I joined the social network for A Chronic Voice because I needed to find people who understand what life is like with chronic illness, people like me. Today I have written a post using the July link-up prompts, to show my experience of living with a chronic pain disorder. Click here to find other blog posts from fellow chronic pain sufferers, or #spoonies as we call ourselves online.
For the past few months, my Chronic Voice blog posts have been decidedly depressing. Following a minor health scare in June, I was prompted to sit back and look at myself. I realized that I had not bothered about my self-care for an awfully long time, even for years before the pandemic. I had purposely kept myself busy with work and social activities, so that I could ignore the problems with my marriage. Now I have decided I need to bother more about myself.
Life is demanding. I have two children under the age of 10, and while my daughters are incredibly resourceful and mature for their age, they still need physical and emotional care and attention. We adopted a rescue dog late last year, who it turns out is also high maintenance. During lockdown I was prompted to enroll on a dog training course, but we had to do the work at home with guidance from the instructor via social media. And then are the demands of my eye care. My chronic disease flares up routinely as the eyelashes insist on growing back in the wrong places, and I have to epilate myself (remove the ingrowing eyelashes with tweezers). It is a painful and frustrating task, and I do it at least once a week.
Once I realized what had dominated my time recently (an absent husband), I decided to change my attitudes. He will not go away. He will not change his behaviour. But I can change my mood. I returned to my reiki meditation practice. I got my children back into school for the last 4 weeks of summer term, and I enrolled in an online super conference where I could meet new practitioners and learn new attitudes towards mental and emotional self-care. As we approach school summer holidays and the prospect of being mostly alone, my daughters and I will do what nourishes us. We will play together, relax together, meet up with family and friends on limited occasions, and find our happy place.
I admit I am getting a little tired of conducting my social life via Zoom! Back in April my friends and I tried to do some family activities, and we tried to keep in touch, but gradually we all lost interest in telecommunications. Our lives are still busy as we struggle to work from home, cope with emergencies and crises, and find a new “normal” in the wake of the pandemic. We all agreed that we will keep in touch via our group messaging app, but we much prefer meeting in person when conditions allow. That said, I am incredibly grateful for the power of telecommunications, because they stopped me from losing the plot during my 3-month isolation. They kept my children in touch with their friends, and I was able to continue working and socializing under limited conditions. I will continue to rely on Zoom during the summer holidays, but I truly hope that our social venues can start to reopen in September.
What am I tolerating? Pain, and lots of it. I tolerate physical pain every day with my sore eyes and ingrowing eyelashes. I tolerate emotional pain resulting from my marriage breakdown. My husband refuses to separate despite working 100+ hours per week through choice. And I have nowhere else to go. I have explored all my options and decided that I am still happy at home with my children, and we can all tolerate this situation for a while longer. We are resilient, and we choose to be happy.
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