A few weeks ago I felt inspired and started writing...and writing...and writing! Before I knew it a whole manuscript had emerged based on my experiences with Chronic Fatigue Syndrome.
My most ambitious project to date, a book is titled, TOO TIRED TO THINK! It is a practical guide on how to live with long-term fatigue, covering Chronic Fatigue Syndrome, Fibromyalgia and long-COVID.
Please enjoy a preview into some of my story.
Hi, I’m Sarah Vizer.
I’m a vibrant, motivated type of person. I’m also someone who has lived with the devastating effects of long-term fatigue for over 6 years.
It was July 2017 when I took a 2-week break from work. Despite being desperate to return to work, I was never able to do so. I later discovered I was suffering from the effects of what had started out as corporate burnout and later developed into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
ME/CFS has ruled my life during this time in so many ways. I’ve felt the lows and the even deeper lows that accompany this condition. I’ve also felt the joyous highs that arise from feeling energetically alive and getting your life back on track.
As a researcher of both facts and stories, my goal is to bring to life both the journeys and solutions from those of us who are navigating this difficult condition so I can help others, perhaps even you, in a meaningful way.
If this is you, I want you to feel seen and understood at a time that can feel isolating and lonely. I want you to feel supported and know you are not alone and there is a (sometimes twisted) pathway towards improvement. Lastly, I want you to feel hope that you can learn to embrace your current reality and eventually navigate through it to feel the joy of at least substantial improvement, if not full recovery.
You will share my journey with fatigue, including the current phase of (tentatively hopeful) recovery, rediscovering my new normal.
Sarah
My decline into fatigue...
I often tell the story of my 2017 corporate burnout which came about after an insanely stressful period of life. I researched burnout extensively and came to understand all that it involved. I showed all the tell-tale signs – the exhaustion, the feelings of cynicism and negativity and low self-esteem. Burnout was not fun, but the literature pointed to the fact that I could be confident it would eventually resolve, and through it all life would go on.
And it did – resolve that is. In all ways but one…my exhaustion had set in. The part of my burnout story that’s harder to get my mind around (and I don’t often talk about) is the debilitating fatigue that seemed to take over not just my body, but affecting every part of my being…mind, body, and spirit.
It sometimes happens this way. Fatigue can trigger from a virus or other illness – either explained or unexplained. It can also seemingly come from a life event. In my case it was a build-up of toxic stress that led to my burnout event. High levels of stress over a long period of time can trigger all types of chronic health issues, and I now know that ME/CFS is one of them.
This exhaustion stuck around long after all the other burnout symptoms resolved. My mind healed and I was ready to move onto the next chapter of life, but my body could no longer keep up with this raring ambition
A previously conscientious and ambitious type of person, I was increasingly unable to cope with everyday demands. Out of necessity I stripped away at life, cutting back, trying to make life more manageable. At the beginning all I did was cut out the things that gave me pleasure. This left only work, a miserable place to be.
Eventually I was forced to stop working altogether. I wasn’t sleeping well and never felt refreshed, even though I slept all day. The things I used to get pleasure from became too hard. The people around me tried to understand, but how could they. Their responses ranged from concern, to trying to motivate me, to leaving me alone as they didn’t know what to do.
The reality was the effects of fatigue were invisible to most people. My eyes were bright, my skin clear. I looked the picture of good health from all the different supplements my doctor had me taking. But I was so unwell and didn’t have the words for the gut-wrenching exhaustion I was feeling all the time. I was indeed just too tired to think!
It was about 2 years into my journey with fatigue I started to accept that I wasn’t going to be able to return to my old life. I needed to let go of that Sarah from the past. The new Sarah? It was one I did not want to accept. One that lived with a debilitating illness that the medical profession couldn’t really tell me much about.
What life was like for a while…
The messy middle part of my journey was a long 6 years struggling with ME/CFS. They were often lonely years as my friends and family struggled to understand my situation, no matter how hard I tried to explain it to them. When you tell one person, and they react badly, you become reticent to tell the next. It’s just easier to keep it all in.
The fatigue was inside me, affecting every moment of life – waking and sleep. I felt like my body let me down time and time again as I tried to get back on track to the person that I once was. Daily, my mind’s ambition far outstripped my body’s limited capabilities.
During this time, I discovered firsthand what’s it’s like to live at the extremes:
When your energy is so low it becomes a choice between feeding yourself or having a shower.
When it feels like every fibre of your body aches and even lying down feels too hard.
When you desperately want to go to a long-anticipated event with family and friends, but your body won’t allow it and an aching loneliness then seeps in.
I also know what it’s like on an everyday basis:
When you wake up unrefreshed but push on because you desperately don’t want to let anyone down.
When you cry secret tears of exhaustion because you’re sick of trying to explain your tears to others.
When you have a great day and accidently over-do it, only to pay the exhausting price for days later.
Needless to say, there were some dark times across those 6 years. But it’s not all bad and there were plenty of good times and even some great achievements in there as well.
I was seeing as many medical practitioners as I could manage on my limited energy and finally, I started seeing improvement. I focussed on my health and worked as hard as my body allowed.
I learnt the art of chipping away at big projects. From small amounts of daily effort, big things can arise, and my burnout program was born. I’ve also become a successful leadership and mindset coach and love working with my clients.
The best thing I did was find my pup Oliver. Oliver was always at my side and motivated me to get out of bed and take him for walks, no matter what. His love of life was pure joy and he loved me to the exclusion of all else. I sometimes wonder if I’d even be here at all if it wasn’t for Oliver. It always seemed like Oliver understood, even when no-one else could.
Another highlight of this time was meeting my partner Demian. Let this be a lesson that love can spring from the craziest of circumstances. Even when I was at my most fatigued, Demian could still see the burning energy inside me and to him I was the most energetic person in the room. This felt like a gift of what I wanted most - to be seen and understood.
What life is like now…
My life now, 6 years on, is a massive improvement. I’m still affected by fatigue every day and need to pace myself. I occasionally cross that imaginary line and do too much only to face the exhausted blowback. But I’m also very aware of my limits and mostly I find ways to stick to them.
The amazing thing to report is I’ve reached a consistency in my energy levels that allows me to trust in it again. Hallelujah, I am no longer too tired to think!
This means I can plan my day and know that I will stick to that plan. What a gift that has been. I am once again working, regularly attending social events, planning travel adventures, and making my difference in the world!
I once heard the line, ‘Objects in the rear-view mirror will always appear better or worse than what they actually were’. For me, ME/CFS is both things:
It appears better as I’m a natural optimist and tend to gloss over the bad and focus on the good in life.
It also appears worse as the level of pain, loneliness, isolation, and sheer frustration of this time feels imprinted in my soul.
One thing has become very clear from this time - what I’ve experienced has been a course correction and a gift. The trigger for ME/CFS, my burnout, came out of living a life that wasn’t right for me. I wasn’t doing anything about it, so when my mind wouldn’t listen, my body shut down effectively making the course correcting decision for me.
Calling ME/CFS a gift might seem like a bit of a stretch, but really it has allowed me to grow, changing the trajectory of my future.
I’ve had a major rethink on life and what I want out of it. I’ve changed my goals and started shooting for new heights. I’ve sought advice and opened my mind to new ways – things like meditation, pacing, career changes, even expanding my friendship circle. I’ve read countless books, listened to podcasts, and discovered ideas which inspire me. I’ve tapped into what we call purpose and passion and allowed that to lead me forward.
Most of all, I’m happy!
When you’re in the middle of long-term fatigue, seeing all of this is not possible. It’s only now I’m emerging from its tenacious grip that I can truly recognise and acknowledge the growth it has brought me.
Anyone can get sick. Enduring the battle with a condition like long-term fatigue shows you the depth and strength of a person. By continuing to battle even when you feel at your weakest demonstrates your admirable resilience. From this, it’s how you rebuild, putting yourself back together, that makes you the person you are today.
It can be magic, and hell all rolled into one!
Why I’m writing this book...
This is not a sad story. Rather it’s a book about hope and dreams. It’s triumphant in the outcome, but it’s also honest about the frustration and hurt it took to get there.
I am not a medical professional. I am a normal person who has gone through a rough period, and I want to share that experience. This is not second-hand knowledge. It is my own lived experience, supplemented with the stories of others also navigating long-term fatigue across all walks of life.
These stories are important. They are representative of an increasingly number of people who struggle with long-term fatigue. The more I research the more I realise the magnitude of the problem, particularly now we have so many people around the world affected by long-COVID.
You are very likely to have someone in your life who has been affected by fatigue - either you directly or a parent, partner, friend, co-worker, neighbour or other loved one. Educating yourself on this experience is the best gift you can give yourself and them.
I dedicate this book…
To you, who in any way, shape or form is going through this debilitating condition to find the support and understanding that you deserve.
And for your loved ones to strengthen your bond and allow your relationship to flourish based on mutual understanding.
I wish you so much love as we all navigate our healing journeys.
Sarah Vizer is the creator of Beyond Burnout.
As a Leadership and Mindset Coach she supports our top professionals unleash their talents, feeling and operating at their best.
She offers individual and team support for you and your organisation.
Find out more at www.sarahvizer.com