Jodi Blaszyk, PsyD, spinal CSF leak patient and clinical psychologist, discusses the fourth letter in her acronym ADAPT, for support in living with spinal CSF leak. To read the introduction to this series, click here.
The fourth letter in the ADAPT acronym is P, for Plan
Life dramatically changes in the aftermath of a spinal CSF leak. Two common major shifts are physical limitations (due to symptoms and post-treatment restrictions) and psychological adjustment. Let’s visit three areas in which these shifts affect lifestyle, and become perhaps more manageable with a planful approach.
Plan for: Inevitable Downtime
When grappling with the limitations of life with a spinal CSF leak, feelings of being overwhelmed, angry, anxious, sad, and frustrated are common. But when we take notice of our negative feelings, we can work on changing our perspective and focusing on new ways of thinking and reacting (van der Kolk, 2014).
Living with a leak can leave one with many hours of quiet time. For some, perhaps especially for those who internalize and worry, this can lead to “mind wandering,” which is dwelling on the past or worrying about the future. This type of rumination can often tip us toward depression (Killingsworth & Gilbert, 2010). Having to forgo one’s old life and activities can lead to isolation, and even self-medication. While understandable, these feelings and actions, if left unaddressed, can lead to increased health problems, and take us away from the external world and the present, where novelty and pleasurable encounters still await us—albeit perhaps in smaller or carefully planned doses. It is helpful to remind ourselves to stay present-focused and redirect attention to aspects of life that keep us rooted in the “here and now.” This effort can help stave off the kind of mind-wandering that can circle into depressive thoughts.
For example, whether bedbound or not, one can redirect negative thoughts and use grounding techniques to reengage with the present. This can be done through purposeful distraction such as tactile contact with a pet, feeling grass on your bare feet, or even turning to what is cherished whether by thought, visualization, or touch. The point is to refocus on reality and not the negative thoughts, or painful memories.
Plan to: Gently Combat Deconditioning
Living with a spinal CSF leak is as physically challenging as it is mentally challenging. Being upright can be a position of misery that is frankly intolerable for many patients. Lying flat is often necessary, and physical inactivity is required in order to rest, heal, and to sometimes simply survive the day. And yet research suggests that deconditioning (physical deterioration and systemic degradation due to inactivity) is linked with diminished mental health (Chen, et al, 2022, Rimmer, et al. 2012). For some, prolonged avoidance of activity in order to protect a surgical site or blood patch can later lead to weakness, and possibly even new pain. For others, avoidance of activity can turn to actual fear about certain movements (Crombez, et al, 2012).
However, research shows that even brief and minimal movement helps the body and mind (Carty C, et al, 2021), even for those who are chronically ill or disabled. Naturally, with a spinal CSF leak we often limit activities that increase pain or trigger symptoms. Planning for careful, gentle movement is helpful in not only keeping our body engaged and our minds grounded, but also in improving our sense of wellbeing.
One opportunity for planning gentle movement or activity—while also raising awareness and educating others—is the Spinal CSF Leak Foundation’s annual duradash®, which runs this year from June 1 -12. This virtual event encourages participants to aim to 150 minutes of any kind of activity suitable for their current health level over the course of twelve days. Whether that activity is something that takes place upright or something that can be accomplished while lying flat, everything counts towards that 150-minute goal. And whatever activity a person does, everyone is encouraged to “start where they are” and work within their limits to accomplish it.
Plan for: The “New Normal”
Before my spinal CSF leak, I never realized how much my identity was tied into my ability to be physically strong and active. Once on my spinal CSF leak journey, though, I realized I had started dividing my life into “when I was normal” and “when I was not normal.” Granted, life is dramatically different with a spinal CSF leak, whether you are living with one as a chronic condition or recovering from one. And it’s understandable when under stress or experiencing grief to think in a “black and white” manner. However, this division of life experience into “normal” (before the leak) and “not normal” (life with a leak, or life post-leak) alienates us from our current state. Instead, it may be more helpful to think of where we are as a “New Normal.”
This “New Normal” is a form of in-between in which all of the previously valued parts of a person still exist, but shift to accommodate a present-day bodily reality. Naturally, this may look different for each person. One person’s new normal might be gradually getting back into running after a successful surgery. For another, it might mean walking for 10 minutes each day. Still another person’s new normal might be accomplishing daily life while mostly flat. Reframing one’s adjustment as a new normal, rather than something aberrant and “not normal,” offers us a way to accept our life experience as part of a spectrum of wellness that includes the accommodations necessary.
Click here to read about the final letter in our acronym: T, for Thrive.
Citations
van der Kolk, Bessel, (2014). The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. Penguin Books, New York.
Killingsworth, M.A. & Gilbert, D.T. “A Wandering Mind is an Unhappy Mind.” Published 12 November 2010, Science 330, 932 (2010) DOI: 10.1126/science.1192439
Chen, Y., Almirall-Sanchez, A., Mockler, D., Adrion, E., Dominguez-Vivero, C. & Romero-Ortuno, R. “Hospital-Associated Deconditioning: Not Only Physical but Cognitive.” Geriatric Psychiatry, February 2022. https://doi.org/10.1002/gps.5687
Rimmer, James H.; Schiller, William; Chen, Ming-De. “Effects of Disability-Associated Low Energy Expenditure Deconditioning Syndrome,” Exercise and Sport Sciences Reviews: January 2012 – Volume 40 – Issue 1 – p 22-29 doi: 10.1097/JES.0b013e31823b8b82
Crombez G, Eccleston C, Van Damme S, Vlaeyen JW, Karoly P. :Fear-Avoidance Model of Chronic Pain: The Next Generation.” Clin J Pain. 2012 Jul;28(6):475-83. doi: 10.1097/AJP.0b013e3182385392. PMID: 22673479.
Carty, Catherine, Hidde P. van der Ploeg, Stuart J.H. Biddle, Fiona Bull, Juana Willumsen, Lindsay Lee, Kaloyan Kamenov, and Karen Milton. “The First Global Physical Activity and Sedentary Behavior Guidelines for People Living With Disability.” Journal of Physical Activity and Health 18.1 (2021): 86-93. https://doi.org/10.1123/jpah.2020-0629
Further Reading
This content is provided for general informational and educational purposes only and is not intended or implied to be a substitute for professional medical advice, help, diagnosis, or treatment. If you think you have an emergency, please call your doctor or emergency services immediately. To find a mental health provider, you can visit the ADAA Find a Therapist directory. If you are in a mental health crisis, call the National Suicide Prevention Lifeline at 988 or reach out to the Crisis Text Line by texting HOME to 741741 to connect with a crisis counselor.