For the first time in eighteen months, I think I am going to be okay. I am making real progress towards regaining energy, decreasing pain, and feeling generally more myself. Yay! Praise God!
I want to provide an outline of the things that I think are helping. If you are someone who is in the midst of a longterm illness and you’re interested in sharing stories, please please please send me an e-mail. I would be so happy to share details with you, and I have some specific suggestions if you are initiating any of these changes. Seriously, e-mail me! You aren’t completely alone.
The things I have been doing differently for three months:
- Nutrition: I eat a high-calorie diet of plant-based, nutrient-dense foods, mostly vegan and gluten-free. Lots of raw vegetables. Mega nutrition, every day. Thanks, Mom!
- Mental Health: I am getting psychological help to cope with all of this. I am working with a psychologist on cognitive restructuring, hoping to break the cycle of pain, fatigue, and depression. I also began taking an anti-depressant, which seems to keep me trying. I didn’t realize I had become depressed, but I am learning that this is a common response to a life-altering injury or illness.
- Gradual Endurance: After the initial phase of bed rest, I began adding short periods where I was upright and walking around, beginning with five minutes a day and adding minutes daily. After a few weeks of this, I started using a recumbent exercise bike in my home. I began by biking just three minutes a day and increased by a minute daily. I have been biking thirty-minutes a day for four weeks now!
- Physical Therapy: I began strength building exercises at home, using the leverage of my body and a rubber exercise band. I am cautiously targeting the muscles around the areas of pain (mostly neck, head, and shoulders), which felt pretty counterintuitive at first, but has really helped over time.
- The key to physical activity has been to increase slowly and find what works (for me, it was the recumbent bike, but for others, it may be something like pool-walking). Also, it has helped to expect that there will be some pain and fatigue along the way, but remember that these sensations are not necessarily signs of further harm. This mentality is still a struggle sometimes, but seeing my overall progress has made a big difference. It also helped me to make a plan and commit to it, so that the days when I feel really bad don’t flatten me into inactivity. And, likewise, on the good days I don’t get over-excited, push too hard, and shock my system. Gentle, gentle, gentle.
Perhaps working all of these angles simultaneously created the catalyst for change. When I was able to see my wellness on a multifaceted spectrum, instead of in the dichotomy of “sick” and “healthy” I saw ways to engage the parts I can control (which I guess is the basis for holistic treatment). That being said, I believe that TIME has been the biggest factor. I have tried most of these concepts in the past with negative results. So the virus had its own timetable, despite every attempt we made to change it. It’s just as the NIH neurologist told me, “Patients with long-term illnesses are moving targets.” In other words, what didn’t work in the past might work now. Change is always happening, sometimes only beneath the surface.
Today, I am continuing on the plan to gradually add activity to my days. I am now able to feel pretty okay for the entire day. I can practice gentle yoga at home and go for long walks with my dog, which are two things I have longed for since last July. I wouldn’t have been able to make these changes without the help of my parents. My mom has been living with me and taking amazing care of me in so many ways for the last two months. Independent living will be something I ease into before too long. Right now, I am trying to focus on one day at a time. When I get anxious about whether or not my progress will continue or how fully I will recover, I breathe deeply and say a prayer of gratitude. I am trying to sit with the uncertainty that underlies everything- reminding myself that health is never a guarantee for anybody- and then just return to the present moment.
I am hopeful that, in time, I can build a life and identity that is not centered on illness. As lost as I feel, I trust that good things will flow from God and that I will slowly find the light again. It’s astonishing that this illness- which felt stuck for eighteen long months- is seriously changing. It gives me great hope for other sorts of transformations, even and especially the ones we “know” are impossible. I still have a long way to go, but I am thrilled to be where I am. In the months to come, I intend to trust the process, celebrate progress, put aside fears… & just go with it.
I’d be honored to hear from you: firstname.lastname@example.org