My journey on from illness (with compassion and love)

“and I said to my body softly, ‘I want to be your friend’. It took a long breath and replied, ‘I have been waiting my whole life for this’. Nayyirah Waheed.

I could never have known that during my 3 year long and painful journey from sickness to wellness, that I would learn so much about the need to find deep self-love and self-compassion. It’s ironic that it’s something that I’d always been able to do for others, but not quite for myself.

My journey, which included breast cancer and then Chronic Fatigue Syndrome (CFS), began in 2014. It was strange because this was all happening at a time when I felt as if I was at the pinnacle of one the most positive periods of my life.

I was about to complete a 5-year degree and finally move into a career that I was passionate about. I was also excited at the thought of finally having a decent income and only one main thing to focus on. But then, life took a turn. A huge, phenomenal detour.

I was thrown into a horrible, hard, lonely and sometimes terrifying cancer journey. Then, having survived it (which I’m eternally grateful for), I was propelled in to a deeper and darker world. I was shaken to the core, when 6 months later, I had CFS.

At the time, I thought ‘what the xxx is going on?’ I simply didn’t see it coming. But now, looking back, I sometimes wonder whether I did.

You see, I was (and am) an ‘A type’. For me that means, driven, passionate, a doer and ultimately, a lover of life. I’d always been someone with a huge appetite for new and exciting experiences. I had unbound energy, enthusiasm, dreams and great optimism, often way beyond what most people deemed normal. But, CFS stopped all of that.

Overnight it literally turned me into little more than a shell. I experienced fatigue so severe that it felt as if someone was permanently sitting on me. There were electrifying headaches, 24-hour insomnia and when I could sleep, anxiety attacks so horrifying that I woke in a panic induced sweat.

The symptoms were relentless. They could change not only daily, but sometimes hourly. But the worst of it for me, as a runner and nature enthusiast, was at one stage not being able to walk properly. I felt as if I had ‘elephant legs’ that wouldn’t move the way that I wanted them to. I remember holding on to a railing and dragging myself along and looking at people and thinking, ‘how are they walking?’. And so it went on, day after day after day after day, often without signs of an end.

I know that CFS is controversial and I’m not here to defend my recovery. It was, and still is, a daily discipline for me to live well. But what I wanted to share and what I hope will resonate with you, is what helped me to navigate the choppy and uncertain waters of illness to wellness.

There are many things that I tried to help myself recover. Many things that didn’t work. But some did, and I eventually found a new way of being and a new, much better (for me), ‘normal’. So here it is, a few things that helped me along the way.

  1. Accept where you are and move forward gracefully

One thing that I didn’t realise was just how much courage, energy, strength and tenacity it takes to recover from illness and to get through, as a (whole) functioning human being.

As I began to recover, I still wondered whether every twitch, ache or show of pain was a sign of the CFS reoccurring. Sometimes aspects of it were, but mostly they weren’t. The only way I could get through was to see these ‘blips’ not as a punishment, but as a tiny (God) whisper saying; ‘you’re okay. Look at how far you’ve come. Stay on course. You’re doing well’.

  1. Step out like a well person

A strange thing can happen when you’re sick. Not only can you lose confidence, but you can literally stop knowing what it’s like to feel ‘normal’ or well. It can be really horrible, and this is one of the things that definitely kept me stuck. But I got a tip from Dan Neuffer (ANS Rewire) which helped me hugely in the process of moving on. His advice was to ‘believe you’re well’.

Although this may sound a little like ‘fake it, till you make it’, it was hugely powerful for me. When I ‘acted’ as if I was a well person, I found that I could go minutes at first, then hours, to days where I stopped holding on to the ‘sickness’ label. Finally, I found periods where I caught myself thinking ‘wow, you’re normal. You’re a well person.’ And although I wasn’t totally, I was a little. And then I was a little bit more, and then, a little bit more still, until eventually I could go for days when I knew that I was (although not fully recovered) at least getting better.

  1. USE your tool box

The paradox of my illness was that although I didn’t ask for it and wouldn’t want to go through it again, I gained so many valuable tools to get me through everyday life. Some helped me deal with the immense physical pain. Others helped with the mental and emotional pain. Others helped me to focus on the good, to treat myself well and to enjoy the small things.

I found a renewed pleasure in eating well, prayer, meditation, yoga, journaling, putting myself first, being around positivity and truly enjoying life. These days I still slip, but these tools quickly take me back to a centred place. Ultimately, they now take me to a place where I can choose my focus and where I can enjoy living a life of wellness.

  1. Live day by day

When I was sick I couldn’t do anything but live day by day. It’s still such a guiding disciple for me. However, the ‘A’ type achiever in me always tries to equate living this way as giving up or at least surrendering. And as I’m the sort of person who can ALWAYS do more, she tells me that, ‘by NOT doing more’, I’m somehow failing!

Thankfully these days I can quickly feel when I’m pushing too hard and overstepping my limits. In many people, pushing and achieving could be motivational, but for someone who is nearly always able to muster motivation, this is a clear red or at least amber sign for me to stop or at least slow down.

Being ill taught me that it’s not a weakness to live within my limits. So instead of mindlessly doing, I try to ask ‘what is it that I need to surrender?’ And ‘what do I need, to be fully well?’ Sometimes it’s a bath, bed and a book. Good food definitely, less computer time, or a long walk. Whatever it is, I give it to myself within that day (if possible) and then let go. And I don’t always get it right, but I pay the price when I get it wrong!

  1. Have a routine

This seems hilarious to the free-spirit within me, but this literally saved me. I realised that freedom only came when I had balance, anchors and structure. So, now some years later, I still begin every morning with a routine. This calms me and sets me up for the day ahead.

It simply ensures that if something gets in the way during the day, that I’m able to move from amber to green, rather than amber to red. It’s not always easy but doing this can lessen my stress response and stops (or calms) my negative spirals.

  1. Give yourself permission to enjoy

This was a really tough one for me to learn because I was and had always been so hard on myself. But when I was ill, I had no choice but to be patient and compassionate with myself. Still it was confusing and painful because I could see the endless days of nothing passing me by and I felt that when I had a good day, that I had to make up for lost time. In my mind, loss equated to the weeks, months, and years that I’d been ill and not worked, or been inactive, or unproductive. I couldn’t see any good in that.

Also, later as I was recovering, I saw that when I’d done something fun, enjoyment tended to cross and get caught up with my ‘A’ type ‘achiever’. I saw how I used to blow things completely out of proportion. For example, my love of cooking and experimenting with new dishes could so easily turn from a fun time for me or with a few friends, to a frantic free (must be done) tasting session for 30!

Yes, that did nearly happen. What on earth was I thinking? And sadly, there are so many more examples of that craziness. It’s not that there’s anything wrong in taking things to the max, living life to the full is what I love doing most, but if there’s no fun. Then, it simply isn’t, well fun. What’s the point?

I still falter, but when I get it right, it’s bliss. These days, I work hard, but I also honour myself. I have days off, rest and enjoy fun periods just because, I so deserve it. And I do it in a full-bodied way.  Even better, I now have an awareness that when enjoyment becomes about only doing, striving and achieving, it’s not fun. It’s often simply me being off balance.

  1. Accept yourself in the fullness of who you are

I’m grateful that my body continues to tell me when I’m out of balance. But I know that I’m an A type. I always have been and (to a certain extent) always will be. The thing is that, greater awareness, means that I can now use my A type energy in a good way.

Yes, I can so easily over-ride my useful inner intuitive friend, but I also have a choice. This choice (with awareness) means that I can let my (A type) personality also guide me to exciting new ventures and opportunities. But during my illness by listening to me (all of me) and by shutting out the noise, I was helped to get through those painful illness years. And this inner guidance still continues to help me to this day.

I learned that no matter what the outside world was telling me that I had to fight for me. I had to fight daily to take time out, to be present, to be whole and to be who I’m meant to be. More importantly, I had to do it with deep compassion and love for where I was and how far I’d come.

This is a little of my journey. The story of where I was and to a certain extent where I am and it continues minute by minute day by day. I really hope that if you’re reading this and are sick or have been unwell for a length of time, that you are able to find ways to be loving, compassionate and kind to yourself. This is penned to you with love X

 

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