Tuesday, July 8, 2014

My Days Are Shorter Than Yours

We are driving across the country for our move, and events like this are some of the times when I hate the limitations of my illness. I have a limited amount of time each day when I can be engaged and functional. Most people can drive for 6-8 hours and then have a night out of sightseeing and dinner. I however reach my breaking point much earlier than that, and just can't keep up a whole day of interaction.

I wish that I could spend all day with everyone and go out and do more interesting things. I want to force myself to do more, but at the same time I know if I overextend myself, I will eventually be unable to function at all.

I don't think most people understand living with a chronic illness, particularly one they can not see. Healthy people, understandably, don't know what it is like or what it means to have limited time and energy throughout the day. Basically, those of us with certain illnesses have a shortened day. While other people have 24 hours, we might have 8, 10, or even less. Can you imagine trying to fit in all you usually do in less than half the time?

What is even worse is that since other people don't understand such limitations, you come off as being selfish, not willing to do what other people want. But for me, going out to dinner or functioning past my limit is like expecting someone with a broken leg to run a 5K. It's not a choice to be unable to do something.
The Norris Family, somewhere at a rest stop in Nebraska.

I try every day to live my life in balance, to not do anything that will take away from my ability to function, but it's a circular issue. If I push myself one day and over do it, then I do not have the ability to do the things I need to stay more balanced and have more functional time during the day. For instance, one evening of going out will mean coming home overly exhausted, anxious, and possibly manic. In order to calm myself down from a state I can no longer control, I might eat a whole bunch of sugar to increase the serotonin in my brain. This leads to either not sleeping at all or not sleeping well, which means the next day I have even less energy and then I have to choose: "Do I use what little energy I have to go exercise, which is essential for balancing my mood?" or "Do I use what little energy I have to get my son fed and ready for school?" At that point it creates an ongoing deficit from which I can't recover unless I take a lot of time off to recuperate, at which point I don't even have the energy for the basic essentials in life. Seriously, tasks that are easy and quick for most people, such as getting out of bed and brushing their teeth, is extremely hard for me at times. Those tasks might take someone else a bit of energy and ten minutes of their day. For me it can take as much energy as running a few miles and an hour of my day.

So for me, decisions to go out and do more and have more fun are not actually decisions about myself only. I have to decide how much I can do so that I keep my illness managed well, which is what allows me to take care of other people. It allows me to get my son to school, feed the dogs, get my work done, be kind, be stable, and contribute to the world around me.

It is hard to be the one who is, essentially, the "party-pooper." I don't think the people I am with are required to change plans because of me, but I know many people feel forced to do so because they feel bad leaving me alone or they want everyone to stay together. However, I like to try and make sure my illness limits other people as little as possible. I usually always like to drive my own car so that if I can not stay out as long as everyone else, then I can go home. I get my own hotel room at retreats and on vacations because I don't want other people to have to limit what they do because of my needs.

Of course, the two people I am always with, my husband and son, are often the ones who are effected the most by my limited ability. Often things we really want to do together as a family, I don't do because even on the best planned days, something can go wrong and I end up having far less functional time than we anticipated. It's hard for them, but I always try and be honest that this is my illness and has nothing to do with them. I also show them how I am always learning how to manage my illness better, so that over time I have more functional time or I learn to estimate better so I can follow through on our plans more often.

I hate being unable to do what most other people can do. I hate it not because of how it makes me feel, but more because of how it makes other people feel. Which I know I am not responsible for, but it still bothers me.

It is very hard to have an illness that few people truly understand, which most people see as unreasonable, fake, or selfish because then you feel ashamed of taking care of  yourself. You feel bad for not being able to go out to dinner or going to an event because other people see it as selfish rather than understanding that it is just not healthy or safe for you to do.

I am fortunate to be traveling with family who understands that I can't function after a certain point. I wish the rest of the world was like that though because I know those of us with such illnesses would have a much easier time remaining stable and able to function to the best of our ability, if we were not shamed into doing more than we can handle.

I encourage other people like me to not take on the shame someone else tries to put onto you, no matter who they are. Stick to the choices that make you healthy and able to do as much as possible, for you. And, find friends and family who don't shame you and spend more time with them.


Rev. Katie

P.S. A great post was written on this topic called "The Spoon Theory," which I think everyone should read.

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