9 Ways I Manage the Work of Life With Ehlers-Danlos Syndrome

I have come to think of rehabilitation as my job. Maintaining function for me is a full-time effort. From the moment I wake up in the morning until I go to bed at night, every moment of my day is designed around what my body needs.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I used to snooze my alarm until the last possible second. Often, this meant that I’d hit snooze five or six times, jump out of bed, rush to get ready, and be out the door within 20 minutes. My day was a flurry of dropping T off at school, driving to work for a full day of meetings and time at my desk, driving home, and maybe having time to exercise or go grocery shopping on the way. I often pulled into the gas station with “0 miles to go” displayed on the screen because I had — again — forgotten to make time to stop for gas. Weekends weren’t much better… filled with laundry, shopping, yard chores, and anything else that didn’t get done during the week. I’d fall into bed and lie awake, body screaming in pain and my brain spinning — trying to remember everything I’d forgotten to do and planning for the days ahead, trying to find a comfortable spot then trying not to move if I found one. It was a great night if I got two hours of sleep. Most nights I was lucky to get one solid hour.

In hindsight, it’s really no surprise that I hit that wall. I was working and driving and sitting at a desk for 8+ hours a day, not really taking many breaks and I definitely wasn’t moving or exercising in the ways I had been in my previous job. Physical therapy was keeping me hanging on by a thread, and then they stopped working with my insurance company. That was the final straw.

Right from the start, I was sure that I would be back in the working world soon. After about a year, I accepted that “soon” was really “someday” — and someday has yet to come. I kept on setting my alarm so that I’d be awake when T got up to go to school. Even if I was only awake, lying in bed with the room spinning, I was at least able to say goodbye and tell him that I loved him every morning. I did my best to be down on the couch by the time he got home, even if that was all I managed to do that day.

When a traumatic event or an unexpected illness interrupts life, it can feel like the world as you know it has ended. Life pauses for a moment and it’s sometimes hard to figure out how to get started again. In my world, even at my worst, learned to adapt and manage my expectations with chronic illness. I have learned to be consistent. I have learned where I need to be rigid and where I can be flexible.

Here is my list of the things that have helped me manage my illness. I developed it through trial and error and with the knowledge that the pain of not following the list is far greater than the pain of sticking with it.

1. Set your alarm every day — even if you don’t get up, at least wake up.

This is huge for me. I could so easily have turned my sleep schedule upside down and reverted to my teenage self who preferred to stay up all night and sleep all day. I set a boundary with myself early on that I would not do this. I initially believed that I would be back to work within a few weeks and I knew how difficult it would be to undo. I am not a morning person at all.

2. Get dressed every day, even if it’s just out of pajamas and into yoga pants.

It’s so tempting to never change out of pajamas when you don’t feel well, or you feel overwhelmed, or you’ve sunk into a deep depression. Don’t get me wrong, there were many days when I couldn’t change, but my goal was always to not spend the day in my PJs. Once you get used to those comfy pants, it sure is hard to go back to skirts and dress pants! I was a little naive at first. I really did think that I would be back in the office before I got used to my new casual attire.

3. Plan to complete at least one task every day, even if it takes you all day to do it.

It used to take me all day to bake a cake. I’d start in the morning, getting the bowls out. Then I’d have to rest for a while. When the dizziness abated, I’d head back to the kitchen and get out the utensils. Back to the couch for an undetermined amount of time, then I’d start to get out the ingredients. More rest, then I’d get the pan(s) ready. You get the picture. It literally took a day to get a cake in the oven, and I’d time it to come out when T would be home so that I didn’t have to bend over the oven to take it out. No one wants vertigo to strike when their head is in a 350-degree oven! Even if your task is simply to get out of bed and get dressed, achieving small goals helps keep you going.

4. Do some form of exercise every day. Even if it’s just pacing for 30 seconds, it’s a start!

Remember, I literally started with that 30-second walk. I couldn’t walk a mile, never mind around the block or even around my house. Each step adds up, but not if you don’t start. If all you can do is walk to the bathroom and back, do that as often as you can every day. Soon, you may be able to walk there and back twice each time you try. I will often set a timer that I have to get up to turn off. It helps me move. Once I get started, I can usually keep going.

5. Get outside every day, even if it’s just to get the mail.

Fresh air is so important. We know that time outside every day promotes serotonin release, which improves your mood. Can’t go for a walk? Sit or stand on your front stoop for a few seconds. No front stoop or back deck/yard? Open a window and sit by that for a while. Let yourself feel the sun and breeze on your skin. Even a few seconds a day makes a difference.

6. Listen to your body. It really does tell you everything it needs.

I am still working on this one! I will be a master one day. I spent most of my life denying what I was feeling and learning not to feel. I have a super high pain tolerance and my natural inclination is to work through and push beyond pain. I was the one who ran through shin splints right into stress fractures in both shins! Listening to my body means slowing down and not pushing through. It means allowing myself to rest. It means using my tools — lidocaine patches, TENS unit, Thera-gun, pain medication, Bed of Nails, heating pads, ice packs, braces, wraps, gloves, turning up the heat, etc. It means not toughing it out. It means listening to the pain, but not giving in to it. It. Is. Hard. Listen to your body and give it what it needs.

7. Make space for spirituality. I don’t mean religion, but if that’s your thing, make space for that!

I am a sporadic pray-er, journal-er, and meditate-r. (Church is definitely not my thing. I’ve never found peace in organized religion. If you do, that’s great!) These things are good-for-you habits I have yet to be able to practice with consistency, but I do use them when I need to reconnect with myself or am working through a problem. My regular spiritual practice involves taking time every morning to do some deep breathing and feel gratitude down to my bones while sitting in silence. I also pause several times during the day to tune in and take some deep breaths. I find peace in nature, and make sure to notice and appreciate the beauty (and the friendliness of my neighborhood’s feathered and furry friends) around me when I take my daily walk.

The ocean is a deeply spiritual and magical place for me — a place to release, cleanse, and recharge. While my body hasn’t been up to the long car ride, I have videos and photos from past visits, and I follow a few artists and webcams to “get my fix” regularly. It’s not the same as being there, but it does help me evoke and connect with the deep, peaceful feeling of being there in person. However you prefer to connect with your deeper, inner self, I encourage you to make time each day (even just five minutes can make a huge difference) to do so.

8. Go to bed at (or at least close to) the same time every night, even if you can’t sleep.

As mentioned above, I’m not the best sleeper. But, I do the same routine every night. Meds (including Natural Calm magnesium), brush my teeth, read until my eyes feel heavy, practice gratitude, sleep. Some nights, the reading and gratitude practice get repeated until 4 or 5 a.m. Some nights, I fall asleep right away and wake up a couple of hours later for the rest of the night. Some nights, I mostly just sleep.

9. Keep a schedule — it’s good self-care.

Developing good habits and routines is key to making progress. Our bodies are creatures of habit even if our minds aren’t. That’s why new parents are always encouraged to sleep train their babies (I didn’t!). I have rebelled against schedules and routines my entire life — just ask my mom. It pains me to advocate for keeping a schedule. But it works. It has helped me get back some level of normalcy in my life. After figuring out what works best for my body, and rigidly maintaining that routine for several years, I’ve learned where I can allow myself a little leniency and where I need to maintain strict boundaries.

My life is far from perfect, but I have achieved a level of happiness despite all I have lost. I’m also happy to help others figure out the small things that can make a big difference!