Friday, January 29, 2021

My Progress in 2020 and Goals for 2021

It's time for my annual New Year's post, summarizing some of the progress (or lack of!) I made last year and my new objectives and targets for 2021.

As I explained in my Happy (Almost) New Year post last year, I developed my own process for setting lifetime goals and then specific objectives and targets to move me toward those goals each year, then I adjusted that process after I got sick. You can read all the details (with links to more information) in that earlier post. This is a process that anyone can use - the types of goals, objectives, and targets you have will just naturally reflect your own lifestyle and limitations, while helping you take small steps to do the things you want to do, whether that's improving your health or taking better care of yourself or learning a new hobby or staying in touch with family and friends or ... whatever is important to you! For those of us living with chronic illness, it's all about small steps in the right direction, not overwhelming New Year's resolutions.

So, here's my own summary - you can look back at my post My Progress in 2019 and My Goals in 2020 for details on last year's objectives, but I will try to sum those up here, too.

My Progress in 2020

I have 6 Lifetime Goals that represent what I want my life to look like.

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.

Each year, I set (or adjust or keep) objectives and then specific, measurable targets to help me move toward those goals. The process is explained here.

I'll skip the details and just share some of what I achieved (or not) in 2020. 

First, A Word on 2020:

Last year was, of course, an unusual year. For me, though, the pandemic was less of a disruption (mostly normal life for me, staying home a lot) than a sudden and still-unexplained downturn in my health starting in March 2020 that I am still struggling with. If you read my progress summary from 2019, you will see that I was doing quite well physically, managing things I hadn't been able to do in many years, with an almost-elimination of post-exertional crashes (due to a wide range of effective treatments found over the years). With this worsening in 2020, I lost much of that progress (temporarily!) with much-reduced stamina and a return of crashes due to mild exertion and far more bad days than good. At this point today, I'm quite sure a flare-up of my Lyme disease was partly at fault and likely some other sort of infectious trigger, too. I am working with my doctors to better treat my Lyme and to uncover the other infectious culprits.

What I Improved on or Did Well in 2020:

  • Successful Book Launch: My biggest accomplishment of 2020 was publishing my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in early February, on a broad range of e-book platforms and with the print book sold on Amazon. 
  • Successful Child Launch: Both of our sons moved out on their own in the second half of 2020. Our youngest graduated from college, started a new job, and moved into his own apartment locally. Our oldest, the one with severe health problems, is not yet completely independent, but he moved out of state and took a big step forward, which seemed impossible a year before. Both are happy and well-adjusted adults.
  • In 2019, I noted that I spent lots of time with my husband, meeting my goals for date nights, walks*, and traveling together. ha ha - I had no idea what was coming! My husband hasn't been to his office since March 2020, and we have been together 24/7 since then. While there has been some friction here and there, I did surpass my goals for time spent together with him and enjoyed most of it! We also got to spend a lot of time with both of our sons.
  • Updated our will (a biggie we'd procrastinated for years, considering our younger son was still identified as "baby #2" in the old documents).
  • Learned some new things about book publishing and promotion that seemed horribly complex to me at first.
  • Getting outdoors more often (my goal is daily, even if it's just 10 minutes lying on our deck), which was a big lift for my spirits on all those sick days.
  • Daily yoga (brief 15 min session, all done on the floor) to help prevent injuries and ease aches.
  • Helped my 95-year-old father-in-law stay connected (a big challenge last year) with outdoor visits, phone calls, and introducing him to Facetime.
Needs Improvement:
  • Stay connected to my family and friends.
  • Freelance writing (which took a backseat to my book the past two years).
  • Create e-mail lists for my blogs.
  • Stay off social media in the morning and improve productivity (last year was a bit of a black hole!)
  • Decluttering and improving our home.
  • Getting to the bottom of the 2020 worsening and trying new treatments to get back to where I was.
  • Resume travel and camping, as able (we are limited both by the pandemic and also my FIL's needs).
  • Get back to regular walking * and light weights * as my condition improves and my stamina returns (already seeing signs of that with new Lyme treatments).
  • Resting when crashed - a continuing struggle for me, to listen to my body.
  • Have more fun! Another one that pops up every year. I need to take more time off and probably reduce my load.
* 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. 

My Health in 2020
I am a data junkie, and find it very helpful to track several different aspects of my illness. This helps me to see if I am doing better or worse and also helps me to evaluate whether new treatments are helping. So, in 2020, the data clearly shows that downturn I experienced:
  • My average exertion level (on a 1 to 5 scale) was 3.5, down 7% from 2019 (which was my most active year since getting sick in 2002).  This was due entirely to that downturn in my condition in March.
  • Overall, my "how I felt" average was 2.6 (a 1 to 5 scale where 1 is great and 5 is badly crashed). This is again down 7% from the previous year.
  • I was crashed (a 4 or a 5 on my scale) 17% of the time. This was a 12% downturn from the previous year and shows more clearly how much worse I was. In 2019, I was only crashed 5% of the time, my best year ever. 2020 was my worst year since 2009 (before I started many of the treatments that helped me to improve so much). Add to this the fact that I had a lot of days last year when I was a "3" - not severely crashed but super-achy and run-down and quite limited in what I could do.
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 (see photo above) 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. 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.

Objectives and Targets for 2020
With my process, my Lifetime Goals mostly stay the same, but my specific objectives and targets may change from year to year (or even month to month).

Many of my objectives and targets do stay the same from year to year, like date nights with my husband (mostly in the house now!), time with my friends, resting when my symptoms flare, etc. My writing objectives for 2021 are quite thorough (a new approach for me), but I won't bore you with all those details. I did get some new inspiration from the book Make Time, which is not about doing more (not all that helpful when you have limited time and energy) but about focusing on the important things. One thing I started years ago was using colored index cards (see the photo at the top of the post) to list a few priorities for each day, to help me stay focused. It forces me to start the day by evaluating what's important, and I can carry the card around with me during the day.

Here, I will just highlight the objectives and targets for 2020 under my Health goal:

1. Try New Treatments & Investigate Downturn - while trying new treatments is an objective every year, this year I am focused on figuring out what made me so much worse last year and getting back to where I was. I've already taken a big step in that direction by seeing my son's Lyme specialist, starting some new treatments for that, and getting dozens and dozens of tests done to look for other infectious culprits behind the scenes.

2. Improve Stamina and Become More Active - (contingent on #1, above, to improve my condition and thus my exercise tolerance). And, only possible because I first treated exercise intolerance.
  • Walk at least 4 times a week (some of my "walks" currently are just a slow 10 minutes around our cul-de-sac)
  • Increase walk time, as able.
  • Continue yoga floor routine, 10-15 minutes per day.
  • Try 30-minute yoga once a month (as able - I managed it before I got worse last year).
  • Muscle-building, 3x per week, as able (on floor to reduce heart rate) - will have to slowly get back into that routine, as my exercise tolerance improves again.

3. Reduce Stress, Improve Rest, and 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

We are each at very different places 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. Focusing on baby steps in the right direction 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!). Each week, I track how I did versus my objectives and re-adjust for the coming week. And, of course, Listening to My Body is always Objective #1!

Have you set any goals or objectives for yourself for 2021? How was 2020 for you? Please share in the comments below! 

Here's to a happy & healthy 2021 for us all, no matter how you approach it!

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