Several things to say up front. Many people live with chronic illness. Chronic illnesses include diabetes, heart disease, obesity, cancers and mental illness of all forms – just to name a very few. Some come with chronic pain and some do not – but when you consider all of the various chronic conditions, most people can say they have at least one. It is the impact on an individual which can vary dramatically.
A person with diabetes who can manage it with exercise and diet, who requires no medication or insulin injections, still has diabetes. Their experience, though, is far different from that of a person who has gone blind or lost a limb from the same condition.
It might be surprising, but the American Academy of Pain Medicine website states, “Pain affects more Americans than diabetes, heart disease and cancer combined.” One hundred million Americans suffer from chronic pain. In contrast, only 61 million Americans suffer from diabetes, heart disease and cancer combined, and that is if people only experience one. Without question, some experience two or all three. Some of the 100 million who live with chronic pain also live with chronic illness.
I’m one of those people.
Before I was fifty years of age I had severe osteoarthritis, lumbosacral spondylosis, facet joint syndrome, diabetes type II, and hypothyroidism — not a complete list. I have had some dozen surgeries, my first at the age of 16, and a host of procedures. I am in constant pain of some form. At the moment, I am woken each night from pain. I wear an off-loading custom brace on my left knee and a back brace and TENS unit whenever I leave the house.
Preparing for my day, including all the things women normally do, takes me about two hours, and there’s no way I can do that everyday. At a minimum, I need an hour to prepare to meet the outside world. Although it is rare I see people outside my home who are not in some way related to the medical or home care professions, I do my best to dress most days.
Although my mom lives in the same house as I, the remainder of my family is far away, and I am not able to visit them at the moment, even if I wanted. I am unable to fly or travel. I’ve not seen my father for several years now, and, although we talk frequently, I miss his presence.
Years ago, I stormed chased, loved to go spelunking, volunteered building trails in our National Parks, went on road trips and cycled cross-country. Today, a service brings my groceries to my door, my beautiful car sits stationary, I have an accommodation to work from home and often am inside the entire day. This is the third summer I have missed: no festivals, no vacation, no cycling, very little outdoor time except for a few walks in my neighborhood.
Here’s the kicker — I am generally happy and enjoy life as much, or more, than anyone else. Not everyday is a gem, and some are quite difficult, but I do get through them, each and every one, and I can say, without hesitation, I cherish them.
That is in part what this blog is about. I want to share with folks things I have found to stay in touch with others, to continue to be of service and feel I have a purpose. To enjoy this amazing world we live in, the same one I was once able to enjoy ‘hands on’ and ‘out in the field’.
I have made great friends around the world via the internet. People who I deeply love and who love me. I have found a world full of people who want to help, and their company and upbeat nature reminds me there is so much good out there.
I have found spiritual principles which are strong enough to get me through the darkest nights and most difficult days. I don’t go to a church, or temple, or synagogue, or mosque — so I’m not here to influence anyone’s religious views or to debate. But I have also not closed the door on spiritual concepts. I do not believe I am being punished or that life is lucky or unlucky. And perhaps, if you hang out here a while, this will make more sense.
For many in my condition, it may make sense already. There is, to me, a true kinship with others who live with chronic pain and illness rather than find them selves caught in an obsession with their condition and inability to change it.
Little things mean so much. Each day is filled with gratitude for them: windows, bird feeders, pets, cell phones. I am called to do something daily; to listen, help coordinate, provide experience. I even find ways to be of service half-way around the world. Sometimes, when I share these things, people say I am amazing – but it’s not at all. Different maybe, but not amazing.
There is down time, anger and sadness – but they do pass. There are many things I had to learn. I was saying, “No, I can’t.” Then someone suggested I say, “I’ll do my best.” I like suggestions, but that was hard. It was once rare to find anything I couldn’t do; that has changed. Learning to step back if I need to, to stop if it’s best for me to do so, can still be hard for me.
Regardless, I find the journey amazing. Sometimes I start things that seem as if they will never finish, but often they do get done, one bit at a time, piled together into lots of bits seems to get things done as well today as it did millennia ago.
This part of my life has required a change in perspective. There’s much of it that can be exhausting, there’s much of it that is fulfilling and there is some that is just fun. And when I compare that to my able-bodied counterparts still out there climbing mountains and cycling cross-country, I remember that life is kind of like that for them. Life challenges us to find our way and our place, regardless of circumstance.
And that is hopefully the second part of this blog. To share things I find and enjoy. Cams around the world, medical insights, tips on caring for our bodies without losing our minds, resources I have found helpful for me. Some might be condition specific, some will be more general.
There is an activist part of me too, a part that wants folks to know I deserve equality and want to be heard. I will do my best to be respectful in this regard. If I fail, or make a reader angry – I hope they can shed their anger and get on with life. I’m not worth being angry at, and it’s not worth being angry about. Life is out there (or, in my case, right here in front of my keyboard).
If you feel the same, I hope you find even more to explore and enjoy from wherever you are reading this. If you think I’m a bit too happy or don’t understand, please know you are still welcome to hang around a while and tolerate me as best you can.
The blog is my personal experience, understanding and feelings. Join me. Perhaps it will unlock the confusing code of how to live with chronic pain and chronic illness with, at a minimum, a daily gratitude or two for life.