Self-Care is Self-Love

Hello everyone! It’s been quite some time since I’ve written. My healthcare team drastically changed late in 2022 and those changes required adjustment. I knew that my body was no longer as adaptable as I expect it to be, but this was a clear reminder that any change, even a minute change, can cause dramatic upheaval in my body’s equilibrium and in my life. 

Deep self-reflection became an indulgence rather than a joy. When I am dizzy and in pain, my entire being focuses on holding onto moments of peace and gratitude to carry me through the next wave of vertigo, nausea, and anxiety. Anything deeper requires more effort than I can manage. I had to give myself space and grace to be in the moment and let go of my To Do list.

A year out from my change in physical therapists, I am starting to feel more balanced again. I have glimpses of those really good days I was experiencing last year. The bad days are still very present, but I’m finally able to focus some of my creative energy into self-reflection and writing again. 

I won’t promise regular posts yet… maybe not even ever. Consistency and routine are not natural traits, so making such a promise feels restrictive and goes against my nature. ( I used to thrive in chaos. Thriving looks very different these days!) I will promise that I am committed to this blog and sharing more about my journey with Ehlers Danlos Syndrome.

Everyone with this particular diagnosis experiences it differently and every human has vastly different tolerance levels for pain and other challenges. I choose to share in a more positive way than some – focusing on the way I process the ups and downs, rather than only complaining about the lows. I choose to share my gratitude for this time in my life.

 It’s been a gift to have the time and space to learn about myself, how I got here, and my emotional and spiritual growth through this process. To dig deep into therapy and personal leadership, learning new ways to adapt and overcome, growing new skills, and learning to be kind to myself. To learn the true meaning of self-care and self-love, and to practice them daily. I am adding new tools to my self-care tool box all the time, and I hope that never stops. 

My hope, this holiday season, is that each and every one of you embraces self-care in ways that nurture you. Self-care is self-love. 

“Self-love is the basis for unconditional love towards others and an abundant and fulfilled life in general. Lack of self-love, self-esteem, and self-worth manifests as scarcity in finances, lack of trust in relationships, an unfulfilling career and job, and a sense of missing control of our own life.” ~Laine Kaleja~

Say NO to New Year's Resolutions!

 New Year's Resolutions Themes and Intentions

Do you usually set a New Year’s resolution? If you do, how long do you stick to it?  If you’re like most people, only about 7% of people who make resolutions adhere to them throughout the year. How about choosing a theme and setting an intention for the year! 

What’s the difference?  According to the Oxford dictionary, a resolution is “a definite decision to do or not to do something” while a theme is “the subject or main idea” and an intention is “your aim.”  Basically, a resolution can impart the sense of “I can’t do X” while setting an intention based on a theme offers choices. 

Most people, when they make a resolution, start out with good intentions.  You might say,

"I’m going to lose 50 pounds this year," or "I’m going to quit smoking." Those are lofty and worthwhile goals, but they don’t take the “how” into consideration… the little steps to get from now to a 50 pound lighter you.

How does this translate to wellness? For me, resolutions inspire a battle of wills…

“I want chocolate”;

“I can’t have chocolate”;

I feel grumpy, irritable, and angry;

I deny myself for days, then I say F*@K IT and binge on all the chocolate.  

Now, when I set a theme for the year, these conversations in my head feel completely different. For the last few years, my theme has been To Thine Own Self Be True. To really be true to me, every choice I make and action I take must be for my greatest and highest good. Not to be perfect, but to be the best me that I can be. In keeping with my theme of being true to myself in every hour of every day through the entire year, I wake each morning and set the intention of choosing healthy habits throughout the day. So, when the chocolate craving hits, the conversation in my head might sound like this:   

“Man, I’m hungry! I really want chocolate... right NOW! 
Why do I suddenly want chocolate so badly? Am  I tired?  
Maybe… I’m going to put on a song and have a quick dance party.
Phew!  That was great! I have so much energy now, but I still want chocolate.  
Hmmm… am I just thirsty? I’ll have a glass of water.
That didn’t fix it.  Maybe I really am just hungry. I’ll have an orange or apple and see if that takes care of it.
Nope… I still want chocolate.  I’m going to choose to have one piece of Dove dark chocolate.
Mmmmmm. That was delicious and just what I needed!”

Do you see the difference? Didn’t the second conversation feel completely different?  In thinking through how to best be true to me in that moment of craving, I question the desire for something “unhealthy,” I take steps to determine whether the craving is masking something else, then actively take responsibility for the ultimate choice to have one piece of chocolate to finally quell the craving. I don’t feel angry or grouchy or guilty for making the choice to have a piece of chocolate and that one piece of chocolate really isn’t going to hinder my underlying goal of losing weight.

Here's the intention-setting process I use, with a caveat.  Start small!  I’ve been at this for a while. The process might feel a bit large if you’re new to this kind of work. To create my intention, I:.

 

1. Get clear on what I really want to feel and be - I want to be fully present and aware of my body, thoughts, and emotions in each moment. I want to feel freedom, joy, and love for myself.
2. Let go of all of the “noise” - the past is over!  Every day is a fresh start.
3. Embody (What will it feel like?  Bring in all of your senses and feel what it will be like when you have what you really want.) - When I am fully present and aware of my body, thoughts, and emotions I will feel alive, honest, joyful, connected, and deeply trusting.
4. Set my intention - I trust myself fully in each and every moment.  I love knowing that I have everything I need inside myself and that my body holds all of the answers. I choose to listen.
5. Take Action (Practice!!!) - I choose to pause and ask my body what it needs at least once an hour. This is a simple action that I can take throughout my day to keep awareness focused on my intention.
6. Stay flexible - This is a process.  It takes multiple repetitions to form a habit - especially a positive habit.  We are perfectly imperfect humans.  
7. CELEBRATE! - Celebrate the small steps! I spend a few moments reflecting each night before I fall asleep and congratulate myself for at least one instance when I acted on my intention that day.

How does this land for you? Do you need some help with any part of the process? Do you see the difference between intentions and resolutions? Please share!

A Bad Day Doesn't Equal a Bad Life

In the beginning, life was nothing but bad days. I couldn't remember what a good day felt like. A couple of years in, as I started regaining some control over my body, thanks to all sorts of radical self-care practices and a great care team, I remember having a glimpse of a good day.  I immediately got my hopes up, expecting that one partially good day was the beginning of my return to "normal." The next day, I was devastated when I realized that the good day was an anomaly and that I was right back in the downward cycle. I was so depressed and anxious and sad.

Over time, I began to realize that we all get to choose how we live our lives... I get to choose. I can choose to wake up every day and focus on how much pain I'm in, on how miserable I am, on how dizzy I am, on how much I've lost, on how much life sucks and isn't fair, on how much I've had to give up, or on how much I can't do. (Don't get me wrong... I lived in this place for a long time!)  

~OR~ 

Or...I can choose to wake up and focus on feeling grateful for everything I do have. 

I can choose to remember that vertigo rarely keeps me in bed all day now and that I have medications that help relieve the worst of its effects. I can choose to realize that I walk outside (mostly) every day without needing someone with me, just in case. It doesn't matter that I pace up and down two streets... I'm outside in my neighborhood instead of inside staring at the same four walls. I can choose to feel incredible gratitude for the team of people that surrounds and supports and helps me. From rides; to cooking meals; to shopping, shoveling, plowing, mowing, etc... I have people. I created the support system that surrounds and holds me and I reciprocate however and whenever I'm able. I can choose to work on my emotional and spiritual health and develop healthy, positive routines that support my physical healing.

I choose to figure out how to be a positive force in the world. I choose to get out of bed every day and accomplish one thing. I choose to not let the bad days take over. I choose not to wallow in all that I've lost, had to give up, and had to let go. I choose to live my best life... and to shift my version of "best" to meet myself where I am. I choose!

Every one of us has the capacity to make these choices. We can choose to nurture that little light inside us - that spark that keeps us moving forward. Gratitude is the key. When we feel gratitude - down to our bones - we can live with joy... even (especially!) on the bad days. 

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.

Venting & Complaining

I read a piece about complaining in a daybook the other day, then a friend and I were talking about healthy vs. unhealthy complaining. I know this doesn't seem EDS-related, but it is. I believe that there's a time and place for everything. Sometimes we just need to complain about another person, place, or thing. Sometimes we just want to blame the world for all of the bad things that happen to us. Sometimes we just need a minute... or a day. Sometimes we just need to vent to get whatever is bugging out so that we can move forward.

Appropriate venting - going for a run, chopping wood, screaming while driving, dancing it out, blasting music and singing at the top of your lungs, hitting your bed/pillow, venting to someone who knows that you just want someone to listen while you vent, etc. - is so necessary and productive. (Holding powerful emotions inside is really unhealthy.) However, staying in that complaining place also does no good. Not for the person doing the complaining or for the world in general. I believe that we are all connected and that, what we do for the one, we do for the all. I believe that everything happens FOR us, not TO us.

I have bad days... we all do. I have days when just getting out of bed takes monumental effort; when putting on a bra causes excruciating pain; when I can barely move because the vertigo is so bad. Those days remind me to take better care of myself; to test my limits not roll over them with a steam roller; that there are plenty of things that I CAN do... I maybe just can't do them as long as I want to do them.

I also have good days... days where I get to spend time with friends or go pick apples and grapes and blueberries or go for a really brisk walk. I have those rare days when I forget that every joint in my body hurts and that I have to be careful and that I have to be mindful. Those days - those sparkling, rare, joyful days - are precious.

Regardless of what's going on around me or in me, I also wake up every day feeling blessed and incredibly thankful for my life, for all that I have, and for all of the people I call friends and family. Regardless of what's going on in my body, every day is a great day and I'm happy. Just because I have this thing that is debilitating my physical body, does not mean that I am not a valuable and productive member of society. Just because I can't go to work every day, doesn't mean that I can't find avenues through which to give back to my community in ways that honor where I'm at and my physical capacity, which changes daily.

When this journey began for me, (really from as far back as I can remember, but clearly with the diagnosis that explained SO many things,) when I hit the wall and life shut down for me five years ago, I didn't think that I'd ever feel grateful that my body was flawed. I couldn't accept that my life had changed... that there really would be no going back to the way things were. It took me a long time to grieve my "old life." But, I allowed myself that grief - from the initial denial when I was convinced that I would get better "soon" to the acceptance that "soon" was relative and that my body was in charge now. Through the grief came empowerment. I accepted that what used to be was over. I began to figure out what's next. I still don't have the answer, but I'm excited to stay on the journey. I am grateful I'm still here and on that journey! My life isn't over just because there are so many things I can no longer do.

I believe that life is what we make it. I believe that life is not fair and that it's not meant to be fair. I believe that we can choose to be miserable or we can choose to be grateful and happy even when we feel miserable. We all get to choose... we can choose to stay in a state of constant complaining or we can choose to vent, get over it, and be happy. I choose to be happy! What do you choose?