By Stacie Prada
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.
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
- Indicators, triggers and causes
- Preventative measures including lifestyle choices, nutrition and activities
- Treatments including prescriptions, exercises, and natural remedies
– When it’s effective
– When it’s not effective
– Why I choose this (or don’t)
- Experiences with this issue – what’s worked or failed
- 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
- My friends’ memories – often they recall things for me that I’ve forgotten
- 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:
Condition: Vertigo and dizziness with nausea
- Indicators, triggers and causes: crystals in ear out of place
- Preventative measures: none
- Treatments: Epley Maneuver to put crystals in ear back in place
Pros: Non-invasive, I can do it at home, and no side effects. Immediate results.
When it’s effective: When dizziness is caused by ear crystals out of place.
When it’s not effective: If dizziness is caused by something else.
Why I choose this for now: It’s an easy fix.
- Experiences with this issue, what’s worked or failed. I experienced dizziness and nausea for a week before seeing my neurologist. He did the Epley maneuver to me on one side and it didn’t do anything. He did it again on the other side, and immediately my vertigo vanished! He taught me how to do the Epley maneuver at home, and I have used it a couple times over the years since. When I need a refresher, I’ve found a Youtube video to remind me.
- Theories for why my body reacts a certain way, correlations proven and disproven: It’s common.
- Indicators, triggers and causes:
– When numbness intensifies or spreads from the usual areas
– Spring and Fall when the seasons change
– Less daylight in winter
– More obligations than usual after work or on weekends
– Workdays that involve constant personal interaction without breaks
– Relationship stress
– Big events – both happy and sad!
– Long periods of added stress
- Preventative measures: Track fatigue level daily and adjust activities and treatments based on fatigue level.
Pros: It lessens light or moderate fatigue effectively and temporarily, it tastes good, it’s accessible, I don’t need a prescription, fewer side effects than other methods
Cons: It can adversely affect sleep and intestinal health. Dosage can only go up to a certain level before getting jittery and anxious. I felt better physically (except for fatigue) when I went without coffee for a month.
When it’s effective: For minimal to moderate fatigue.
When it’s not effective: When fatigue is extreme.
Why I choose this for now: I like it and it fits within my lifestyle. While I need to work in an office setting, it’s helped me maintain.
Experience: Green tea inflames my throat. Caffeine tablets were harsh on my stomach. I may as well drink coffee and enjoy it.
Pros: It’s helpful
Cons: It’s isolating, it can conflict with life obligations.
When it’s effective: At least some rest daily, but more intensive rest needed when fatigue is heavy or extreme.
- Modafinil (Provigil):
Pros: It’s effective
Cons: It requires a prescription, and my insurance doesn’t cover it. Out of pocket cost was $120 for six pills in 2012. (Could check on this periodically to see if it’s changed.)
When it’s effective: It can help me get through periods of time when I’m not able to limit my obligations to get more rest. It’s a good temporary option if I can get an Rx.
Pros: Moderate exercise helps reduce fatigue. It’s good for weight management. It helps keep me mobile and able to experience lots of activities.
Cons: Hard to always gauge how much exercise is enough and how much is too much. Too much extreme exercise over months can tax my body and lead to more fatigue.
When it’s effective: When I’m not injured or severely fatigued.
- Organization & Prioritization:
Pros: It lessens stress and frees up mental and physical capacity for reducing stress.
Cons: It takes a lot of thought and practice to create organization methods.
When it’s effective: Pretty much always.
- Blue light
Cons: Daily time investment required, and the results aren’t immediate. Hard to gauge if it’s helping or not. It was an expensive investment without any assurance it would help.
When it’s effective: Fall and winter when the days are short where I live.
- Limit activities
Pros: Helps free up time for rest and sleep.
Cons: It can get depressing and make me feel like I’m being punished.
When it’s effective: When I’m still able to do things that satisfy me emotionally.
- Experiences with this issue, what’s worked or failed. I used a blue light in 2010 through 2012. I think it helped, and I should pull it out and try it again this winter. I don’t need it in the summer and I forgot I had it. Exercise, rest, coffee, and good nutrition work for daily maintenance. Modafinil works well when I need to keep going for a week or so beyond what my body would prefer. Rest is required to recover from overdoing it.
- Theories for why my body reacts a certain way, correlations proven and disproven: Fatigue is the #1 symptom common for people with MS. With so much damaged nerve insulation (myelin), it takes more energy to do common tasks than for someone with healthy myelin. My neurologist explained that the energy it takes a healthy person to walk a mile may be an equivalent of a mile and a half or two miles for someone with MS.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/