For those of us on the cancer journey, fatigue tends to be an ongoing issue. I don’t know about you, but I’ve had trouble explaining what this means to those who have never been through cancer. It is getting them to understand what we feel like when we say we are tired. Their tired means something totally different.
There are multiple meanings in each of the phrases – tired, fatigued, and cancer fatigued. Maybe I can shed some light on what tired, fatigued and cancer fatigued really means from our perspective. Hopefully my insight will help you explain it to others.
Tired means I can usually accomplish some tasks, work modestly, push through the tired and rest later. This is normal fatigue to most people and certainly was to me before cancer. You’ve heard me mention before that I trained as a professional dancer. We learned to push through the boundaries of tired to excel at our ‘sport’ and be able to perform under less than ideal circumstances.
Tired and the training I got as a dancer, certainly helped me push through times as a Mom when I just didn’t feel I had any more to give but had people counting on me. Most of us know that scenario. This happens in work situations as well when a project on a deadline just has to be completed.
Tired is a part of normal life. It happens to us all. We deal with it.
Fatigued means being at the bottom end of tired and having very little to draw on to push through to complete a task. It’s a warning sign to pay attention, get more sleep, eat better, take on fewer commitments, or enlist help.
Fatigued is not a comfortable place to be and is a last resort position for pulling up energy from the bottom of our energy reservoir. This can happen when life just gets too busy, work demands have sucked you dry, or you just played too hard. In the latter case, hopefully you had fun in the process.
Most people will understand fatigue and the mind numbing, body aching place of practically crawling on your knees to move through the situation until the end. Probably caffeine has played a part in this push through effort. Not the best option, but it certainly works.
This is a whole different kettle of fish. I didn’t get this part until it happened to me. When I would try to share with my friends what this meant, I mostly got a blank look. They just didn’t get it. They understood the tired and fatigued part. What they didn’t get was my total inability to do the push through part.
Cancer fatigued means being totally drained of all energy. Your energy bank is flat broke. No matter what you do at this point, no more energy shows up to bail you out. You are done – totally.
It would frustrate me to no end, and still does from time to time, even after all these years, when I find myself in this place again. One moment, I have energy, the next moment it is completely gone. I have to go to ground, as it were.
I tried to explain to my friends that it feels as though someone pulled the plug and all my energy just drained out until my energy reserve was totally, absolutely empty. It could happen within an hour. I’d be going along just fine – or in a tired or fatigued state – and then all of a sudden find myself in the ‘cancer fatigued’ state. It can even happen without the warning signals of ‘tired’ and ‘fatigued’.
With this explanation, I would see a somewhat understanding look on their faces – not quite blank, but not fully comprehending either. They probably have never been there or experienced it. It’s hard to understand something you have not experienced.
Where these definitions became tricky
Returning to work is the first phase of trying to help people understand that you will not be returning with your before cancer normal energy levels. Your co-workers will look at you and see a ‘normal’ person. They can’t see what has happened ‘inside’ of you – the body/mind/spirit connection – or the effects of treatment. Therefore, they can’t even begin to imagine you won’t have your normal capacity for work. To be fair, some people will, but they may be few and far between.
This makes it tricky to meet their expectations for performance and a reasonable schedule to return to work in a graduated manner. Helping people understand the difference between tired, fatigued, and cancer fatigued may help you navigate these out of sync expectations.
Family will need to adjust as well because in the beginning, returning to work is about all you can handle. Priorities will need to shift and family may have to pitch in to help out in areas where they have always counted on you. This can be a learning and sharing time for everyone. For family, they will be called on to pick up the slack and learn new skills. For us, it is allowing others to do things for us when probably we have always done them. It’s often hard to let go and accept help.
Family and Friends
Over the years, my family and friends have actually started to catch the drift of what I mean when I say I’m tired, fatigued and in place of ‘cancer fatigued’ I say exhausted. They now know that I’m done and give me space to just rebuild my energy reserves.
This takes time, patience and repeated attempts at helping others understand the impact that cancer has had on our lives. This impact is not just in the time around treatment, but ongoing. It follows us to a greater or lesser degree throughout the rest of our lives. I would love to tell you differently, but from a personal perspective and conversations I’ve had with others on the same journey; it appears to be the norm. There are always exceptions.
What are the ramifications of pushing through this fatigue threshold?
We push through fatigue, if we’re even able, at our peril. When we experience tired and fatigued, these are early warning signs, as mentioned above, to slow down, rest, and rebuild.
When you really get to the nub of the issue, we are not only weakening but also eroding our immune system. We need our immune system to be functioning to its highest capacity in order to maintain our health. Cancer cells can start proliferating when our immune system is down. We’ve now given them an opportunity to grow. That certainly is not something I am willing to do. I’m absolutely sure none of you are willing to do this either.
I have seen people go through treatment and slide right back into their old lifestyle. They do well for a while, but eventually I will hear that their cancer has come back. It’s no small wonder that that happens yet people are always understandably dismayed and frightened. With early detection, they may get a second chance to create a different lifestyle that will support their health. Unfortunately, that is not always an option.
It is not easy to create a new lifestyle. It is not easy to live your life outside what most people consider ‘normal’ – walk to a different drummer. It is not easy to give up our place of comfort to embrace something totally new. It does take courage and a firm commitment to your own health.
This may mean giving up friends who just don’t support what you need to do. It may mean changing how you earn a living. It may mean moving. It might mean a whole new understanding of nutrition, exercise, habits. It may mean a whole lot of things that will upset your way of being.
By making these changes, most of us who have done this work have found greater joy, fulfillment, a purpose / passion for life, and most importantly, our authentic self and health. What can be more important?
Life is too short as it is. By better understanding our own bodies and its limitations, we can stand up for what works for us. We will not be at the beck and call of others or feel the need to conform. We can be our true selves, strong and focused, able to advocate for our own health and wellbeing, as we talked about in last week’s newsletter.
Here’s to meaningfully sharing tired, fatigued and cancer fatigued to those close to us,