Do You Take Rare Disease Rest Days?

As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and the energy required to get things done. When I deplete my energy levels for one day and keep pushing hard to get things done, I end up in an energetic deficit the next day.

I’ve discussed the effects of burnout in the past. The symptoms are not pretty. That’s why it is so important that when living with a rare disease, I listen to my body and take calculated risks when it is necessary to overextend myself.

Most importantly, I don’t overdo it on a regular basis. If I overextend myself regularly, the worst symptoms set in.

The hardest boundaries to set

Setting boundaries around what I will and will not do is important. Setting boundaries with other people is not as hard as setting boundaries with myself. I can’t tell you the number of times I’ve wanted to do something, realized that it would be overextending myself, and had to talk myself out of it. It’s like having a kid inside me who wants to do ALL of the things and a parent who knows better to keep them safe and grounded.

Awareness in the moment

Sometimes, I overextend myself, such as when I have work deadlines, facilitate rare disease support groups, or even just meet my basic needs, like going grocery shopping or cleaning the house. I know I’m overdoing it in the moment, yet I feel like there is no other choice.

Or, the choice of not doing the thing is more expensive than the energy cost that it takes to do the thing. For example, not going grocery shopping because I’m too tired means that I will not have food in the house, which causes stress, anxiety, and malnutrition. These effects are not good for my health, either.

What my rest days look like

For me, living with a chronic rare disease requires setting aside specific time to rest. Rest days are days dedicated to doing exactly that – resting. For me, this looks like:

• Limiting screen time
• Staying in bed and taking frequent naps
• Only doing the bare minimum for survival. This means that I get up in the morning to let my service dog outside, make myself food, take my medication, and then head back to bed. Anything beyond my and my service dog’s basic needs will be avoided for the day.
• No trips outside of the house, except for fulfilling pet needs.
• No caffeinated beverages. Stimulants to stay awake can interfere with the body’s ability to achieve restful sleep. On a rest day, caffeinated beverages are counter-productive. Herbal teas are a great substitute, and I like to think that I am reaping the many health benefits of herbal teas!
• Eating easily accessible and nutritious food. This can look like anything from fruit, to pre-packaged salads, to canned soups and stews.

Do you take rest days to help your rare disease? How often? What do rest days look like for you?