I joined the social network for A Chronic Voice because I needed to find people who understand what life is like with chronic pain. Today I have written a post using the April 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.
Is life returning to some form of normality? We are still in lockdown and expect to remain so for many weeks or even months to come. I find that life hasn’t really changed too much, now that I have settled back into routine. The only difference for me is that I cannot do the long canal walks I did with my dog every day, and my children are at home all the time. There is no distance, no quiet. I am mindful not to complain about them being under my feet and noisy, but I’m sure you all appreciate the joy of complete peace and quiet.
Which brings me to my next point. I made the most of my free time while the children were at school. I would sit quietly and meditate without interruptions. I could work on my reiki self-healing and distance healing. I could sit quietly, without the chatter of what I call “kid tinnitus.” Now I find myself back in the habit of preschool days, when I would hear echoes of child cries even when they were asleep. I am constantly on alert, waiting for the shout of, “Mum!” I really think we have understated the importance of schools not only as a valuable space for children to learn and socialize, but also to give their parents some time alone for self-care. I have never appreciated school more than I do now that it has been taken away.
Distancing from my friends and family is hard. We walk our dog up to visit the in-laws a couple of times per week, because my mother-in-law has severe depression and is full-time carer to her husband. She is finding lockdown very hard because they cannot leave the house, he refuses to get out of bed most days, and she is lonely. She struggles to use the internet and therefore doesn’t have social media connections. I miss my friends, but at least we can see each other on Zoom and we send messages throughout the day with group conversations. The same with my family. I can speak to my Mum on the phone and she has learned how to video call, but I really miss seeing her and having a hug. I just hope she’s still at home when all this is over…
I have lots of stress factors to consider. My marriage is struggling and has been for many years. My husband has depression just like his mother, only he refuses to acknowledge it. Instead he works all day every day. He leaves home at around 6am and returns around 9pm, even on Saturdays. He spends most of Sunday on his laptop checking the bank balance, redoing our family budget, and using his work laptop for other busy stuff. He might give the children a couple of hours of attention, but I am left to take care of all the basic needs. Then there is the stress of my chronic eye pain. It is always worse if I catch a cold or similar virus, so I am becoming increasingly stressed about contracting Covid-19, especially with my husband being a key worker. I cannot explain this situation to other people because my condition is so rare that most health professionals have never heard of it. I am not considered at risk, nor even able to claim social support, since I don’t have a recognised disability. So now I am stressing because my freelance work has stopped with lockdown and I cannot earn any money while I am home alone with the children full time.
Is it worth celebrating right now? Do we have anything to celebrate? Yes, we do. We celebrate the joy of being alive, and the fact that we have safe, comfortable homes in which to live. This weekend we have celebrated our large garden, where I set up a fun Easter egg hunt for my children. They enjoyed it, and I felt better for that. When lockdown ends, my friends and I will celebrate with a big reunion, and we will be very thankful to have each other. One friend has already lost a parent in the past week. I hope we will have proper cause to celebrate on the other side of this pandemic. Stay safe, and be well, my spoonie friends.
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