One reality of living with any chronic condition is that no matter how much you want to change the world and the future for people with your condition, you only have so much energy. There is a temptation to keep pushing through, that your goals are closer than they appear; however, if you push your body past that point, there is always a toll to pay. So, today I want to talk about this frustrating, but very real, part of living with any complex condition – the importance of rest. Alongside my CMTC, I also live with iron deficiency, B12 deficiency, and migraine; it’s unknown if these conditions are symptoms of my CMTC or individual diagnoses. However, the reality is that all four, linked or not, have a habit of sucking the energy out of me, usually at the worst possible time.
So, today I wanted to talk about rest, and not just I-worked-until-I-collapsed rest, which is what most of us get in this community, but honest-to-goodness I took a day off to rest. It’s hard to do in our busy world, especially when you always end up feeling a bit guilty for taking some time off, especially when you can see online that everyone is apparently working 24/7. Still, it is critical to give yourself this time to stop and reset.
The first thing I want to address is the guilt that can come with taking any time off. The reality is that just like laser surgery, medications, or appointments, rest is another fundamental part of taking care of ourselves. I would argue it’s even more important to do when you are working, not just for yourself, but for others, doing advocacy activities that involve sharing large parts of yourself or being vulnerable. These sorts of moments can drain you; they are so rewarding, and I would never give them up, but they do come at a cost. Any member of this community knows how daunting our challenges are, and how exciting these times can be; that is why there should never be any guilt when it comes to taking the time to stay as healthy as we can. We give so much of ourselves to these causes, which stretches us beyond all our daily challenges with our own health.
The other major challenge I face when it comes to stopping for a while is simply feeling like I do not have enough time to actually take a rest. In this busy world of ours, there is always something you could be doing: emails never stop, social media is always on, work is always there, and people always seem to need you. So, actually finding the time is difficult. This is why there are some weeks where the only way to actually get a rest is to schedule a rest. This always feels over the top and unnecessary, but I won’t lie, when that time comes, and there is an hour or two reserved to stop doing anything or just do something relaxing like reading for enjoyment or another hobby, I am so grateful for past-Katie for making the appointment.
Overall, as much as the saying, “only a full cup can fill others,” does kind of drive me nuts, there is some truth to the wisdom. If you are exhausted, you are limited in what help you can provide others. Additionally, your own health starts to suffer, which often leads to a longer break being needed and you missing events you were hoping to take part in. Your body really will stop you if you don’t stop for it, which is always frustrating and demoralizing, so it is important to be kind to yourself, and as patient with yourself as you are with others you are supporting.