What does a day in the life of the deeply healing look like?

Going against the grain and staying true to what is.

Jul 03, 2022

I’ve been asked a few times since I had to give up my full time (and then some) work, my career, a decent income and my life as I knew it due to chronic illness, “what do you do all day?”

A question I could never previously answer, as someone who was living with less than 50% brain function at any one time, several different types of disabling and debilitating migraine, chronic fatigue, fibromyalgia and tinnitus. Add to the mix, extreme levels of anxiety and severe depression, I have to say, it didn’t leave much room for anything outside of that.

woman wearing dress and lying on teal cloth — Photo by Alice Alinari on Unsplash

When I look back now, I was always up and out of bed early on a morning, despite seemingly having nothing to get up for.

I cheerlead on any chronically ill person who manages to do this, because although it isn’t yet recognised as an achievement in today’s world, this is cause for big celebration to anyone doing this day in and day out who is fighting a battle that no one else knows about.

The only thing that ever stopped me physically getting out of bed was very severe to agonising pain. Happening mostly several days a month for YEARS and, at its peak, 6 days a week.

I wouldn’t always get dressed on the days I got up early. I’d often answer the door in my pj’s. But, still…

Once out of bed, I would free flow journal and make a healthy, nutritious breakfast. Throughout the day, I would incorporate mainly anti-inflammatory foods as part of meals and snacks. I had been told by a neurologist “I wouldn’t bother” when I asked about making dietary changes. But each day, I would get up and keep making them anyway. Teeny tiny changes to what I was eating and drinking, teeny tiny changes to the way I was living life, teeny tiny changes to the way I was managing stress, one small change at a time.

pasta dish on brown plate — Photo by Brooke Lark on Unsplash

I don’t know where it came from, but I do know what it took to reach this point of self-reliance; one day I suddenly woke up with the belief that “I matter”….”my health matters”. When I look back, I see that I imbedded that belief into each and every day.

Mid-morning, I would incorporate some form of movement. Though I could no longer ‘exercise’ in the way that I previously viewed it, deep down I knew that if I had any hope in hell’s chance at all of getting better, movement had to be part of it.

I made a commitment to take a daily walk outside. The reality of this commitment was that it was more like every other day, then some periods of missed days when I was bed-bound.

The walks were super slow to begin with. My power walking days were long gone. I had to sit down during a short walk to rest. But over time and with persistence and consistent commitment to movement, my strength slowly increased, and I could walk 3k, 5k and within a couple of years 7k.

By the time I was unable to work and was signed off long term sick, I hadn’t read in years. One of my life-long loves and passions had fallen by the wayside as I lived a life of fatigue instead, eventually leading to burn out. So numbed out with alcoholic and caffeine infused energy drinks, many cups of coffee a day, constantly grazing and binging food, catching up on all the soaps/latest new series, working over 50 hours a week, Saturday shopping and partying hard, I hadn’t even realised I’d been living with fatigue and running on burn out, until long after I’d broken the chronic pain cycle.

Lunchtimes, I read, maybe teatimes too. Reading became a big part of my day. Arming myself with as much insight, knowledge and understanding to this bastard disease as I could. I was so determined that there must be a way to get well. I just couldn’t grasp the concept of this way of being, being incurable. I couldn’t fathom that this was how my life was meant to be. I didn’t believe it. 4 years later, experiencing a 50% improvement year on year, I still don’t.

I read and I read. Books, articles, reports on migraine. Books on so many topics; hormones, self-help, healing, trauma, memoirs. Never-ending research, training, workshops, webinars.

woman in blue long sleeve shirt and blue denim jeans sitting on bed using laptop

Over time, yoga also became a part of my daily life. Starting with one breathing exercise and a guided meditation in the afternoons, usually a healing one. A couple of years on, over the lockdowns, I did loads of healing meditations throughout the day and experienced healing to my brain as a result.

Some form of gentle joint movements too and, often, sleep mid-afternoon.

When I was given a 3-minute breathing exercise by my healing coach to do every day, my first thoughts were “where the f*ck am I gonna find 3 minutes a day from?”. That’s the thing with being chronically ill, you see, it’s a 24/7 job. Every second of every minute of every hour of every day is consumed by illness, pain (often to unimaginable and unprecedented amounts for prolonged periods of time) and dozens of symptoms. Whether you visibly see it or not. Mostly it’s invisible. And on the back of the first dozen or so changes I made, I looked so well.

It’s been hard for those around me to understand why I wasn’t following doctors' orders, listening to the qualified neurologist (after all, he is the specialist). Also, why I haven’t gone back to work, why I’ve made the pain-staking choices and changes that I have, why I’ve put in place so much support for myself. Paid for it as well…

Each change I made, I went with what my body was telling me and what it was asking of me. Demanding of me, screaming at me. Giving me no other option, no other way out.

My days didn’t become like this overnight. Each change and each new practice were either intuitive to my body and it’s needs or what I learnt based on research.

Initially, research was not easy to come by, nor readily available. To get started, overcome all this AND make the changes has taken a strength and determination I never knew existed.

Every single change I’ve made went against the grain of what I was told was possible, worth doing, what I should and shouldn’t be doing. I’ve been told what everyone else thinks are right or wrong for me based on their judgements and opinions, yet, still, to this day, I’ve only had one person in my life step forward and suggest they would like to research and understand this complex condition so they have an idea of exactly what I’ve been contending with and going through all this time.

In the earliest days and, as I was getting to grips with a very limited day-to-day life of chronic illness, slowly learning about all this and contending with outside voices as well as my own, I would spend long periods of time in my egg chair staring out of the window at the trees. At the time, I didn’t understand why I couldn’t move or “do” anything. Around that, I would sleep and nap during the day. Now I see this as deep rest, a much needed and essential part of the healing process.

Without doing what I’ve been sat around all day doing, I wouldn’t be where I am now. I wouldn’t be as well as I am now. I wouldn’t be experiencing more and more joy in each day. I wouldn’t have found my true purpose in life. I wouldn’t be reconnected with and following my dreams. I wouldn’t be the light we need to see in the world right now. I wouldn’t be the way shower that I am. Showing you that if I can do it, you can do it too. What’s possible for me, is possible for you.