A common misnomer is that chronically ill people lead boring, easy, relaxed, idle and dull lives. I guess to the untrained and uninitiated it will certainly be a life beyond their comprehension but it is never idle.
It may seem dull that we no longer do many of the fun things that able bodied people can do, or as often, but it doesn’t mean that all of life’s inspirations, emotions, struggles and complexities magically disappear from us. The reality is that we now have to find different ways to do what everyone else takes for granted.
To give this a little more context I will use my own journey as an example. Over a decade ago things became increasingly difficult health wise and seemingly overnight I found myself blind in one eye, weak, numb, unable to move, balance gone and suffering excruciating joint pain, however I was still a project manager for a multinational I.T. Company and I had many daily tasks to perform. I simply had to try and manage them as best I could and from the confines of my bed and I endeavored to do this for as long as I physically could.
Each morning began at 6 am with preparations, status updates and then on to calls all over the world and meetings with staff and customers.
For years I oversaw international projects and roll outs from my home base and since my husband and I were strangers to the city we were now living in, we had to do everything on our own. Cooking, cleaning, shopping, working, caring for our family, and everything else in between, these things still had to be done. There was never a dull moment and still hasn’t been to this very day!
As the years have passed by there has never been a day in which I (or my husband) have idly sat by and squandered the hours away. The reality is that somehow you have to make room for everything whilst still suffering and struggling.
Sadly this means it has been many many years since either of us have been on holiday and the opportunities to frolic and laze are few and far between. Despite what impression that people have of the chronically ill or disabled the reality is for people like us that we never have days off. Ever.
We are always working hard at coping, surviving, maintaining and trying to make the most out of every moment of our lives.
I often find myself unable to, and unwilling to, go into details of how we carry out our lives because it always seems that to most people (even those who should know better) it is beyond their experiences and comprehension.
I have rarely explained the daily challenges and routines we face, or how they can often become even more painful or complicated in an instant, because it is very rarely truly understood. This has always caused us a great deal of communication obstacles with the outside world and is precisely why we don’t really tell anyone what we have faced together over the years. It can feel like trying to explain Greek philosophy to a newborn giraffe.
I don’t bother detailing how we have tried to order and stabilize our lives and yet somehow still managed to renovate our home, build charities, start businesses and care for rescued animals… all whilst facing excruciating daily pain and hurdles. Sometimes I don’t even understand how we have managed so far!
But these are the types of reality that many autoimmune sufferers face all day everyday and very few people have any idea of what it is like, and many more don’t want to know.
There are so many individuals and families out there who are struggling with these diseases and have somehow still managing circumstances that would boggle the mind of the most skilled and talented entrepreneur!
My husband and I have amazed even ourselves when we look back and realize the skills that we have had to acquire, the strength that we have had to find, the perseverance we have clung to, the patience we have exercised, the determination we cultivated and the love we continue to show in our daily battles. I could never have imagined such things were ever possible and achievable by two individuals. Yet hundreds of millions of people around the world have had to find a way, we don’t have a choice.
Today was a real moment of reflection as I have looked back on all that my husband and I have faced and accomplished and I am truly lost for words. We have worked so hard to continue our daily lives and create a strong future for ourselves without anyone ever really knowing all that we have done and all we continue to do.
From the outside it may indeed look like we have boring, house bound lives that most people may consider dull and uninteresting but just like someone standing on a beach and looking out to sea, they can never truly comprehend all that lies beneath the surface of these mighty oceans and all the mysterious that lie within.
One thing for sure though, it is never dull!