Saturday, January 19, 2019

My Progress in 2018 and My Goals for 2019

I wrote about my goal-setting process in an article for ProHealth: Setting Goals When You Are Chronically Ill (you can read the full article at the link). There, I explained that I don't set New Year's Resolutions that are unrealistic or soon forgotten. Instead, I have lifetime goals that rarely change, and then I set more specific objectives and targets for each of those goals at the start of every year and track my progress. It's a process that anyone can use - not to make unachievable resolutions  but to set reasonable step-by-step (baby steps!) targets to help you actually get what you want out of life...even in a life of limits, like ours.

You can also look back at my 2015 progress and 2016 goals (those related to health & wellness anyway) and also my update on 2016 progress and 2017 goals.

Lifetime Goals
I set these overall goals for my life many years ago - and then updated them a few years back to better reflect my "new normal" with chronic illness. It's funny how I never even mentioned my health in my original goals - we really do take our health for granted until it fails us!

My Lifetime Goals:

  1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
  2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
  3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
  4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
  5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
  6. To give back, help other people, and be part of a community.
SO THAT, I feel happy and content and can spend my time doing things I love.

2018 Progress
I'm a very data-driven person, so I won't bore you with the details of my progress in 2018, but here is a brief summary of my successes and areas that need further improvement. I'll mainly focus on the things that most of you can relate to, like relationships and health.

How I felt overall remained about the same as 2017 for the first three-quarters of 2018, and my level of exertion was about the same, too - so far, so good. Then, in October, I went into a severe crash that left me mostly couchbound for 3 months, due to a flare-up of my Lyme disease. So, if I include those last 3 months, this year was clearly much worse, but that crash was temporary, and I am now back to my normal baseline. 2016 and 2017 were my best years ever, so I hope to get back to that!

In 2017, I was crashed just 3% of the time (11 days all year!). In 2018, I was doing great up until October and was crashed just 2% of the days! Then, of course, the bottom fell out, so I ended the year with 12% crash days.

How do I know all this? Like I said, I like data! I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This data also helps me to tell whether a new treatment is helping. My annual average for 2016 and 2017 was 2.2, a huge improvement over my early years of illness. In 2018, I was at about 2.3 up until that big crash at the end of the year, so I ended 2018 with an average of 2.5. If you're not as analytical as I am (I suspect few people are!), you can just jot down the numbers and notes at the end of each day and use it to see patterns in push-crash, whether a new treatment is helping or not, and other information to help manage your illness day-to-day.

2018 Successes:
These are the objectives where I came close to or exceeded my targets for this year.

My relationship with my husband & sons (note: our sons are grown and mostly out of the house now):
  • Had date nights 2-3 times a month
  • Took walks or other time spent outdoors with my husband 2-3 times a month
  • 6 overnight trips together
  • Spent time each week with our sons
  • 2 "trips" with our sons (our vacations didn't work out but we did have "staycations" and visit family together
My health:
  • Tried 5 new treatments for my son and I (related to MCAS and Lyme & other tick infections)
  • Walked 4 times a week about 80% of the time *
  • My longest walk was 1 hour and 50 min! *
  • 10-15 minutes of gentle yoga stretches on the floor every morning
  • Meditate 10 min every day
  • Muscle building 4 times a week about 80% of the time, with substantial increases in weights and reps *

* NOTE:  My exercise is NOT Graded Exercise Therapy (GET), and I am ONLY able to exercise because of several treatments for my ME/CFS that have eased the exercise intolerance somewhat, including treating Orthostatic Intolerance and treating immune dysfunction. I still definitely have limits and use a heart rate monitor to help stay within my limits and prevent post-exertional crashes. Other treatments have helped as well - you can read my full summary of treatments that have been most effective for my son and I, allowing us to live active lives again.

Areas That Need Improvement:

Other relationships:
  • I only got together with friends (my goal is once a week) about 80% of the time in 2018, way down from 2017.
  • I didn't stay in touch with my mom, my stepmom, and my father-in-law as much as I'd like to.
  • I didn't stay in touch with distant friends much in 2018 (other than Facebook - thank goodness for that!)
  • I had a target of doing a longer yoga session (I have a 30-min tape that works for me) once per month - I didn't do that even once all year! 
  • I need to do better about putting away my laptop by 7pm because I know it wears me out in the evening (I'm doing OK with that but there's room for improvement).
  • I still need a LOT of improvement on putting away my work and resting when I crash - I only listened to my body about two-thirds of the time.
  • I need more fun! I get caught up in writing, helping in support groups, my blogs, and other work and have trouble just relaxing.

2019 Objectives and Targets
I won't bore you with all my detailed targets for writing, family, home & finances, etc., but here are my health-related Objectives and Targets for 2019. Note that many of my targets from 2018 are just carried over to 2019. In many cases, I am making progress but need to keep working at it - remember, baby steps! I did change a few significant things in my Writing targets for 2019, related to my blogs, my freelance work, and the ME/CFS Effective Treatments book I am working on, to try to ease some of that pressure I feel. My biggest problem is trying to do everything at once!

Health-related objectives & targets: 

1. Try New Treatments (this is an objective every year - I never stop searching for things that will help my son and I to improve our health & our ability to function). We'll continue to work on tick infections in 2019, though our new protocol is working well so far, and I'd like to talk to my doctor about mestinon.

2. Take Care of Myself:

  • Rest when symptoms flare (3 or higher on my scale)
  • Do 2 quiet things just for myself each week (no multi-tasking!)
  • No computer after 7 pm
  • Do 2 fun things each week that are not TV
  • Take one "day off" each month
3. Improve Stamina (again, only possible because I first treated exercise intolerance)
  • I am continuing my goals of 10 min of yoga each morning, walk 4 times a week, and do some muscle work (usually lying on the ground to keep my HR down) 4 times a week - I lost some ground this fall, so I am working my way back to where I was.
  • And yes, I am going to try again at doing a longer yoga session (30 min) once a month.
  • Walk a 5k - yes, really! A friend with ME/CFS inspired me, and I was ready by October - and then that bad crash hit. So, I am going to try again this year.
The targets under Take Care of Myself may seem pretty basic, but I still struggle with taking care of myself, taking time out for fun, resting when I should, and relaxing. In fact, as I've improved, I've naturally wanted to do even more, so these kinds of simple self-care actions are even tougher now. My time and energy are still so limited that I want to be as productive as I can when I am up and feeling I need these reminders to take some time out for myself.

We are each at a very different place in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. This helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed (which is what I used to do!)

Have you set any goals or objectives for yourself for 2019? How was 2018 for you? Please share in the comments below!

No comments: