It has been nearly 3 months since my last article, I had been on a roll. When I looked back to determine why, it was clear to me. Winter set in which means the debilitating, even disabling, season of pain. For many with chronic pain, whether it be from autoimmune disease, arthritis or fibromyalgia, the cold, damp weather with the barometric pressure rising and dropping dramatically like lead are our worst conditions. And unfortunately a factor we have zero control over. The dreaded season of winter. In the Spring, the least volatile season, it is much easier to control flares of pain through anti-inflammatory diet, abstinence from alcohol, and exercise for example. In winter, we are at the mercy of mother nature and sometimes so acutely, the number on the barometer. So the pain sets in. The daily, constant stiffness, the ache, the debilitating fatigue, muscle weakness and brain fog. If you are like me, you spend most days traversing these challenges with no breaks to regroup. At times I cannot remember the last time I felt good. A good day, not without pain, but days when it does not dominate or interfere, entirely. Those days come few and far between. That is my winter.
Without being conscious of it, I recede, I go within, disconnect. It is not purposeful. It is a coping mechanism. When each day, all day, is met with pain management, there is not room to think of much else. Meds, stretch, heat, ice, keep the body in motion, tub soaks, meditation, trigger point injections to maybe, maybe take the edge off. Pain management to get through the morning, then the afternoon, then evening just to get to the next day and start all over again. The pain is ever present and the inability to distract myself from it is completely and entirely maddening. So I find myself in this protective cocoon, mentally and emotionally, because if I truly allow myself to think about how hard it is, how many days it has lasted, how long it has been since I felt “good” (and I use that term loosely), it will surely break me. One day at a time, forget yesterday and do not anticipate tomorrow. Stay in the here and now. Don’t look back because the you will realize how long it has sucked. I envelop myself in this cocoon, its like a zen state, that gets me through the day. Don’t think too much about it, don’t, go, there.
Months have gone by in my cocoon. When I finally get a few days reprieve, I realize how bad it truly was. I wasn’t fully aware at the time because my cocoon keeps me safe and insulated. This is not to be mistaken for depression, although for some I can easily see how it can become so. For me it is self preservation, it's more of a meditative state. My zen cocoon. But in this brief reprieve I become more aware of birthdays I didn’t acknowledge, the attentiveness I haven’t given those in my life, the calls I didn’t make. My partner who takes this ride with me, each and every day, has not received any reciprocation.
My illness is incredibly bizarre that I imagine it baffles and confuses my sons, who are young men now in their 20’s. Last week for instance, they observed me in bed after work for days at a time, with a profound exhaustion and disabling pain. Then my reprieve came, the flare lifted and I was back on my feet. The son who watched me unable to to function the day before is now watching me on a step stool waxing my kitchen cabinets. All I can say is “isn’t this illness crazy?” It must be so confusing to them as it baffles the hell out of me. And in my mind I am thinking, harness the moment, get things done because who knows what tomorrow will bring. In winter, those days are few and far between.
I write this for two reasons. So that those who suffer similarly may relate and realize they are not alone in their struggle. Perhaps they hadn’t found the words to describe what happens to them and may share it with those close to them to help them understand. And I write for those who do not suffer but have close friends or family who do, so that they may begin to understand the disconnect, the withdrawal, the need to self preserve.
Winter sucks and it probably always will. My zen cocoon serves me well, keeps me sane, keeps me moving forward, protects me from the reality of how hard this truly is. It is hard and it downright sucks but Spring will come. I don’t count the days because I stay in the here and now.
Today is a good day. I am grateful for it. And I am ready for tomorrow, no matter what it brings. I have a sign in my office for my students to see, it says “You can do hard things.” They can, and so can I.
You are the most courageous person I know. Your resilience in dealing with this horrible disease is a testament to your strength. Always by your side. 🥰
Your zen cocoon brings balance and mental strength. I love your metaphor here. Retract...rebuild...re-emerge refreshed🌻