artwork, on the back burner for the time being. I prioritised other projects, such as working with people in my community, teaching permaculture, and I also wanted to start writing again. I’ve felt better for it and will resume the artwork when I have the time to spend on it.
Work From Yourself Outwards
Like the rings of a tree, we can only grow outwards once we have developed a strong heartwood. This is particularly true when you have an energy-limiting illness because you have no ‘overdraft’ and every unit of energy is usually accounted for, so you cannot ‘overspend’ without becoming very ill.
I’ve learned to live within my energy limits, which has meant I’ve had to nourish my innermost zones first before considering expanding into my further-out zones. Although it seems selfish, I’ve had to learn to put my own needs first. If I don’t look after myself, the Lupus won’t allow me to help others.
This principle also applies to our homes and personal relationships. These need to nourish us in order to create healthy, functional living spaces. For me this has meant learning communication skills to maintain healthy family relationships, and reorganising the house to make rooms function better for our developing needs.
In my garden, I have created a space that nourishes my spirit and my food cupboard, and which demands very little energy to maintain. Now that these innermost zones function efficiently, I can consider moving outwards, so I am now able to help my next-door neighbour by designing his garden.
I’m achieving my dream of teaching permaculture through writing, and by inviting people into my space, teaching them there rather than expending energy going to visit them. I’m also able to connect with my wider community through the internet, finding like-minded people and creating support systems in virtual space.
Making the Most of the Big Outdoors
Encouraging wildlife into my garden gives me the opportunity to observe Nature even when I don’t always have the energy to go for walks in wild places. Watching the birds on the bird-feeder gives me reflective time every day and puts me in a meditative state where my mind slows down its chatter. If I’m too ill to get out of bed, then listening to the birds and my own breathing is enough to take me to that calm state of consciousness.
Stress plays a key role in any illness, and so giving my body regular times of restful alertness, gives it space to heal. I’ve found that by spending time listening to my body I’ve developed a greater sensitivity to its signals, which enables me to respond appropriately to it, rather than expecting it to perform in ways that it can not. If we allow ourselves space to listen even more deeply within, we are able to tune into our most natural selves, the part of us that gives us inner strength and wisdom.
Follow Your Natural Patterns of Energy
We are all intrinsically part of Nature’s patterns and seasons, which supplies us with the rhythm in our lives. For many, growing food helps us attain a more meaningful personal relationship with these natural rhythms, helping us to notice how they impact our own energy patterns.
I’ve noticed that I often have a lot of energy around the spring and autumn equinox each year, so I use this energy to help me develop my garden and creative projects. In high summer and deepest winter my energy wanes so I focus on relaxing and socialising at these times. I’ve also noticed a peak of energy (or agitation!) at full moons which I often use to sling-shot me into getting things done. My best time of day for creative work is mid-late morning; after lunch my energy slumps so that’s when I plan to rest. All this awareness takes time to cultivate, and I have learned a lot from my mistakes, but by following my natural patterns I have been able to create space in my life for creativity and spontaneity, which as anyone with bad health or disability will know, is a very precious thing.
Use Biological Resources
A pharmaceutical approach to treating chronic illness often seems set against natural recovery. Many drugs act as herbicides and pesticides on the body, creating side effects that unbalance the whole system. I’ve found that I’m very intolerant to most of the drugs my consultant has prescribed over the years, but sometimes they have been necessary to keep inflammation in my body under control. A permaculture approach to garden pests and problems is to work towards creating a healthy equilibrium, and in the same way I am now finding that the best way to treat my Lupus is by designing a healthy lifestyle for myself, which includes a specialised diet and supplements, herbs, rest and meditation, exercise and complementary therapies.
Even if you don’t have Lupus, you may find these basic steps to self-care helpful in attaining a healthier lifestyle. Taking personal responsibility for our health and wellbeing will make us more resilient human beings and permaculture gives us the tools to achieve this.
Flo Scott is a permaculture designer who specialises in working with households to create beautiful, edible, low maintenance gardens. Her passion is to improve access to affordable healthy food, enabling people to improve their well-being and increase their connection with nature through their gardens.
For more information on Flo's work, visit www.permaculturedesigner.co.uk
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