After my first chronic illness diagnosis in 2015, it quickly became clear that establishing a routine would be instrumental in restoring some of my quality of life. Many of my doctors offered different suggestions for what should be included in my routine and how it should be included. However, it was difficult creating a routine that worked for me because there wasn't any kind of template of a routine that worked for everyone. It was a lot of trial and error trying to figure out what worked for me. It wasn't until I went to a POTS treatment center in Dallas that I really felt like I was able to create and master a routine that helped me. I spent two weeks working with the practitioners there to figure out what worked and what didn't. After I left I finally felt like I had a routine I could manage and actually follow on a daily basis. Over the years it has definitely evolved and changed as I continue on my chronic illness journey. However, the treatment center gave me the tools I need to be able to listen to my body and adjust my routine accordingly.
A list of some of my self care practices:
Hydrate, Hydrate, Hydrate
Diet (Gluten free, dairy free, low fat, low fiber)
Exercise
Massages
Iv therapy
Scheduled Rest
CBD oil
Supplements
Treating myself
Sleep schedule
Baths
My daily routine looks something like this. I try to get up around the same time everyday between 8 and 9. The first thing I do is drink a glass of water to start hydrating. Then I try to do some light stretching/yoga and take my medications/supplements. My medications and supplements can and do change based on how the meds are working and if they can be taken with certain supplements. Next I figure out what I can realistically accomplish for the day. Some days I feel pretty good and can get a lot of things done. Other days can be rough and I will take it easy to try and gain back some control over my symptoms. At least once during my day I will schedule rest time so that I am making sure I am listening to my body and not over doing it. Throughout the day I will try to eat multiple smaller snacks/meals as opposed to three large meals. All these snacks/meals adhere to my diet which is gluten free, dairy free, low fat and low fiber. My diet helps me manage my symptoms and allows me to feel like eating. At night it can take a while for me to fall asleep because of insomnia. I try to fall asleep around the same time between 9 and 11 so that I can ensure I get at least 9 hours of sleep. It can be hard to turn my brain off so I take CBD and read before bed. This is pretty much the basic template for my daily routine. I also include self-care practices into my routine that I don't usually do on a daily basis. I get Iv therapy pretty consistently to help me stay hydrated and manage symptoms. I usually take epsom salt baths multiple times a week to help with pain and allow myself time for relaxation. Massages have also become a pretty important part of my routine. I get massages once a month to help relieve pain, improve circulation and prevent migraines. The last thing I like to do as self care is treat myself. Allow myself to have and do things that make me happy. I usually treat myself randomly and not as a reward. I don't treat myself as a reward because I don't want to only have treats and things I enjoy on days I can be productive. Treating myself randomly allows me to maintain the mindset of being positive and accepting everyday my accomplishments will be different.
The most important part of my routine is realizing that it is flexible. Living with chronic illness means some parts of my routine might not be possible depending on the day and how I feel. Committing to a routine is important and can be beneficial in management of symptoms, but you can't allow that routine to become the end all be all. Nothing can ever be perfect and chronic illness is basically the epitome of inconsistency so allowing a routine to rule your life will only set you up for failure. Throughout the day I check in with my body and see how am feeling and what I can tolerate. I wake of severely symptomatic then I will probably skip exercising. Wake up nauseous and I probably won't eat as much as I try to on a better day. It's all about compromise and balance. Taking it one step at a time and allowing your body to dictate how your day will go. Fighting against how you are feeling will only create bigger issues in the end. While I have stressed the importance of listening to your body it is also important to not drop the ball on the basics of your routine. The basics of my routine include hydrating, diet, and sleep schedule. These are my basics because there are things that I can always accomplish and are critical to ensure that my body has what it needs just to function. No matter how bad I feel I always make sure I am hydrating, eating and sleeping. If I let these parts of my routine go then I can easily fall into a vicious cycle of symptomatic days. It's never easy when I am feeling terrible to try to eat and drink, but those are things that I have to do in order to eventually get my symptoms back under control.
My advice for creating a realistic routine to manage chronic illness:
Focus on your basics first hydrate, diet and sleep
Work with your doctors to find out what works for you and what doesn't
Ask doctors what supplements you can take with the medications you are on
Try to incorporate a little exercise/movement into your routine
Create a sleep schedule and stick to it
Find alternative therapies like massage or acupuncture that can help relieve symptoms
Don't allow your routine to become the bible of your life (it's more of an outline)
Listen to your body and give yourself grace