How to Take a Shower...When You Have Dysautonomia
For most people, taking a shower is something you take for granted—something you automatically do in the morning, or before going somewhere. It may be refreshing or it might help wake you up in the morning, helping you to get ready to face the rest of the day. For somebody with dysautonomia though, taking a shower is anything but refreshing. It is a major task that is time consuming and requires careful preparation and planning. To give the average person an idea of what a typical day is like for a person with dysautonomia, I decided to try to convey what it is like to do one of the most basic tasks: taking a shower. This is not meant to depress anyone or get sympathy, just to hopefully gain a little bit of understanding.
v There are many steps to taking a shower, but before you undertake any of them, try to plan your shower so that you don’t have to do something else that strenuous like doing laundry or going out somewhere, in the same day. If this is not possible, at least try to plan so that it isn’t in the same part of the day (if you’re going out in the afternoon, shower in the morning or evening).
v Make sure you have eaten recently, but not too recently. If you haven’t eaten, you shouldn’t shower, unless you don’t mind passing out. If you have just eaten, wait at least a half hour. If you don’t, your blood will go to your abdomen to digest your food, and not to your brain where you need it—not a good thing when your circulating blood volume is much lower than other people’s. Also make sure you have taken your meds.
v Drink a glass of water. This will help keep your blood pressure up and keep you from getting dehydrated during the strenuous task you’re about to undertake.
v Lay out the clothes you’re going to wear. You might be too tired after your shower to get them out. Also make sure to lay them out in the order you’re going to put them on. If you don’t, brain fog may later prevent you from easily figuring out what you need to put on first.
v Rest for a few minutes. You may not be too tired at this point, but you will need all the energy you can get for your shower.
v Walk to the bathroom. This is considered a separate step because of all the energy it takes.
v Turn on the water. Make it as cool as you can stand it. If it’s too warm, you greatly increase the risk of passing out before the end of your shower.
v Get in slowly, sit down on your shower stool, and rest for a minute. Standing up in the shower is out of the question. You want to make sure to rest after you get in to conserve energy—you don’t want to overdo it too early in the shower.
v Wash up. This may actually consist of several steps. You may need to wash one part of your body, rest, wash another part, rest, and repeat until you’re clean.
v Make sure you check your heart rate a few times throughout your shower. If it’s too fast you may need to stop and rest, cool down the water, and/or even lay down. Any time your heart races too much you need to wait until it’s down to a more reasonable speed before continuing. If you don’t, you might pass out.
v Wash your hair. Make sure you never have both of your arms above your head at the same time. If you do, you will lower your blood pressure, speed up your heart, and you might pass out. If you start feeling lightheaded or faint, put your arms down and wait until you feel better before finishing washing your hair.
v Rinse your hair. Again, only one arm up at a time.
v If you usually put in conditioner, rest first. Having even one arm above your head for too long without enough rest is a recipe for disaster. If you are really not feeling well by this point, you may need to skip the conditioner this time.
v Put in your conditioner and rinse, following the same steps and rules as for washing your hair.
v Once you are finished, turn the water off. If you are feeling faint, your feet are purple (from the blood pooling), or your heart is racing, you should run cold water on your feet and lower legs first.
v Rest until you are feeling ok to stand up.
v Stand up very slowly, making sure to hold on to something for balance. This is possibly the most precarious part of your shower, where you are the most likely to faint. If you feel faint, sit down and repeat the above step as many times as necessary.
v Get out slowly. Too fast and you might faint or lose your balance and fall. Bathrooms are dangerous places to fall, with lots of sharp edges and corners.
v Check your heart rate. If it’s too fast, lay down on the floor. This will cool you off and should eventually slow down your heart as the blood returns to your brain. If you are feeling really bad, put your feet up. If your heart rate isn’t too fast but you’re not feeling well, you may be able to get away with just sitting down.
v Dry off. As with washing up, this might consist of several steps as you rest periodically.
v Comb or brush your hair. It is best to do this while you’re still in the bathroom so you can limit the number of trips to and from the bathroom. Don’t put your robe or towel on yet, as this could make you get too warm and pass out. Once again, observe the rule of one arm above the head at a time. You may need to sit down while doing this, and look in the mirror when you’re done.
v This is not the time to use things like hair dryers or curling irons. It’s too soon after your shower, and if you try you will probably pass out.
v Rest for a minute, until you’re sure you’re ok to walk back to your room.
v Put your compression stockings on immediately, even if you think you’re too tired. Showers tend to make the blood pooling in your legs especially bad, and the sooner you can remedy this, the better. Compression stockings can be put on while laying down if needed.
v Lay down until your heart rate and blood pressure get back to normal (for you), and until you stop shaking. This may take a few minutes or a half hour or more.
v Sit up slowly, and drink another glass of water. This will help raise your blood pressure and give you a boost.
v Get dressed slowly. Don’t stand up any more than you have to. If it is a particularly bad day, you have probably figured out how to put your pants on without standing up. Rest in between articles of clothing if needed. Brain fog may make aspects of getting dressed difficult, but if you have laid your clothes out in the correct order as instructed above this should minimize the difficulty.
v Congratulations. You have just successfully taken a shower. You will need to rest for at least a half hour before getting up and doing anything else. Things like putting on makeup and styling your hair are not considered to be part of the “taking a shower” process. Considerable rest will be needed before you attempt these tasks, and some days they may not be possible at all.
Dysautonomia is not the same for everyone. Some people may have very little trouble taking a shower, and others may not be able to take a shower by themselves, if at all. This is only a reflection of my experience with dysautonomia, which I believe is a moderate case—not mild, but not the most severe. This is what the average day is like for me. Some days will be much better, and some much worse. If you are reading this and you are newly diagnosed with dysautonomia, don’t be scared—you may have a completely different experience. If you have had dysautonomia for quite a while, you can probably identify with at least some aspects of this list. If you are reading this and you do not have dysautonomia, but know someone who does—or who has any other chronic illness—keep this in mind the next time the person cancels on you for the millionth time, or takes 2 hours to get ready in the morning.
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