I have never been one for New Year’s resolutions, but after what was arguably one of the hardest years, I decided it was time to try something different in 2019. The stress and turmoil of the past year left me reacting to life, rather than being deliberate about it. My days swirled around chaotically, with me stumbling along, engaging only as things dropped onto my plate. Without a career to anchor my days, I lived a certain lawlessness, barely able to abide by my own values. In short, I spent much of 2018 feeling untethered.
Feeling adrift is common in a chronic illness like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There is little to ground you in a routine due to the shifting sands of symptoms. Over the years, my neurological problems and inflammation have worsened, leaving a thick pea soup-like fog in place of my brain. Rather than roll around like a tumbleweed, I figured it was time to mix things up. My therapist often would ask, “So, Caroline, do you want to keep exploring this or try something new?” Eventually, I learned that trying something new was usually the way to go.
In my darkest holiday depths (this past Christmas was bruising for me), my lovely sister-in-law sent me a link for a free 30-day mindset reset program with Mel Robbins. I figured I had nothing to lose given how trapped I was feeling by illness, stress, and hopelessness.
Mel’s course changed my life in meaningful ways that I can build on. Below I share some of the lessons I learned from her course in hopes that it might help someone else. As a chronically ill person I had to adapt some of the approaches, but found it very easy to distill the messages into something that works for me in my current state.
The audacity to dream (when you have a chronic illness)
Chronic illness places a damper on dreams. It is hard to think about the future when you have an incurable disease and can barely manage getting out of bed to make a simple meal or bathe, let alone do other tasks of daily living. But the same could be said for depression and many other circumstances that keep people feeling small in their own lives. I don’t mean to imply that this is a problem unique to the chronically ill. I have always been one to dream my way into my life, but I had not realized the impact to my spirit of not having a passion to work toward.
My dream is to get well enough to go back to school to earn a physician’s assistant (PA) degree so that I can serve on the other side of the damn disease. Ideally, my position would involve clinical research with patients, which would compliment my PhD in biology. In this dream, I am living a simple life, by the water (Lake Tahoe?), surrounded by the people and things I love (books and good food). Of course there are three cattle dogs – 1 blue, 1 red, and 1 white, all with big pointy ears. I have a deep wisdom that helps keep me centered and authentic. My finances are sustainable. In this place, I have worked through many of the emotional issues that have undermined me for much of my life.
As far as dreams go, this all seems pretty reasonable. It’s not like I am saying I want to run the Boston marathon with ME/CFS (not that I am knocking this if it is your dream!). Even if I don’t get better I can work toward these things if I am deliberate about them. If my illness prevents me from going back to school, I can still be a life-long student and study medicine, if only to entertain myself.
What is your dream?
Prior to starting the course, Mel urged us to think about the larger objectives we have in six of life’s major categories: body, work, money, love life, friendships and self-worth. At first I didn’t think I was worthy of doing something that was clearly designed for healthy people. What business did I have in setting goals for my body, work, money etc. when I was barely making it from day to day?
I see now that was a hugely limiting way of approaching life. I set deliberate, yet flexible, objectives for each of the six categories for the coming year with an eye toward my larger dream. These are not resolutions, but broader goals and specific objectives that I can work toward regardless of where my disease takes me. This has provided me with a compass of sorts for the year ahead.
Visualization – how to do it so it actually works: Habits are hard to change, with some being harder than others. The first one I needed to tackle was my nighttime routine. Like many with ME/CFS, I have horrible insomnia. Most nights I cannot get to sleep before 2:00 or 3:00 am, if I am lucky. I do all of the worst possible things: look at screens, scroll endlessly through my Facebook feed, binge-watch Netflix, and eat potato chips (Lay’s Salt & Vinegar all the way!) and dark chocolate to make up for my calorie deficit each day. I realized I was doing this largely as a distraction away from physical (and emotional) pain that I would inevitability face each night when I turned out my light.
I have always viewed visualization as a bit new agey, but Mel helped me understand that I was missing a key step to make it effective. The idea is to imagine yourself doing the new thing you want to do, but to also think about how you will feel once you get there. For four nights I visualized myself reading a (paper) book in bed and how nice it would feel to be reading fiction, a world I left behind when my cognition worsened. I pictured how good it would feel to be going to the vivid places that can only be found in literature. I pictured myself getting naturally sleepy and turning off the light.
On the fifth night, I got into bed and have not looked back since. I have read three (!) novels in the past month and started working my way through a 400-level immunology text book. I have used this technique repeatedly since then to tweak other parts of my life with success.
(Full disclosure: I also started the ketogenic diet at the same time as I started Mel’s course and this has vastly improved my cognition).
Think this, not that – replacing limiting beliefs: As Mel says, it’s not about fixing yourself, but changing the patterns in your life that no longer serve you. I am all too willing to admit that I have many patterns that no longer serve me and that still need addressing. Yet I also accept myself for who I am, just as I am. The two things can coexist side by side in my humble opinion.
“Think this, not that” is a pithy way of rewiring the default negative thought processes that are so deeply entrenched, often reaching back into childhood. We all have our own deeply-held negative beliefs about ourselves, and this differs for everyone. For me it boils down to me believing at some deep level that I am unlovable, a common refrain among women.
The first step is simply to notice the pattern. This was not a hard one because I have been working on this particular limiting belief for years, and feeling increasingly frustrated for not making much progress, apart from noticing it.
To motivate us, Mel asked, “How has your belief limited you in the past, how is it limiting you now, and how will this belief interfere with your life and dreams going forward if you do not address it?” It took me all of about 30 seconds to answer these questions and realize that I did not want to carry this forward with me.
The next step is to replace the limiting belief with something that is a little closer to the truth. For example, rather than telling myself that I am fundamentally unlovable (this comes in many nuanced flavors), I shifted the narrative by saying, no, actually I am a very thoughtful and caring person and a really good friend. Whenever I get into unlovable territory, I remind myself of what is actually true. I have applied this to many other limiting beliefs, and have been amazed at the subtle ones that I have uncovered this past month, with me largely unaware of them my entire life.
The morning routine: I thought that if I changed my nighttime routine, it would naturally fix my mornings, which amounted to me waking up around 11:00 am or noon feeling like the Tin Man due to the raging inflammation in my body. It would take another two hours of being unable to move in bed. I would wake up, grab my phone, look at the news, then start my scrolling. Eventually I would get up around 1:00 pm, often not eating till 2:00 or 3:00 pm. I figured if I also changed my diet (thus the switch to keto), the inflammation would improve, and with going to bed earlier, I would wake up and be able to get moving sooner. Was I ever wrong.
Snooze button and sleep inertia: Mel spent several days breaking down the morning routine. She talked about the problem with hitting the snooze button and how when we do this we create the problem of sleep inertia. Given that sleep cycles run about 90 minutes to complete, by hitting the snooze button we essentially put ourselves back into a sleep cycle, only to interrupt it repeatedly. This can take hours to recover from and impact productivity. When the alarm goes off the first time, even if we are asleep, our brains are primed to start the day. Put your brain back to sleep with the snooze button, you might as well do it for another hour or two.
This is one area I needed to adapt. Yes, I want to get up earlier, but I also have a disease process stomping through my body that needs to be respected (an alarm is not a part of that!). Some mornings I won’t be able to wake up between 8:00 and 9:00 am. If this is the case, I let myself fall into another sleep cycle or two if I can. But on many days I do wake up naturally and am ready to stay awake. On days when I want to go back to sleep, but have to get up within an hour I don’t let myself. It is hard, but I know it is harder if I hit the snooze button. It seems to be working.
No phone in the bedroom: The next part was leaving my phone out of my bedroom. This didn’t work for me because I use a couple of meditation and heart rate monitoring apps as part of my morning routine right when I wake up. I figured I could be disciplined enough about putting my phone down at a certain time (9:30 pm or earlier) and not picking it up until the appropriate time the following morning. It was surprisingly easy to do and now the thought of scrolling mindlessly through the news and Facebook when I wake up is pretty jarring.
Mel argued, “Why would you ever want to let the world into your brain before you’ve had a chance to spend some time in there on your own before you start your day?” When you think about all of the horrible news each day, it is shocking to think that so many of us start our mornings being bombarded by the outside world. Not a great way to start the day.
The 5 Second Journal: Mel has created a rather simple, quick, and clever diary/calendaring approach that helps frame the day ahead. The 5 Second Journal takes you through a series of questions that are designed to reinforce keeping the day somewhat deliberate and focused. Rather than making the usual to-do list, start by thinking about the one top project that really matters to you. It might be something you desperately need to get done, but more often I am finding that there are larger projects that never receive attention because they seem too daunting to a chronically ill person. Then there is tending to my dream – this is where larger goals can be prioritized.
The idea here is to make a few small steps toward that goal or project, rather than complete it all at once. I get so easily daunted by the bigger tasks in my life and found that I was frittering away time on less important things. A big one for me in 2019 is financial sustainability and independence, one that I have been sweeping under the rug and only interacting with when absolutely necessary.
I changed this narrative and within one month I won a long term disability (LTD) case, applied for retirement disability (a massive undertaking), and am getting on top of my SSDI case. This happened with baby steps every day for one month.
Other areas of the 5 Second Journal include a brief gratitude practice and picking something that will energize me each day (which usually involves an Epsom salt bath, reading a book, or catching up with a dear friend). This helps to put a positive spin on the day and gives me something to look forward to.
I now wake up, take my various heart readings, meditate, then fill out my 5 Second Journal for the day ahead. Then I promptly get out of bed and start my day (which involves getting back in bed after breakfast). Throughout the day I come back to my journal, making sure that the priority items get some attention.
I don’t even think about looking at my phone, the news, or Facebook until I am up, have my day mapped out, and have spent some time in my own head for a while.
(Note: the one part of the 5 Second Journal that needs improvement is the part where you check in with how your are “feeling”. These aren’t feelings per se, but is more a gauge of energy levels and thinking about what might be affecting them. As a chronically ill person I will score low 99% of the days because the vast majority of the time I wake up feeling like death. I am surprised that she conflates emotion with energy level, but I think you can interpret this part however you want.)
The stress response is largely broken in people with ME/CFS and stress must be avoided if possible. One of the most impactful parts of the program was an exercise that had me think about the times of the day when I brace myself with tension, fear, or anxiety.
I had never thought of my life in this way, but within moments huge neon flashing signs were appearing. Two really jumped out at me. The first is when I pick up my son from school. I struggle with driving and being out of the house and need for pick up to go smoothly. I realized I was feeling extreme anxiety over getting a place to park, to the point where I would start getting tachycardia. The other was in anticipation of my husband returning from work, when family strife would invariably worsen due to conflicts around parenting issues.
There were many, many more – some big, some very subtle. To address these pressure points, Mel had us explore where it came from and then suggested that we come up with thoughts to help anchor us. The approach taken depends on the nature of the particular anxiety or tension. In the case of my husband, this clearly warranted me having a conversation with him. For the school pick-up situation, I had to change my relationship with the whole process. I started to focus on how much I would love seeing my son and hearing about his day. I have applied this even to micro-stresses in my life.
Next up is to tackle the extreme anxiety (bordering on panic attacks) I have when driving over the Mount Rose Highway – a nearly 9000-ft pass between Reno and Incline Village that I need to cross to see my ME/CFS specialist. I have developed acrophobia so this is a real challenge for me (and made worse by snow). Mel also spent many sessions focusing on anxiety and tools for precisely these sorts of situations. She also has some especially awesome materials for teens and adolescents.
This, and my meditation practice, have made me far less reactive to stress and able to roll with the punches better.
Assuming good intent
Another really helpful technique to reduce stress and reactivity is to assume good intent in others. I will admit to having a bit of road rage (my 13-yr old son would roll his eyes at this understatement). I would view each minor traffic infraction as a personal attack of sorts, whether the person is driving too slowly in the fast lane, cutting me off, or not giving me room to move over, etc. Instead of seeing all of these people as having bad intent, I realized that probably very few do. Ninety percent of the time when I do a jerk-like thing on the road it is not intended – why would I not afford the benefit of the doubt to others?
So, now when I am having a really hard time with someone on the road I start to make up stories about how they are probably late to work, or that they somehow really needed to park in that handicap spot despite not have a placard displayed. I have applied this technique to several things in my life.
I am also aware that once something happens, it has happened. We can prolong this stress with negative thoughts or just let it go.
This is an even more powerful technique when we apply it to our loved ones. I will admit to sometimes placing a pretty high bar for my husband. If he falls short, it is so rarely out of bad intent, if ever. Put through the lens of good intent, many annoyances and grievances fall to the wayside, preserving precious energy for other things and making for better relationships with the people we love.
Do it anyway
Mel Robbins became quite famous with a book she wrote called the 5 Second Rule. I haven’t read it, but the idea is that when you feel yourself procrastinating, you can simply start counting backward from five – 5-4-3-2-1 – as a way of priming your brain to spring into action. I use this simple instruction every morning after meditation to get on with my day.
Related to 5-4-3-2-1 is the idea of “do it anyway”. I use the saying “do it anyway” for things that have been on my to-do list for a few days, or maybe it is my top project for the day, but maybe one that I am a little less enthused about. When I find myself avoiding or procrastinating I say, “Do it anyway.” Don’t feel like dealing with the disability forms sent to me last week? Do it anyway. Don’t feel like eating a healthy meal? Do it any way. Can’t possibly swallow those pills? Do it anyway.
This is a great technique for tasks that will ultimately bring relief, joy, prosperity or whatever good thing you are trying to invite into your life, but might first take you on a bit of a difficult path to get there.
Going to the gym was the example Mel gave – few people like to do it, but most feel really good after. Not that this example is relevant to people with ME/CFS, but we have our versions of things that are unpleasant to do but are good for us anyway.
Feeling stuck – a harbinger of the need for change
Having a chronic illness results in feeling stuck a lot of the time. Isolation and a loss of independence are often at the heart of these feelings – stuck in relationships, stuck in living situations, stuck financially, stuck in illness. Being in this state can give rise to a profound hopelessness, despair, anxiety, and depression for many. There is little wonder why the suicide rate is so high in this illness.
What if we could change this “stuck” narrative?
Rather than shutting down around feelings of helplessness and despair, feeling stuck is usually a sign that some kind of change is needed (duh). This is where things get difficult for chronically ill people because we often lack the wherewithal and resources to bring about the changes that we would like to see due to the physical, cognitive, and financial limitations associated with a disease like ME/CFS.
Mel’s course helped me to see that even though I am sick I can still have dreams and larger goals to be working on in my life that will help me feel less stuck. Financial independence and sustainability are big goals for me. While I cannot go out and get a job to earn money, I can do all that I can to ensure that my disability applications are as successful as possible.
While I may never be able to return to school to become a physician’s assistant, I can immerse myself in the literature and read text books for the courses that are included in the PA curriculum. Even if I never get better, I can still gain mastery in some of this knowledge and hopefully put it to good use.
While some of my relationships may not be where I would like for them to be, I can work on being the best version of myself – keeping reactivity in check, being honest and open, and staying centered and authentic.
Bit by bit, I am becoming unstuck. I have landed firmly in my life, in this moment, and with all of the promise this offers.
Mel in a nutshell
Visualize+feel: Imagine yourself in the changes you would like to see in your life and think about how you will feel when you get there. Don’t forget the feeling part – it primes you for change.
Think this, not that: Identify limiting beliefs and replace them with more accurate and positive statements that reflect who you are or who you imagine your best self to be.
Morning routine: Ditch the phone from the bedroom at night and don’t let the outside world into your brain until you have had a little time to spend there each morning. Try the 5 Second Journal to chart your day. Consider self-care routines like meditation.
Anchor thoughts: Identify the times of the day or circumstances that cause you stress. Come up with thoughts in advance for these situations to help anchor you and keep you from spinning out in stress and anxiety.
Assume good intent: Do you find that you are reactive around people? Try assuming good intent. It does wonders to diffuse reactivity.
Do it anyway: Do you find that you procrastinate and have trouble getting important things done? Try saying “do it anyway” and just get on and do it.
Turn feeling stuck into a call for change: Rather than viewing all of the negative circumstances in your life as feeling stuck, take small actions each day that align with your dreams and goals.
If you are interested in checking out the #MindsetReset program, all of the videos can be found on Mel Robbins’ YouTube channel.
P.S. While I don’t write it about it here, the other thing I’ve been doing that has really improved my sense of well being this year is Sam Harris’ Waking Up course, which is not free, but if you email him chances are he will let you have it for free if you are strapped for cash. Can’t say enough good about the impact Sam Harris is having on my life, such a lovely man and decent human being.