It’s been six years since I last wrote on here, but I’ve had a number of comments on this blog lately and thought I’d pop back on here to report back… The great news, I’m still healthy. I’m fully recovered and living my life as I want to, not how some illness dictates me to.

I’m working full time, doing plenty of physical activity including hiking and rowing and skiing, have a full social life, travel lots and no longer measure my energy in spoons and credits, it’s just there and bounces back each day… despite what most of the internet told me (in doom-scrolling moments) you can recover – I am living breathing proof yes!Some major milestones since I got better:

• Worked full time in the same job for 5.5 years in a busy corporate environment
• Rebuilt my career that was wrecked by CFS progressing from Office Manager to Executive Assistant to Executive Manager to Acting General Manager
• Travelled solo to Bali to go on a surfing and yoga retreat
• Hiked the Milford Track in New Zealand this time last year, 53km over 4 days
• Multiple ski trips across the past six years, skiing for three days with four or five hour drives to the mountains and back
• Weekly dance classes just for fun
• Rowing in a regatta as part of a quad skull
• Many walks to many waterfalls in the Otways
• Attended week-long intensive professional development program
• Flew interstate for week-long conference
• Hiked the back half of the Great Ocean Walk over four days for 65km with a 20kg pack
• A season of netball, dodging around the court at full speed
• Yoga, cooking and hiking retreat in France
• Overnight snow hiking
• Babysitting my litle nieces and nephew, something that felt impossible when I was sick
• Went to several weddings with no payback other than a standard hangover even after carving up the dancefloor
• Countless kilometres walked with dogs around the park each day

For those of you reading who are still sick I’m often asked what I did to get better… I did many things and tried many options and I believe each individual needs a different approach, but there are some common elements that might help. The biggest one for me was to stop the cyle of pushing and crashing and find a baseline from which to build from. And that is hard. And then to progressively overload all parts of your life from there – and I mean super progressively, it’s slow.

I believe CFS is caused when something switches your nervous system into overdrive (for me it was chronic stress plus an intense virus) and it gets stuck in fight/flight/freeze (to me it makes sense that it’s an extreme form of freeze). This is discussed by doctors but there isn’t anything definitive yet. But to me it made a lot of sense, so I needed to calm that nervous system down and prove to it (ever so slowly) that it could handle doing things again and get it out of the sympathetic response and into parasympathetic (rest and digest) more info here on that. That meant progressive overload in every part of my life, lots of meditation and breathing exercises to help get me into the rest and digest mode, and a whole lot of mindset work to celebrate the small (oh so small) steps I was taking towards recovery. I wanted a magic wand but there wasn’t one, it took me 4.5 years. Once I started doing the right things to help myself the recovery pace sped up, but the start was sloooooooow and bumpy as I didn’t know what to do. As we all know the medical world is not helpful with this illness. So what did I do? I joined CFS Health’s recovery program which was invaluable and is the reason I’m better. Go find out about them here: https://www.cfshealth.com/. In a nutshell they helped me with two important things:

• how to manage having the illness
• how to recover from the illness.

And these are two distinctly different elements that both need attention.

They taught me:

• So much about finding a baseline (what you can do each day without feeling worse the next day) and progressively overloading from that baseline.
• What to do in a setback (and how to handle the emotional toll of going backwards).
• How to rebuild my muscle after months in bed and deal with the muscle and nerve pain with restorative movement without doing too much and making myself worse (starting with yoga in bed, wall push ups, stretches etc and very slowly progressing to yoga on a mat, short walks, planks etc but at the slowest pace you can imagine so as not to overload my nervous system and to show it, hey, see, you can do this!).
• How to see setbacks not as the enemy and a failure, but to view them as evidence of what you can and cannot do, and data to input into your next attempt
• To track my energy outputs and understand the energy credits or spoon theory to recognise what was triggering my symptoms.
• To understand the elements that gained me back credits/spoons such as meditation, preventative rest, pacing, gentle movement.
• How to approach difficult or overwhelming activities by making a plan for them (I still made it to several friends’ weddings by having naps in the car between the ceremony and reception, heading home after entree, and planning to spend time in the quiet of the bathroom for 10 mins to deal with sensory overload)
• How to approach my recovery with a progress over perfection approach and learn to find the evidence that I was improving and celebrate that
• To understand and practice meditation to help calm down my nervous system
• How to apply the principles of pacing and progressive overload in all areas of my life including movement, but also reading again (going from an audio book to a page, to three pages, half a chapter etc), cooking again, socialising more
• To pace my way through activities so I still got to live parts of my life – phone calls with friends with pre-confirmed time limits so I didn’t spend all my energy in one go and find it hard to say I had to go, writing this blog in shifts with an alarm going off to stop me when I was in the zone, cooking again but splitting it up into getting the ingredients out, then resting, then mixing the ingredients, then resting, then cooking.
• To journal on the elements of my day and keeping track of this to see where I was spending energy so I could understand symptoms
• To see symptoms as messages from my body not just hating them, but learning to listen to them (noticing I was struggling to follow a conversation and leaving then, rather than waiting til I had sweat running down my back and hands were shaking)
• How to focus on food being fuel for me, not cutting out food groups but making sure there was food going into my body that gave me energy (in a world of toast and eggs I made a rule there had to be 3 colours on the plate to be energy food)
• How to choose who I spent time with and not persist with friendships that cost me energy
• How to believe I would get better, and cling onto that hope.

I also did the following things:

• saw a psychologist to help me with cognitive behavioural therapy and mindfulness practices
• took anti-depressants to help me manage my low moods when I was too unwell to do the things the psych and CFS health were teaching me (I no longer take them but believe they did help me cope, they did not take away the CFS)
• kept this blog to document progress and give me a creative outlet (as well as help explain to others what was occuring)
• saw a myotherapist to help with the muscle pain I experienced
• saw an accupuncturist to help calm down my nervous system (especially in a crash)
• focussed on stories of recovery (particuarly two friends I knew who were evidence it was possible)

And when I got Covid-19 twice in the last few years and it utterly smashed me with a week of fevers and pain and fatigue I was scared, really scared. When the fatigue lingered long past others around me who’d had the illness I was terrified – I couldn’t go back to CFS. Both times it took me 3 months to come good, and it was a gradual improvement, just like CFS (but for months not years thankfully).

What did I do then?

• reduced working hours to what I could manage (as my boss said he’d rather have me part time than not at all – knowing my health history)
• did preventative rest a lot (before an online meeting I lay down for 15 mins with my legs up the wall and listened to a podcast, before I drove somewhere I napped for 20 mins with music, if i knew i’d walk a long way the next day I did minimal movement that day)
• paced myself so I could still get things done, but in an effort-rest-effort-rest format (packed the car to go home to my parents in three shifts, with a tv episode in between)
• said no to lots of activities I knew my body couldn’t handle yet and believed it would be able to handle them soon
• took notes of what I was doing to better understand where I was spending my energy
• focussed on good nutrition and gentle daily movement (like walking 100m to start, then building from there, four yoga poses then building to five, seven, ten, fifteen)
• brought back lots of meditation and breath work into my life to calm my nervous system down
• showed my body it was ok by progressing really slowly and resting when the symptoms flared
• did all I could to avoid crashing and getting worse
• believed I could get better. And I did. Twice.

I suppose my summary for those reading this is, you have to change what you’re doing, you can’t just try and push your way through. You need to find a baseline that doesn’t see you feeling worse the next day, and progressively overload from that. You need to find ways to calm your nervous system down and prove to it, slowly, what it can do. And eat well, move gently, rest often and pace your way through big days. Pushing and crashing will never see you get better. Progressively overloading and seeing setbacks as data as to what you’re capable of and adjusting from there, to me, that’s the key.

For those reading who are still sick, I’m so sorry you’re going through this, it is the absolute worst. I clung on fiercely to the belief that I could get better, followed stories of others who had, and celebrated every win along the way that showed me I was progressing. And I worked bloody hard to get there. I’m beyond grateful to be well again, and when I got covid I was grateful to know what to do… I hope my story can give you hope for the future.

I was recently on CFS Health’s podcast, have a listen and watch below if you’re interested (they have so many inspiring stories of recovery and lots of practical tips too).

Suze