The Work of Life

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.

I used to snooze my alarm until the last possible second... often, this meant that I'd hit snooze 5 or 6 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" (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. 

Whenever 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, I didn't allow chronic illness to stop me completely. I still haven't. I have learned to adapt and manage my expectations. 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 things that have kept me sane. 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.

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 :)  

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.

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.

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. 

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. 

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.  (Remember... 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.

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 5 minutes can make a huge difference) to do so.

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 am. 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. 

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 happiness despite all I have lost. I believe that it's possible for everyone to find happiness despite their circumstances. I'm also happy to help others figure out the small things that can make a big difference!

Story Telling

 

Storytelling is important. We all have a story… we all have many stories.  Some stories absolutely must be told. Some stories are the kind that we want to keep hidden, buried deep down inside. I think those are the stories that most need telling. 

If you believe that we are all connected, as I do, sharing stories is how we learn about others... how we find the common thread that we can hold onto that allows us to find empathy for and understanding of that other person. For much of human existence, verbally passing stories down from generation to generation was the only way of preserving history. While no two people experience the same event in the same way, and I don't know what it's like to live as anything other than a white, heterosexual woman, emotions are universal. When someone says, "I'm angry," we know what anger feels like in our bodies. The same way we know fear or love. We can relate. Telling our stories helps others understand us through the emotions our stories evoke. 

I have been reading Becoming by Michelle Obama and it's really making me think about so many different aspects of myself. If you haven't read it, it's really great. I can identify with her need for a solid home life and her desire to avoid the political arena. 

 I'm finding myself smiling while reading about how the larger-than-life former President is really just a normal, messy, human like the rest of us.  I can identify with his "head in the clouds" modus operandi, having spent much of my life in my own head thinking about all sorts of things. Though I'm more grounded now than I've been at any other point in my life, I still spend a lot of time in the clouds.  

Through reading Obama's story, I realized that this blog is a new type of writing for me. While my head might live in the clouds, my work has always been firmly planted down here on earth. I honed my skills under several excellent writers, one of which drummed the Strunk & White quote (pictured above) so deeply into my head, I hear it in my sleep sometimes. M taught me how to write an A+ report, which led to specificity when crafting legal briefs and arguments. After E took me under his wing, I learned to draft minutes that were short, to the point, and contained just enough detail to capture the essence of a discussion without revealing too much else. From there, I moved on to telling the story of organizations within the confines of the (frustratingly) low word and (horrifyingly low) character counts funders often demand. All of this comes back to Becoming.

Obama's writing is beautifully descriptive and engaging. I found myself thinking, "I wish I could write like this!" Then I thought, "Maybe I can!" I don't know... I've never had the space or given myself permission to try.  In this medium, I can use all of the words I want.  I don't "have" to be concise. I can have fun and tell the stories I want to tell... of course, they all escape me now because I "can" tell them! 

Thank you for joining me on this journey of exploration and for being patient with me as I stumble through learning how to tell my stories in a new way... as I figure out which stories must be told. While you may not understand what it's like to live with EDS (I am SO happy that you don't!), I hope to convey enough emotion that you can relate to my experience in a way that is meaningful for you!

Start Where You Are

My physical therapy team is amazing!  I found them long before my diagnosis when I kept getting injured during exercise. I hobbled into the office for the first time in a boot and on crutches with stress fractures in both shins from running through shin splints. I've cried a lot of tears on their tables! 

Many times we've talked about how my body responds in ways that aren't necessarily expected.  One of the fun aspects of EDS is that our Zebra bodies don't heal in the "typical" patterns practitioners are used to seeing. My healing, or lack thereof, made no sense to any of us for a really long time.

For example, when one gets cut badly enough to require stitches, that person would go to the doctor/ER, get stitched, and return in a certain number of days to have the stitches removed. When a person with EDS cuts themselves badly enough to require stitches, we go to the doctor/ER, get stitched, then have to constantly monitor those stitches because they might not stay tight - our skin is super stretchy (which prevents the wound from healing) - or they might tear right through our thin skin and have to be re-stitched or cauterized or who knows what else! 

Bottom line... my body usually doesn't tolerate the general standard of care. What felt amazing on the PT table, would often leave me in bed for the subsequent three or four days because of the rebound effect, which can trigger a bad vertigo spell. It took me years to work up from one wall push-up with my toes inches away from the wall to a set of three "girly push-ups" (knees bent) as part of my strengthening regime. Literally years. I say that this wasn't always the way, but when I really think about it, I used to push too hard too quickly and end up injured... so maybe it was!

At one point, soon after I had to stop working, I thought I'd found the Holy Grail of recovery protocols for EDS'ers. I bought the book, brought it in for my team to review, and learned very quickly that it is not the best protocol for MY body! Like some types of yoga, which I love, it required long holds and advised that the person not move forward in the protocol until that person can hold each position for three minutes.  Three MINUTES!!  If I hold any yoga pose for longer than 10-15 seconds, it may feel good at the time, but I will pay for it for days or even weeks afterward! I was determined though.  I spent a week trying to hold the first position for the recommended 30 seconds each night... and spent three weeks flat on my back with the world spinning. I put the book away. I came to terms with my disappointment in "the magic cure." I accepted that my body rarely fits into the "standard of care" category. I accepted that I will never run again.

I went back to the drawing board. C and I had a conversation while I was on the physical therapy table and the lightbulb finally clicked. I learned what "start where you are" really means. It literally means that you start. If you can't walk for 10 minutes, or even 5 or 1, you just start.  I set a goal that someday I would walk a 5K again. I started three years ago. I'm not there yet.

At first, I couldn't walk to my next-door neighbors' driveway, about 100 yards away.  So, twice a day, I walked from my back door to the back of my yard and back.  It took me no more than a minute each time.  I was shaky and hyperfocused on not getting dizzy I walked slowly and purposefully, knowing that I could lay down if I needed to and that I would be safe... knowing that the vertigo would eventually ease enough that I could get back to the couch.  There were days when I had to wait long past my "scheduled" walk time because I was too dizzy, but I kept my commitment to myself. I will walk.

At first, I had to be really militant and scheduled about walking (structure and schedules are NOT strengths of mine!). Since I made this commitment to myself three years ago, I've been able to be less rigid, because I've developed the habit and my body almost always feels better after I do it, so now I crave it.  I rarely give myself an entire day off, but I will occasionally allow myself to bypass one of my two daily walks.  I also have found a way to walk inside when the weather is just too miserable (torrential rain or temperatures below 15 or above 85). I have little tricks to add extra steps in case I'm a little below my step target for the day and I set a target that I can reasonably expect to meet.  When I started, it was 500 steps a day... for real!  Now, it's 5,500 steps a day.  I'm hopeful that I'll hit 10,000 steps a day consistently at some point again. I'm doing it slowly though. I'm listening to my body and I work hard to overcome my natural "all or nothing" mentality.

I realized that I walk every day, not because I want to (there are more days than I can count when I absolutely DON'T want to!) or because someone has told me to.  I walk almost every day because the pain of not doing it (I'll end up flat on my back in bed, dizzy 24/7 again) far outweighs the pain of just doing it.  It's not will power. It's not loving exercise. It's because I love me.