Aiming For A Bittersweet Life: The Liberation of Expecting To Become Disabled

Most health advice and guidance teach us what to do to avoid illness. I spent many years following all the advice and making my health a priority with diet and exercise. Once I was diagnosed with Multiple Sclerosis, my view of wellness expanded beyond just my physique, vitals and medical test results.  It now includes adventure, purpose, giving, gratitude, finances, outlook and relationships as well as physical fitness.

My outlook on my future has evolved to believing disability is inevitable for me if I don’t die young. There’s liberation in knowing disability awaits. While I continue to do things that improve my health, I’m embracing illness and aging. Assuming my body will decline someday has been freeing. I don’t live in fear. It’s like my leash has come off and I’m eager to do everything that requires physical mobility. I want to prioritize experiences and activities that depend on my body’s abilities and do them sooner than later.

I think of it as aiming for a bittersweet life to be positive. Living a positive life includes experiencing grief and anger and frustration. It's finding the beauty in all of those experiences that makes for a positive life. Sometimes when I'm feeling low the best thing to do is to watch a sad movie or listen to a song that breaks my heart because then I know I’m living all of life and not just the pleasant parts.

It’s not a negative perspective. It’s embracing the future as it could be given MS has no cure and the medications available today merely slow disease progression. Thinking positively doesn’t mean only hoping for the best outcome. It means assuming things will fall apart periodically and it’ll be okay. I’ll adapt. I’ll continue to find purpose and experience joy. All lives will end. A bittersweet life satisfies the wonderful and the heart wrenching, and I want to experience it all.

Part of embracing a future with an eroding body and disability is cultivating the skill of living well with loss. Get really good at it. I try not to sidestep it or just get through it but to genuinely embrace loss. My goal is to have had such a satisfying life with fulfilling relationships that there will be grief, but there will also be a sense of satisfaction that I didn’t hold back or miss out.

Positivity is not being happy; it's finding grace in that ugly terrible.  When I feel fear, I analyze it to figure out what it is I'm afraid of. My perspective is not just looking at the bright side of things. It's accepting the hard, challenging, frustrating and miserable as having their own form of beauty. 

Somewhat similar to physical agility where people are able to move and fall so that they don’t injure themselves and can get back up, I aim for emotional agility where I’m able to feel heartbreak and fear without it injuring or paralyzing me. The skill I spend the most time cultivating is experiencing pain, fear and discomfort without lashing out.

Since the day I was diagnosed with MS in 2008, I’ve become liberated and made myself and my goals priorities. Cultivating the skills to live through and embrace loss, find beauty in everything, and aim for the bittersweet has given me a positive perspective that works for me.

Wearing the Pretty Shoes While I Can and Experiencing MS Milestones

I saw a t-shirt once that said, “There will come a day when I cannot do this. Today is not that day.”

It holds true for everyone, but it’s especially poignant when living with a chronic debilitating disease. Disability may be inevitable for me. But it may not.  I can stave off these MS milestones as much as possible, but knowing that I may not be able to do things in the future motivates me to do what I can now.

I hit a frustrating MS milestone this week. I wore the absolutely most beautiful high-heeled shoes I’ve ever owned to a formal event. In hindsight I can see that after three hours of socializing and dancing that my feet cramped, my nerves quit firing correctly, and my MS symptoms took over. Usually the impacts are subtler. This time there was no mistake that MS had caused my ankles to buckle repeatedly. I could tell that my feet weren’t staying put or moving on command any longer. While standing still, one foot started to turn under against my will. I paused, tried to regroup, and took a step.  My right ankle buckled. I took the arm of a friend who supported me. I paused again to regroup and thought I could will my feet to cooperate. I took another step, and my left ankle buckled under me. Again grabbing my friend’s arm, I steadied myself and tried to regain composure. After a moment, I moved forward and both of my feet buckled. Then I realized this was MS. This was my MS, and no amount of will would override my feet not functioning.

Holding my friend’s arm and with her other arm around me, I steadied enough and realized I needed to remove my shoes. My ability to wear them that night was done.  I removed my shoes and walked barefoot to keep up with my friends. It took walking a distance of ten feet or so before I felt my feet would be able to cooperate again. Fortunately, my ankles weren’t giving way anymore. It was another hundred feet before my feet stopped spasming.

Practically speaking I think this tells me that I can wear high heels for walking and standing, but dancing in them may no longer be a good idea for me.

I was slightly embarrassed that people seeing me stumble may think I was drunk. I wasn’t drunk, but it’s a reasonable conclusion given the venue and the party atmosphere. Once I’d moved on to another area of the party, I figured people just assumed my shoes were uncomfortable and I was carrying them because I didn’t want to walk in them anymore.

I realize people may think that it’s not a loss to not be able to wear high heels. It’s true that I can have a wonderful life wearing flats. It’s also true that some people have no interest in wearing unconventional, impractical shoes. But to me there’s a difference between not choosing to wear them and not being able to wear them anymore. Yes, people may judge me as self-sabotaging with this, but I think with all life lessons we do what we can until we can’t anymore.  How we find out we can’t do something anymore varies, and sometimes we require numerous opportunities to learn the lesson before we change our ways.

I will keep wearing the impractical shoes when and where I can. I will also start looking for beautiful lower heeled shoes that still make me feel special. I’m glad I made a conscious effort after I was diagnosed with MS to start wearing shoes that were fancier and less practical. I want to take the opportunity to do things and be who I want for at least portions of my life. I think it’s better to have done it and remember having done it than to regret never trying.

This is bigger for me than the shoes. It’s an indicator of the many things I may lose as I age with MS. I know the risks, and I’m taking the chance even when it triggers symptoms. It’s walking a fine line of doing what’s good for me and doing some things that may be physically difficult but emotionally nurturing. I already feel older than my years given I deal with daily inconveniences that people I know 10-20 years older than I experience. I don’t want to give up things until it’s clear that it’s best for me or the consequences become too great. For me the consequence of triggering a pseudo exacerbation, where symptoms act up but no new disease activity occurs, are acceptable. Reflecting on this experience leads me to believe this was a pseudo exacerbation. I know this because the symptoms were temporary. While my fatigue and stress levels have been elevated for some time, I've been able to keep them manageable with lots of self-care.

Pushing myself to the point of triggering an exacerbation with new lesions is not worth it to me. Knowing when my actions are one or the other is tough to discern, but it gets easier each year.  I pay close attention to my body and how it responds to what I do, eat or think, and I think I’m able to tell the difference now. And throughout this life journey, I’m going to enjoy each step of the way, recognize limits as they emerge, and adjust as I can. But I’m going to make a special effort to do a lot of things now that I may not be able to do someday. So far, today is not that day.

Read Wearing the Pretty Shoes: Part II for more on shoes.

New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure.  At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal.  Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock.  To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My hard copy health tracking information to compile

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate.  In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before!  I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem.  My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

1. Indicators, triggers and causes

2. Preventative measures including lifestyle choices, nutrition and activities

3. Treatments including prescriptions, exercises, and natural remedies

     Pros
     Cons
     When it’s effective
     When it’s not effective
     Why I choose this (or don’t)

4. Experiences with this issue - what’s worked or failed

5. Theories for why my body reacts a certain way - correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

• Tracking calendars of health data and disease modifying drugs
• Notes I’ve taken at health appointments
• Physical therapy treatments and exercises 
• My memory
• Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down.
• Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me.  They’ll know what I've already tried, what works, and what hasn’t worked. I won't need to start from scratch with each new provider. 

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

(Apologies for the formatting. Blogger is a bit tedious and not very accommodating for this.)