I remember reading a post that said "the only thing predictable about Dysautonomia is that it's unpredictable" and I couldn't say it better myself. Making lasting changes is hard enough when you're able-bodied, but when you're chronically ill it can feel impossible. I know the first 2 years after I first developed POTS, my main goal was to survive. I had no other thought running through my mind but "I need to get better." I guess in some way, that's still the main thought going through my mind on most days.
There was one goal I had and implemented strategically back in late 2014 that I could learn a lot from to this day: getting reconditioned. I was bedridden, weak, and the one time I tried to have a shower standing for 30 seconds my muscles were so weak I fell. This wasn't POTS symptoms, this was a result of being deconditioned. I became bedridden in January 2014 and in June my then boyfriend told me about a once-a-week church event that would be starting up in September. I became adamant about going: it would be a great opportunity to reconnect with my church family, it would be awesome to get out of the house, and it would only require me to sit up for 2 hours a week.
I slowly started an "exercise plan" to help me reach this goal. During the first week it required me to sit up for 30 seconds (I timed it on my phone) a day and do ankle and wrist rotations lying down. That's how deconditioned I was. The next week I would sit up 1 minute a day and increased the number of ankle and wrist rotations and so on. I created this "exercise program" by myself, based on my current abilities, with no professional guidance. Not only was I able to sit up once a week starting September, but through this small "exercise program" I made up for myself, I no longer required a wheelchair by the end of the 9- month program at my Church and began Dr. Levine's exercise protocol and my ability to go back to school.
You know what I thought every single day during my program? "I can't do this. This is torture. I am never going to get better. I am never going to be able to sit up."
"It always seems impossible until it's done."
I have to remind myself of this every time I'm in a flare and think I'll never get better. I didn't see any progress during my exercise program, yet, each week I continued to drastically improve. When you're in the midst of the suffering, you can't see anything besides your suffering. You can't see the tiny ways in which your determination is pushing you in the right direction. I am where I am today because of tiny steps in the right direction that seemed to have no real impact when they were being done, but looking back, it's the only reason I've been able to get this far.
These were the goals I came up with in October 2014. At the time I was able to do 15 minutes on the recumbent bike but I was so slow I was barely pedaling and the recumbent bike would sometimes stop the timer because it thought I had got off! Then I would have to go on oxygen after and do biofeedback to recover. But I will talk more about this next week when I talk about my experience getting reconditioned.
I bring this up because it's a perfect example of goal-setting with a chronic illness. Each week I made the tiniest adjustment to increase the intensity of my "exercises", each week I felt like I wasn't getting anywhere, each week I didn't see the progress I was making, and yet..
Here I am. Going to school, sitting up, walking, being able to drive, and going far beyond the goals I had taped up on the wall beside my bed.
Over the years, I still struggle immensely to find motivation in the midst of the brain fog, suffering, and intermittent depression chronic illness can cause, but there are a few crucial things I've learned along the way:
1. Keep one goal that's simple and doable across all situations. A lot of people like to adapt a word of the year and this can be a great way for people with chronic illness to keep their mind focused on one simple goal. If you want to be more self-accepting, you can do so whether you're in a flare, bedridden, or doing better than you usually are. It's a goal that surpasses your situation and can help you feel like you're purposefully working toward something. If you struggle with self-acceptance and find yourself in a flare, thinking about all the things you "should" be doing, you can remind yourself "this is not what self-acceptance is, I'm going to challenge these thoughts."
2. Find the balance between challenging yourself and being too hard on yourself. This applies to any goal with a chronic illness. Sometimes your illness will get in the way of your goal and you'll have to give yourself grace. However, sometimes self-care might require that you push yourself a little harder so you're not procrastinating something that'll increase your stress and use up extra spoons in the future. I still find myself struggling to find a balance between self-acceptance and grace and pushing myself to reach my goals. I know a lot of people with POTS were those type A perfectionists prior to our diagnosis, so it can be really hard to find a balance. I've since realized that self-acceptance is accepting where I am but implementing actions toward my goals means that I love myself enough to not stay where I am.
3. "A goal without a plan is just a wish." If it's something concrete like an exercise plan, write down a weekly program for yourself that requires small advancements each week. A while ago I came across a picture someone on my Facebook newsfeed shared from a Tumblr screenshot. It was directed at those with depression (as the author had depression too) but can be applied to those with chronic illness.
It said something along the lines of: "It took me a while to learn this so I wanted to share this. It took me a long time to go back to school with depression because I knew I wouldn't be able to do my best. Then when I did go back to school, I often didn't come to class because I hadn't done my readings or wasn't able to shower. I wish I learned that you just need to show up and that's the best self-care you can do for yourself. How messed up that my perfectionism thought it would be better to fail, or not go to class at all, than to show up and accept a C."
Unfortunately I haven't been able to find the screenshot since but it summed it up perfectly. My GPA has decreased substantially since going back to school with POTS, and for the first year I showed up to class with my hair often wet (I had yet to learn how to manage my time with a chronic illness) and late to class.
You'll be surprised at how many things you can "just show up" to. Obviously, this isn't always the case, but I was convinced that there was NO WAY I would be able to commit to going to cardiac rehab 2x a week and I only missed one session. One. Before that I wasn't even leaving the house 2x a week and so I convinced myself I wouldn't be able to do it.
4. Create a vision board. There has been a lot of research about how the visual aspect of a vision board, if done effectively, can have greater implications than written down goals alone. I divided my vision board into goals regarding my spiritual life, my physical health, my mental health, my education, and travelling. Some goals are long-term while others are words and pictures that inspire me on a daily basis.
5. Write down everything that is within your control and everything that is outside of your control. Work toward what's inside of your control and it might even help with what's outside of your control. For example: my day-to-day scheduling is sometimes outside of my control, due to chronic illness, but there are times when I'm feeling decent and could study but I choose to watch Netflix instead. Why? Because I want to do what I want when I feel well-enough to. This is fine to a certain extent, but when I'm in a flare and my deadlines are quickly approaching, I realize that watching Netflix ALL day wasn't self-care, it was procrastination and therefore self-sabotaging behaviour.
6. Get one thing done today. Breaking up your goals so you only have 1 thing to worry about makes sure you don't get overwhelmed by your to-do list. This is especially helpful for short-term goals like cleaning.
7. Don't get overwhelmed by thinking about the future. Or the length of your to-do list. I found that I often get too overwhelmed by the task at hand that I avoid it. Apparently this is called "procrastination anxiety." Ever since I found this quote and put it on my vision board, I have made a lot more progress in this area.
Do you have any tips for maintaining and sustaining motivation and creating goals with a chronic illness? Leave a comment below, I'd love to hear from you!