Illness or not, there’s a limit to how much energy an individual can have. There’s only so much you can do over the stretch of a day, and at some point you’ll have to drop in to bed and recharge for several hours. So the less things you have in your life that eat away at your energy, the more energy you have to allocate to tackling those to-dos and being productive.
Have a chronic illness? That’ll eat away at your base level of energy.
Of course, there’s the energy that goes into trying to keep the illness under control: navigating the medical system, speaking with different medical professionals, getting your prescriptions filled, and attending appointments.
But for many of us (including myself), there’s also a straight-up increase in fatigue.
On the regular, lately I’ve been getting upwards of 9 hours of sleep per night, waking up feeling unrefreshed, and taking a 1-2 hour nap approximately half the days in a week (often to try to sleep off a headache or excess brain fog). I often feel a tangible depletion of energy with any sort of activity—something as simple as going to the grocery store, or something a bit more involved like getting paperwork done—and often spend the last hours of the day in front of a screen with my brain shut off, scrolling through social media or watching a TV show.
In contrast, during the two periods I’ve been in remission I would regularly get 6-7 hours of sleep, have little problem waking up to get photos of sunrise (a past hobby of mine), and stay active the whole day. During one of those remission periods I was doing a full-time practicum at university, but still maintained a full calendar of extra-curricular activities. It felt like there weren’t enough hours in the day for everything I wanted to accomplish, and I rarely needed any down-time to myself.
Given that I’m doing neither the same quantity nor quality of things that I used to, it’s easy for casual observers to think I’ve just gotten lazy, and even for me to start questioning myself on whether or not I’m putting an honest effort into staying productive. Thankfully, every so often I have a good energy day which puts things in perspective and reminds me to separate my sense of self from this chronic illness, a distinction which can so easily become muddled.
On a good energy day, I still tire more easily than I would in the past. However, one major difference is that I have some extra mental fortitude to push through any physical exhaustion that comes up. This past Sunday I did a lot of spring cleaning, got rid of things cluttering up my living space, and brought some of these items to Value Village for donation. Initially I developed some backpain and pressure at the base of my skull, but I pushed through it and kept busy the whole day.
On a bad energy day? That same physical exhaustion would be accompanied by insurmountable mental exhaustion, no stamina, and the need to stop and lay down.
Maybe I’m just making a big deal of something small, maybe I’m not. But to someone with chronic illness who’s constantly encountering both external and internal reminders of how much “better” they used to be, it’s those small victories that can mean a lot mentally. Good energy days like this past Sunday remind me that it’s not a personal flaw in character or discipline that’s to blame for my reduction of productivity, but a flaw in my health. My raw energy levels fluctuate at random, seemingly independent of how much sleep I got the night before, whether I’ve worked out recently, or what I’ve been eating. All I can do, for now, is do the best I can to take care of my body and physically recover.
Here’s to the future where the good energy days outweigh the bad energy days again.
I can relate to this. My fatigue is not as bad as yours but I often do wonder if it’s just all in my head and maybe I’m just lazy or a whimp or looking for attention. My mum (who lives far away) visited me a while ago. At the time my fatigue was pretty bad but I didn’t talk much about it. I didn’t want to worry her. I thought I had done a pretty good job of hiding it. But she noticed. She noticed how hard I tried to be ‘normal’. When she told me that, I welled up with tears. I always thought it was invisible and it was a huge relief in a way that someone else could acknowledge it without me telling them.
You are not lazy! Xx
I hear you. It can be exhausting trying to get others to really understand what you’re dealing with if they’ve never gone through something similar themselves, which leads to the tendency to put on a brave face in front of everyone. But there’s also strength in being open about your vulnerabilities to those who will support you. Thanks for stopping by the blog 🙂
I have to say, this, what you write, used to be my life. A very sad thing about it was my husband actually did think I was being lazy, not quite sure why he would think all of a sudden I would want to quit living life, just take naps all the time and do nothing except maybe a little laundry. I often tried to share with him what was going on with me, I think he just thought I was complaining, but I was trying to get him to understand that it was my poor health, even though I kept trying to do everything I possibly could to get better, that this was real, no matter how much I wish that it wasn’t. Those were EXTREMELY rough times! You’re DEFINITELY NOT lazy!!
Thanks for your thoughts! I think it’s very hard for people looking on the outside inwards to truly understand the extent of the effects of health-induced fatigue on everyday functioning. It’s just not the same as regular fatigue. I’m sorry to hear you went through that with your husband, it’s hard when health seems to come between you and those close to you. I notice you speak in the past tense though – have you improved, and what from? If so, that’s wonderful and I hope that what I wrote in this blog post is long a thing of the past for you!
You can only do what you are capable to do, don’t exhaust yourself for worrying if your lazy you are not . Do not worry about what others think . You know what your bodies telling you listen to it.
Definitely a helpful thing to remember. I am pretty confident about my level of self-awareness, and so I need to trust my judgement and that I know what is best for my body to handle. Thank you <3
You are not lazy, just uninspired. I too have chronic fatigue due to an illness that runs in cycles. And when I am down, with no energy at all, I am utterly incapable of accomplishing anything. But I think it is the guilt and the awareness that nothing is happening that feels unacceptable to me, so I label it lazy. Spiritually speaking, I am without inspiration to do anything. I spent most of 2017 on the bottom. Struggling to increase energy with supplements, I realized (keep in mind I meditate regularly) that this inertia is just an energy I remain stuck to through my awareness of it. It was a self-imposed prison of my own mind. When I consciously directed my focus onto things that are active, even just thinking and pondering them, my body started to respond more actively. I totally understand the crashes and long periods of inactivity. But I am a huge believer in the fact that my mind does it all by itself and my body follows.
Thank you for taking the time to comment and offer your perspective. I was at the bottom in 2017 too and it was so hard to get through. But I am thankful that I am here today in a significantly better place, though I still have my demons and a long way up to go.
I like what you said about thinking of it as just inertia/energy that you need to get moving along. I hope you are in a better part of your fatigue cycle now, or that you are at least climbing upwards. Sending some positivity your way 🙂
I really loved your comment. I think there really might be something to this, I notice the days that are stressful at work are always the hardest ones to get other responsibilities taken care of. I think maybe a lot of it for me is a mental, spiritual, and emotional fatigue for me in addition to the physical symptoms. Thank you for sharing your comment!
I relate to this post on such a deep level. I mentioned in my last comment on your other post that I have endometriosis and I ask myself all the time if I’m just lazy, or if it’s because of chronic illness. It’s not that I don’t WANT to do all the things, I just don’t have the energy. It helps so much to see other people talk about how chronic illness impacts their life as far as productivity go, because being surrounded by healthy people who have boundless amounts of energy can really get me down on myself for not being able to do more. Thank you for sharing your experience.
I hear you! I’m not sure how long you’ve had to deal with endometriosis but having prolonged periods of time where your energy is constantly horrible makes you really question yourself. I’m thankful that in the three plus years I’ve had my illness, there have been some months of remission or even just days at a time where some of my energy returns and I am reminded that I actually really like DOING things. I am the type of person that naturally gets a high from being able to check all those things off the to-do list and having a productive day, and I truly believe that if my energy levels were consistently good then my productivity would match that. Realizing that has made the aspect of just having a chronic illness be less of a burden on me, because instead of feeling bad about myself inherently I can recognize that as bad feelings relating to the illness (not myself as an individual). It can be such a struggle though. Sometimes you have to tell yourself that you’re doing the best that you can with the parameters you have been given, and to do your best to genuinely believe that. I’m glad that reading my experiences has helped and hope that you remember what you said here (about not being down on yourself for not being able to do more) the next time you feel underwhelmed by what you were able to do in your day. Hugs!