A friend of mine who has a chronic illness and I have recently begun to meet every two weeks to discuss our experiences with our new diagnoses. Each time, we choose a topic to focus on for our meeting. During our first meeting, two weeks ago, we discussed managing daily tasks (chores, school work, jobs) with limited energy and/or during flare ups. During this upcoming meeting, we will discuss creating and sustaining a support system. While this topic is broad, we plan to discuss how to talk about our chronic illness with friends and families, how to set limits and boundaries, how to maintain friendships, and how to build support with professionals and support organizations. As I begun to prepare for our our topic, I began to think about how the most crucial step, the foundation of all of our topics, in fact, is honesty with myself. How can I clearly communicate with anyone what my needs are or be proactive in building my support system if I myself am not clear with myself where I am at.
For me, I have felt more fragile lately. It doesn't take much these days for me to feel hurt, sad, or overwhelmed, or thrown off balance. I have also been feeling very irritable. Whereas normally I pride myself on being available and being an empathetic listener, lately my ability to be available is very limited. I feel profoundly depleted. At the same time, these states wax and wane--always present to a degree, but sometimes much more intense than others. What has been challenging is staying in touch with how I am feeling and communicating it when it is so in flux.
In addition, I have noticed how much pressure I feel from myself right now. After all, I am not actually ill, I tell myself, so quit whining! It's hard to come to terms both with my illness and with my feelings because they are both invisible, so I find myself questioning their legitimacy and I struggle with how to assess and address my needs.
I found a great quiz "The Coping with Chronic Illness Self-Care Quiz" by Pauline A. Salvucci (find the whole quiz here at: http://www.healingwell.com/library/health/salvucci2.asp). She asks questions such as: Do you follow your doctor's treatment plan? Do you more than accept or deny your illness? Have you made changes to your self-care since your diagnosis? As I answered these questions for myself, I realize that I am still grappling with what my illness means because I am completely unclear how this illness will manifest.
In the meantime, I am not coping as well as I could be. Instead, I am vacillating wildly between scrambling to shore myself up against future possibilities and denial because I am not currently experiencing any symptoms. Perhaps even more importantly, though, is that I feel like I have been left completely to my own devices to come up with a comprehensive treatment plan and to sort through the overwhelming information and claims of "cures". So, I have been casting about wildly, but without a clear vision or understanding of my plan. What I decide on Monday, I completely abandon by Wednesday. I need a clearer way of thinking through and creating a plan for wellness--I need to write down guidelines for myself and make a commitment to it.
Interestingly, and perplexing, I think my brain is short-circuiting partially because nothing I do will "cure" my condition. In the face of the incurable, it has been easy to throw up my hands and think, what's the use of getting enough sleep or eating well, how much can it really do, anyway? Irrational, but true!
This is all still so new; it's only been four months since I have received a definitive diagnosis. This knowledge gives me some patience and compassion and the answers to my quiz give me a place to start coming to better terms with this illness in such a way that addresses comprehensive wellness. And, it begins by writing down a plan.
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