I was diagnosed with Central Sensitisation Syndrome (fibromyalgia) with predominately fatigue and pain symptoms in November 2018. It is a condition of the nervous system that is associated with the development and maintenance of chronic pain and other symptoms. It basically means the nervous system is more sensitive and has a lower threshold for what causes pain and other symptoms. What that means for me now are symptoms including muscle pain and aches throughout my body, stiffness, crushing fatigue, unrefreshed sleep, difficulty with cognitive tasks (“brain fog”), all of which worsen with physical, cognitive or social/ emotional activity. It has meant that I have had to stop working. I was forced to take a massive pause in every aspect of my life and re-evaluate the way I was living it.
When people ask me how this happened, I initially chalked it up to bad luck and traced it back to an infection that triggered the illness. After a period of reflection over the past year, I have come to realise that my body was trying to send me warning signs years before I became ill.
We live in a fast-paced environment. Whilst technology has improved all our lives significantly, it has also done something else – it has resulted in a society where most of us are left breathless trying to catch up with our responsibilities. I, like many other Australians, worked long hours, had really high expectations and goals set for myself and felt under constant stress and pressure.
So how did I get here? My warning signs over the years included stress related conditions such as heart palpitations, onset of severe migraines, numbness in my limbs, alopecia, insomnia and a weakened immune system resulting in constantly getting sick. Yet I ignored my warning signs. I continued to push myself to the absolute limit and I truly believe the result was my wake-up call. It is true that my condition was ‘triggered’ by a bacterial infection I picked up during a work trip to India. But it was one piece of the puzzle in what I now call the perfect storm which landed me here. My body had a meltdown.
So now that I am here, what now? The past year has been incredibly challenging. I have experimented with many different treatment options, some of them have helped, many of them did not work. There is also nothing like a huge dose of adversity to kickstart some self-growth and shift in mindset. Everyone will have their own experiences and what works for them. However, I want to share some things that I found really helped me increase my quality of life over the past few months, in the hopes that it may help someone else:
- Find the right team of health professionals to support you.For me these include:
Medical and other health practitioners who assist me to manage my illness from a biopsychosocial context. It has taken time to find the right mix of therapists which has required time and effort but is essential.
This team helps me by liaising with each other and with my workplace. They’ve introduced me to the concepts of holistic health and well-being and the importance of incorporating meditation, brain training, brain training (neuroplasticity) and Qi Gong into my treatment plan. I have learnt how to pace my daily routine in order to prevent flareups of pain and fatigue. I have learnt how to undo abnormal movement patterns and to move with more ease and freedom.
Having a chronic illness is a very emotional experience. Every time I had a setback, I was an emotional wreck and was unable to move forward in a positive way – which worsened my symptoms. I see a psychologist whenever I feel I need to check in and work through strategies for coping with the illness.
- Have a daily routine –
My daily routine includes meditation, breathing exercises, gentle exercise (Qi Gong practice), cognitive tasks and short walks.
- Meditation practice / Breathing exercises
I attended the More than Meditation Course twice over the past year to solidify my practice. Meditating frequently (3 times a day) has given me the tools I need to manage my symptoms by calming my central nervous system. The added benefits include more control over mood and emotions, better sleep, and overall wellbeing. I also do regular breathing exercises to ‘wind down’ the nervous system.
- Gentle Exercise
I incorporated a 15-minute Qi Gong practice recently as part of my daily morning routine. I found that instead of doing something once a week and spending a week recovering, by incorporating Qi Gong into my daily routine, my body started adapting and I have started reaping the benefits after just a couple of months.Exercising when you have a chronic illness can be very unpleasant. I tried a variety of things including yoga, hydrotherapy, weekly rehab with a physio. None of these things worked for me and I realised the reason was because of the frequency and level of difficulty of the exercise. I found a gentle movement meditation practice , Qi Gong.
- Daily walks-
I do daily walks twice a day (morning and afternoon) at approximately the same time each day. My physio explained to me that I no longer felt confident or safe doing simple things like walking, as I associated this activity with an increase in pain. By simply having that expectation, I was feeding the pain cycle. So, he recommended I “smell the roses” when I go for my daily walks so that I wasn’t thinking about walking. I just walked. I have managed to increase my walks from 5 mins to 20 mins (with minimal flare up of symptoms) in just 10 weeks! And that gives me immense hope that my brain has already started re-wiring and thinking about activity differently.
- Sleep hygiene-
One of the most important changes I made was sleeping and waking at approximately the same time every day. I stopped letting my pain dictate when I woke up, unless I was having an extremely severe day. And I ensure I get minimum 8 hours of sleep per night.
- Cognitive exercises/ tasks-
I have learnt the importance of incorporating cognitive tasks into my daily routine, especially as I am not working. I try to spend at least 2 hours a day doing computer tasks, reading, sudoku/ puzzles, memorising poems, writing poems or doing something else which engages my brain in a meaningful way.
- Diet –
Diet is something I am still figuring out. The Keto diet didn’t work for me however I have completely cut out processed foods, sugars and am still on a low carb diet. I find that carbs and sugars result in a flare up of symptoms.
- Social connections –
It is important to continue connecting with people (for your mental health). I stripped back my social life and now only see my friends and family one-on-one or in smaller groups and spread out my outings. When I can’t get out, I pick up the phone.
- Tap into your creativity! –
One of the greatest gifts I have been given during the past year is finding a new passion – writing poetry. I use poetry as a form of expression, and it helps me to work through my feelings and emotions.
I still have a long way to go in my journey to recovery, but I am optimistic that I will get there! One day at a time, and with the help and support of my health team, my family and friends.
Written by Shoba