Happy New Year!

 

Sometimes I forget how challenging it is to live with a chronic illness. It really is a full-time job.

Life in the before time (BT) - the time before I became disabled - was so... different! Life in BT was grand (In hindsight! Of course, there were challenges even then!). I adapted to change nearly flawlessly (I thought!); I could be and was impulsive; I could take off at a moment's notice on weekends when T was with his dad; I could go out dancing with friends as often as I wanted; jogging was freeing; regular road trips were mandatory. BT was filled with love and joy and laughter and fun.

Those things are harder to come by these days, in the now time (NT). The thought of even a short car ride means preparing my pillows, ensuring I have my tappers, timing meds and having extra on hand, and ensuring that the vertigo is in the background. Even the simple things mean planning. I haven't gone away for a weekend in years... I KNOW that I can usually sleep in my bed, with all of its modifications, but other beds are definitely not something I look forward to anymore. Jogging, dancing, road trips - those are fond BT memories. Opportunities to be impulsive and not suffer rebound effects for days or weeks are few and far between. Love, joy, laughter, and fun are still present in the NT, but they do feel different. Leaving my house in the NT, with all of my tools, is reminiscent of the time with T was an infant and it took an hour to pack up all of his gear for a trip to the store!

Most of my daytime hours now are spent just living. It isn’t until I come up against the desire to do a normal activity like washing my hair, which requires no thought or planning for most people, that the fact that I am living with chronic illness really hits home. For me, washing my hair isn’t as simple as jumping in the shower. Washing my hair triggers vertigo no matter how I try – in the shower, sitting, standing, leaning over the sink, short hair, long hair, etc. I’m working with my physical therapist to hone in on the hows and whys, but in the meantime, the vertigo and anxiety cycles cause me to extend the time between hair washings to an unbearable length. Clean hair equals positivity and feeling good in my world. The longer I go between hair washings, the grosser my hair, and I, feel.

For those who have never experienced vertigo, even after a wild night on the town and copious amounts of alcohol, be extremely grateful! It is such an awful feeling. The world spins, nausea hits hard, and you’re fighting to sit still while struggling to not throw up.

I’m not a New Year’s goal-setting person. I’m more of a Theme and Intention person. My theme for 2024 is Light-hearted, Playful Curiosity. One of my intentions is: I live in a vital and healthy body. For me, feeling healthy and vital includes having clean hair. With that in mind, I'm leaving behind frustration, sadness, and fear. I decided to bring the spirit of curiosity into my quest for clean hair. I decided to experiment - to think like a scientist and approach my experimentation methodically while maintaining a mindset of curiosity. My experimentation will be guided by the Scientific Method (Question, Research, Hypothesis, Experiment, Data Analysis, Conclusion, and Communication), not in a rigid way, but in a playful way. I’ll test different dry shampoos, no-rinse shampoos, body positions, tools, etc. I am staying curious, researching, and experimenting as often as I can. Fingers crossed the experimentation will yield the result I want! In the spirit of play, I was watching a Friends episode in which Phoebe sang, The Shower Song. Phoebe always makes me giggle!

What are you releasing and leaving behind from 2023? What are you carrying into 2024? What theme will guide your year? I’d love to know!

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!