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.)

Make Life Easier To Get More Done And Lessen Stress

Examples of notecards I use frequently

Everyone I know feels overwhelmed at times.  They forget things, and they accomplish less than they’d like sometimes. I’m comforted when I have an organized life and am not worried that I’m forgetting something. I like to create systems that support me in being organized, simplify my life, and make life easier so that I can exert energy on the good stuff.

To reduce my stress level, frequently I put effort into reducing the number of decisions I need to make and the quantity of things I need to remember. If I don’t have a method for remembering it, I’ll get in a thought loop reminding myself to do it later. After a while, it can be crazy making. It’s wasted energy that could be put to better use. 

Streamlining things I do repeatedly makes them easier, less stressful, and more likely to get done. Making decisions takes energy. The more decisions I make in a day, the more energy it takes to get through the day. Decision fatigue is real, and when MS fatigue already affects a person’s health it can really lower their quality of life. Given I want to be productive and maximize what I can accomplish, reducing the number of decisions I need to consider and decide repeatedly frees up energy and time for other things.

Simple ways I reduce the number of decisions daily life requires and ways I make decisions when I’m not in a time crunch are as follows:

1. Lay out my clothes the night before so that I don’t need to figure it out in the morning when I have a time limit for getting ready. I include my underwear and socks so everything is ready for me to get dressed and there are NO decisions to be made. My shoes and coat are ready by the front door, and so are my keys.
2. Create a packing list for things I do or places I go repeatedly. I refer to lists frequently before I go on a bike ride, take a long walk or hike, or go to the pool. 
3. When making meals, make extra.  Leftovers are easily one of the most time saving and decision reducing methods for reducing stress.  Think about how often you ask yourself what to make for dinner or your next meal. 
4. Automate bill payment when possible. For things like electrical or phone bills, set up bill pay so that they automatically get paid with a credit card.  I can pay multiple bills in one sitting when I pay my credit card bill. 

Lots of times it’s not about being unable to do something I want done, it’s about not remembering to do it. It’s easy to forget things if I’m out and about or distracted once I get home.  Creating memory triggers helps. Check out these easy ways to stay focused in no particular order: 

1. Make reusable flashcards.  I use 3”x5”cards for recurring tasks or habits I want to create. When I remember I need to do something and can’t do it immediately, I’ll pull that card out or make a new one. I’ll place it somewhere I look frequently. For me it’s the kitchen counter or dining table. It’s a time saver and memory jogger. These reminders are especially great when you share your home. Family members will realize that laundry needs to be done and may help without you asking. They’ll also appreciate that you’re doing things that contribute to the home when otherwise they may not have noticed.
2. Set a timer:  When cooking or doing things where I may not hear the buzzer, I’ll set a kitchen timer or phone alarm. This is great for things like laundry, cooking that requires pre-heating, or pulling something off the stove.  It’s not a failure to need to use these tools. I know people with perfect cognition that get distracted and nearly burn the house down by putting something on the stove and forgetting. The timer is a necessity for reminding me I turned on the oven or put a load of laundry in the wash. I don’t necessarily need to have a reminder card for that (even though it doesn’t hurt), but there are instances when the timer goes off and it takes me a moment to remember what it’s for.
3. Leave myself a note: When needing to do something at home, I’ll put a note in a hot spot I see frequently. At home it may be next to the kitchen sink, on the dining table or in the bathroom. At work it's a post-it on my computer monitor. Sometimes I'll even leave a post-it on my car steering wheel. 
4. Put appointments and reminders on the calendar in my phone with an alert.
5. Create lists for what I need to bring for things I do repeatedly. I have lists for going for a walk, bike ride, leaving town, getting back from out of town. I also have a pretty standard list of grocery items that I frequently eat. The point is to ease up on the number of times I need to figure out the same thing.

Often the difference between feeling overwhelmed and feeling like things are doable is one task or obligation.  If you’re stressed out and having a hard time getting things done, be brutal.  Remove things that don’t absolutely need to be done the way you’re used to doing them or would prefer to have them done.  What’s the minimum necessary to get it done, and when is the deadline? What can be delayed until tomorrow, next week, or next month? What doesn’t need to be done by you or at all?

Get over the feeling that it’s embarrassing or not okay that you need reminders. I once had a family member laugh at me because she saw my reminder on the counter to “Pack” for a trip.  She thought it was absurd that I was reminding myself to do something that was obvious.  Yes, it was needed and obvious, but my simple reminder kept me focused and less stressed.

I’ve learned that a single tracking or organization tool isn’t going to work for everything I want to remember or do. Just like Facebook, Instagram, Pinterest, email and texting have different strengths and times where they’re appropriate, organization is a compilation of lots of little methods.  Think about what works and why it works for you.  Then build on that.  Where do you need to remember things and where do you frequently look? Make a system that works for you.  It’ll be unique to you, your life, and your priorities.  

Triathlon Lessons and Exercise Limits with MS

My sister and me feeling relief and pride
after finishing our first sprint triathlon

I’m trying to find tips on training with MS.  My first instinct is to Google triathlon training with MS. So far I’ve found people that do triathlons, but they don’t really share the nitty-gritty mechanics of how much to train and when to back off. I’m inspired by their stories, but I’m having a hard time converting their experiences to guidelines for myself. I want to know if overexertion can hurt me by contributing to an exacerbation. 

Historically people with MS were advised not to exercise hard. Now the experts suggest it’s fine to exercise hard, but pay attention to your body and don’t overdo it.  I’m trying to find that sweet spot of training and performance where I improve but don’t have adverse consequences. “Don’t overdo it” is vague and hard to apply to my life.  

For me, my obvious MS symptoms include numbness and fatigue. When I push it harder, I can experience foot drop and increased numbness that encompasses my entire body from the neck down with aching in my arms and hands. 

In hindsight I can see pushing myself in the past led to injury, never-ending fatigue and exacerbations. I injured myself at gymnastics when undiagnosed foot drop lead me to land with my big toe under my foot more than once after doing front handspring step-outs. It took eight weeks for the tendon in my foot to heal and prevented me from being able to do a lot of activities.

I found the NMSS has a very helpful brochure “Exercise as Part of Everyday Life.” It provides a lot of good suggestions, and one that I find especially useful is to rest following exercise. They say, “Fatigue that lingers after one hour of rest is a sign of having overextended.”

I’ve taken to setting my timer on my phone to see how long symptoms last after a workout. I set the timer for 30 minutes so that I can remember to check in with my body and see if the symptoms are still there. If they haven’t dissipated, I set the timer for another 30 minutes. Usually my symptoms are gone within an hour. 

I recently competed in a sprint triathlon in Golden, Colorado where it was hot and the elevation was 7,800 feet. Given it was my first triathlon and I live and train at sea level, it was tough! By the time I started the 5k my body went numb (as usual) and my arms and hands also went numb (unusual during exercise). My symptoms lasted 2.5 hours after I finished the event. 

Tonight after jogging 4.5 miles my numbness lasted 2.5 hours, but I think it’s because I’ve been fatigued and having more stress this month than usual. I probably pushed it more than I should, but it’ll be good to see what my fatigue level is tomorrow. 

My research is motivating me to train for an Olympic Triathlon which is about twice the distance of the Sprint Triathlon I did last month. I’ll track my fatigue level and the time it takes for MS symptoms to subside after exercise. I’ll see if I’m able to increase my performance while keeping symptoms from exercise limited to an hour. I think reassuring myself that I’m not doing damage to my health by exercising hard will be a huge part of succeeding with this. I also know that monitoring how I’m feeling and being honest with myself about how I’m doing will be key to staying healthy and pushing my boundaries. 

The challenge will be finding the balance between recognizing and respecting my body when it’s saying “enough” and not fearing symptoms as indicating disease progression. I think I can do it!

Making Relationships a Priority When I’m Tired and Everything is Important

Taking a break to watch the salmon swimming
while on a bike ride with friends

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.  

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated. 

Rethinking beliefs: 

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritizing Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

• Text
• Write an email
• Write a letter or send a card
• Call them on the phone
• Skype
• Meet for coffee or lunch
• Go to a movie together
• Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
• Go to an event: Attend a concert, museum, or dance
• Plan an adventure 
• Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

Levels of MS Fatigue and How I Cope with Them

I never knew fatigue until I experienced it. Once I did, I realized how different it is from being tired.

I put a lot of effort into noticing when I start to feel fatigued so that I can do something before it gets out of hand. My goal is to manage it, prevent consequences to my daily activities, and preclude exacerbations.  I know fatigue may be experienced differently by other people, so I can only describe my experience as I’ve had so far. This description is non-scientific and for illustrative purposes only.

Level 0: No Fatigue at all.  This is especially exciting to notice after I’ve been fatigued. Realizing fatigue is gone is a glorious feeling. I might feel tired, but it is not fatigue.  Exercise and daily activities may make muscles sore or make me want to sleep, but the effort it takes to move is inconsequential. I will wake after sleeping through the night full of energy.

Level 1: There’s the mild level of fatigue where I don’t really notice it until I stop moving. Movements take more energy than they should. Exercising moderately, budgeting energy, and rest helps me recharge.

Level 2:  It’s a full body exhaustion that I can push through.  I know I’ll pay for it if I ignore it, so I take the evening off from household tasks. Take a B-12 shot or B supplements. Exercise moderately.  It’s counterintuitive, but exercise helps with fatigue.  I’ve found that an easy workout clears my head, helps me sleep, and leads to less fatigue later.  This is only true if my fatigue level when working out is less than Level 3. A good rule of thumb is that if after 5-10 minutes of exercise I still feel fatigued, I’ll stop. Some exercise is better than none.

Level 3: There’s the fatigue during the day when I push through a lesser level fatigue and suddenly realize I need to lie down immediately.  I can push through this, but there will definitely be consequences.  A price I’ve paid in the past is not being able to get out of bed the next day.  At this point only low level exercise like a mellow walk or yoga practice will help. Any rigorous exercise will increase my fatigue, and I may take longer to resume normal daily life.

Level 4: There’s the morning fatigue where I will myself to take a shower and need to be horizontal afterward in order to recuperate from the taxing effort it took to shower. When I feel this way, I’ve learned that taking the day off is necessary to allow me to resume my regular schedule the next day. Every movement feels like I’m trying to run through water up to my neck.

Level 5: This level of fatigue is where I can’t get out of bed. No amount of will can override this fatigue. It may take more than one day to recover from this, and it may be indicative of an exacerbation. I try to avoid this at all costs, and I will do what is necessary to recover because there really is no choice. The body overrides any will I may have. This extreme level of fatigue demands that I stay home, nap, limit energy exertion and practice pausing from life for the day.  See my post on Learning to Pause for more on this. 

Paying attention to the signals my body sends me and discerning between when I can continue or when I need to stop has been an art to learn. It requires constant adaptation and subjective assessment. I’ve been very fortunate that respecting my body’s signals and adapting my behavior has been successful for me so far.

Learning To Pause Helps Me Cope With MS Symptoms

In an effort to live a full, productive and enjoyable life, I’m finding that I need to learn to read my body’s signals and rest.  Resting is an activity I’m learning.  You’d think it would be easy.  Just stop what you’re doing and watch TV, sleep or whatever.  If only it were that simple.

I was moving slow this week with low, low energy.  For the past few days everything has been taking an inordinate amount of effort.  Just showering, grooming, dressing and eating breakfast today were cause to lie down for an hour to recharge.   I thought I would go to work a couple hours later than usual in order to budget my energy.  I took a short walk – just two blocks! – to get a latte, and while waiting I realized my body was tingly numb from the waist down.  Okay, I get the message.  I need more than a couple hours extra rest this time. 

I called my boss, told him I’d be taking the day off and explained my Pause Approach.  My intent is to take breaks in my schedule intermittently with the hope that I won’t reach a point of having a full exacerbation leading to a week or more off from work.  Oh, and possibly temporary or permanent damage to my health and mobility.  Funny how my focus is on work first!  Perhaps that’s why I struggle with learning to pause…

I’m learning the importance of sharing my experience with people that care about me or rely on me.  I know sharing a health diagnosis with employers isn’t always the right path for everyone.  For me though, it’s been an opportunity for support.  My coworkers and bosses have been highly supportive of my efforts to attend to my health.  Whether it’s because they care about me or just want me back at work at 100% quickly really doesn’t matter to me.  I do suspect it’s the former though.

My friends and work colleagues express worry when I don’t go to work.  They’ve said they know I must not be doing well if I miss work.  I’ve found their worry adds a layer of stress for me.  I feel pressure to assure them I’m okay and to get better soon so they’ll stop worrying about me.  So I’m proposing to them that I will proactively let them know whether I’m just doing what’s best for my health as normal maintenance or whether I’m experiencing something new and noteworthy.

Today’s efforts to practice and maximize Pause Approach effectiveness led me to create the following guidelines for myself:

1. Look into yourself.  What do you need most right now?  The answer will be different from moment to moment.  Check in frequently.
2. Rally the troops on standby.  Let people know who care that you’re managing your health and this is a normal part of your life.  Promise to let them know if there becomes cause for worry or a need for assistance.
3. Reduce input.  Focus on one thing at a time.  Limit technology as it can make your eyes tired and tax your brain. 
4. Wear comfortable clothes, but still get dressed and groomed if possible.  You’re not sick; you’re maintaining your health!
5. Move your body.  Stretch, do a single yoga sun salutation if possible.  A slow sun salutation can stretch most muscles in the body, raise your heart rate and lift your spirit.  It takes energy, but the physical and emotional reward is tremendous.  If you don’t feel up to much movement, just move from the bed to the sofa or a chair.  Any movement helps!
6. Don’t move your body.  Lay down.  Close your eyes.  Meditate.  Make yourself so comfortable that there is nothing else you’d rather be doing in this moment.
7. Nap only if necessary.  Maintaining a regular sleep cycle is important, and napping can disrupt nighttime sleep for days to come. 
8. Open the drapes or blinds.  Let in the daylight.  Rest somewhere other than bed if possible.
9. Stick to regular routines for meals and snacking if possible. 
10. Do something productive.  Journal, learn something new, research a topic, declutter, organize, write a thank you note, or make a healthy dish.  Limit it to the level of your energy, and don’t push too hard.  Intersperse these activities with doing absolutely nothing.
11. Be responsible and responsive.  Know your work and social commitments so you may cancel or postpone them proactively.  Or go in to work for an hour or so and do the absolute minimum that can’t be postponed or canceled.  Leaving colleagues and friends scrambling to cover for your commitments will understandably cause frustration and resentment on their part, guilt on yours, and more tension in your life.
12. Seize opportunities to pause.  An unscheduled hour or two during your work day may be ideal for taking some personal time off from work.  This may help reduce the instances of needing to take a full day off from work and the impact to your colleagues.
13. Congratulate yourself for having the strength and good sense to listen to your body’s signals and adapt your schedule to accommodate them!