Setting Realistic Goals and Expectations With MG

Shawna Barnes avatar

by Shawna Barnes |

Share this article:

Share article via email
health boundaries | Myasthenia Gravis News | banner image for

Many of my friends, colleagues, and family members set goals for the year in January. Goals can be personal or professional, interpersonal or financial, realistic or not.

What makes a goal realistic, particularly for someone with myasthenia gravis (MG)? It’s a tough question to answer, but I’ll do my best.

Before I got sick, I was one of those people who saw every Jan. 1 as a new beginning. I could mentally reset the clock and plan to make the new year the best one yet.

I’d spend days filling a vision board with my goals and dreams. Then, I’d break down specific, actionable steps I could take to make those goals and dreams a reality.

Recommended Reading
thymus | Myasthenia Gravis News | illustration of clinician looking at data

PRO Tool May Better Address MG Symptoms Most Affecting Patients

My health intervenes

After I had to medically retire from the Army in 2011, I spent seven years focused on working with the doctors at my local Veteran Affairs (VA) facility to figure out what was wrong with my health. Unlike my previous goals, this objective had no official start or end date, timeline, or deadline. I simply worked at it a little bit every day.

In 2016, I started following business consultant and growth coach Lisa Robbin Young’s example of setting “DUMB” (doable, understandable, meaningful, believable) goals, which she describes in her book “Creative Freedom.” Young’s system helped me to set better goals related to obtaining a diagnosis, and to partake in hobbies that made me feel better during this weird limbo period.

I finally achieved my goal and was diagnosed with MG in July 2018. After starting treatment, my symptom progression seemed to plateau, and I felt better than I had in years.

A change in perspective

Fast-forward to 2020, when my husband became a personal trainer, and I got to hear a different perspective on goal setting. Over the next 18 months, I learned about realistic goals, unrealistic expectations, and how to find a compromise between the two. This lesson was drilled into my head quietly, subliminally, without my husband or I realizing it was happening.

My husband helped me get out of my own way. Listening to him explain how he was helping his clients set and achieve realistic goals showed me I had very unrealistic expectations about what my body could and couldn’t do.

This lesson ultimately proved helpful when my symptoms began to break through the treatment in July 2021. My health tanked, but I was still trying to live like I was “fine.”

I wasn’t. I ended up having my first myasthenic crisis, and was in the specialty care unit at my local VA for a week in respiratory failure.

Setting my expectations for 2022

After last year, I know I must accept that I’m not “fine.” As I look ahead to 2022, I’m determining which expectations are realistic, which will allow me to set achievable goals.

Unrealistic expectation:

  • I can do the same things I’ve always done, in the same way I’ve always done them.

Realistic expectations:

  • I can do many of the same activities that I used to do, just altered or in moderation.
  • I will require rest or break periods between activities.
  • My abilities will change as my care team and I work to find a better treatment plan for me.
  • My baseline will likely be different from my baseline two years ago, when my symptoms were well managed.

If MG has taught me anything, it’s that I can still do many of the things I enjoy, but I have to be patient and kind to myself in the process. I must show myself grace, and accept that I’ll need to perform activities differently.

Because of the disease’s variability, my main goals are to accept the pivot, ride the wave of unpredictability and inconsistency, and accept my limitations. What’s unrealistic today may be completely doable tomorrow. That’s the wonder of MG: No two days are ever alike.

***

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Norm Nisbet avatar

Norm Nisbet

You had a crisis more than three years after the onset of MG. Is that unusual? I thought that after some period of time, we usually don't get worse.

Reply
Shawna Barnes avatar

Shawna Barnes

Hey Norm! Thanks for commenting! We're all different. I definitely have an atypical presentation and have been refractory to standard treatments. I am seronegative and my MG is not well managed right now. I will be discussing more of what MG looks like for me in future posts. - Shawna

Reply
Laura Brochu avatar

Laura Brochu

Thank you, Thank you!! As I lay in bed feeling like I have run a marathon only to have walked a little more than I am use to. These are the days I feel defeated. Asking myself Why? Reading your story has left me more optimistic about tomorrow than earlier today!

I hope that you keep us posted on your journey! It helps people like me to know don't look back only forward!

Thank You!

Reply
Shawna Barnes avatar

Shawna Barnes

Hey Laura! Thanks for commenting! I'm so glad that my story has helped you feel more optimistic! That makes me happy. We all have bad days, the "sloth" days, that can bring us down but reminding ourselves that today doesn't have to drag tomorrow down definitely helps! -Shawna

Reply
Bonnie Cousineau avatar

Bonnie Cousineau

I, too, thought I had MG under control because most days I forgot I had it. No prednisone for three years (thank goodness!), only two CelCept tablets a day, and virtually no symptoms. Then, a few months back, my legs seemed weaker and afternoon fatigue was so severe I slept for hours. My doctor had hoped I could get off CelCept completely, as I had been doing so well, but warned full blown symptoms might return. I have adjusted to a less active day and welcome my naps now. My age (82) might contribute to the weakness and fatigue, but I face the fact that MG has not gone away completely. (I still harbor the hope that my stamina will once again return though.)

Reply
Shawna Barnes avatar

Shawna Barnes

Thank you for sharing your experience, Bonnie. I hope that you continue to have more days than not where you can forget you have MG because you feel that amazing!

Reply
Lovina Wolgamott avatar

Lovina Wolgamott

Your article made a lot of sense for me. I was 62 when I was diagnosed with MG only a year ago. It is hard not being able to do things like I did. My husband and oldest son are always reminding me to pace myself. Continue writing. Stay happy
I try to laugh a whole lot more. Thank you again

Reply
Shawna Barnes avatar

Shawna Barnes

I'm glad to read that my article made sense for you, Lovina. Laughing my way through the absurdity that is life is the only way to get through it for me. My husband also must remind me to pace myself so you are not alone there.

Reply
Lisa Robbin Young avatar

Lisa Robbin Young

Shawna! I'm so glad to see you sharing your journey with others. You've come a long way, seen a lot of ups and downs, and it's a gift to everyone to hear how you've navigated things. I'm honored to have been part of that journey. Thank you for the mention here!

Reply
Shawna Barnes avatar

Shawna Barnes

Thank you Lisa! I use what I've learned from you daily and I appreciate the kind words!

Reply
Randal Neely avatar

Randal Neely

My gMG went five years after being diagnosed. Yes, it progressed from one eyelid to an arm and to both legs. Never predictable. I worked in a county courthouse and was an elected official. One symptom showed while teaching a class of 45 people the job of being an election poll worker. Never had MG affected my speech, but, 35 or 40 minutes into the class, my words began to slur. My right-hand worker stepped right in and took over not commenting on the incident. By the end of the day, I explained what I believed it was but explained many other people have worse conditions than not being able to speak for an hour straight. Some laughter. Some furrowed brows. I went 5 years working around MG. I retired never having a bad exacerbation. Then 7 months after retirement, I was losing energy badly and was to try IVIG treatment. Breathing actually worsened. I used a bipap some nights. Some great days. Some not so great. Got vaccinated for Covid-19 Feb and March of 2021. Downhill roller coaster so to speak. Everything worsened. Breathing worsened dramatically. April 16 2021, ER visit by ambulance. I had collapsed from breathing problem. Could barely move. My cat moved my phone towards me, so I could call ambulance. Honest. I heard in ER that I nearly died from low blood oxygen level from weak breathing. IVIG again. Went for IVIG before getting too bad Jan. 2022. Had covid three days after dismissal. Not doing well now but hoping to try something in addition or instead of just generic mestinon. Everyone is different. Bless you all.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.