You know the old saying that one year to a human is like seven years to a dog? Well in the land of the Autoimmune and Chronically ill, a year to a healthy person can feel like ten to an ill person. A lot can happen and a lot may not happen; all in the same year.
Since starting down this difficult road, which by the way seems like a life time, I have experienced years of heart breaking pain and suffering, and years when I felt I might be able to finally manage my disease activity to the point where I can enjoy a bit more of the world outside the confines of my bedroom. These years are never predictable and can not be controlled.
I find myself in the middle of a what I will call a SPOON year, since the concept of spoons seems to be a globally accepted one to the autoimmune and chronically ill. A spoon year for me is one with a lot of pain and very little mobility. A spoon year can mean a step backwards in treatment and an increase in disease activity. A spoon year may also mean the arrival of more symptoms or side effects. It can also mean encountering some very difficult people; both inside and outside the medical profession. In short, it is the type of year that you can’t wait to end but can never know whether it will in fact improve the following year. You simply hang on and hope.
A spoon year will also mean that you are reminded of the importance of the little things once again. Things like being able to eat normal food again (I am currently not tolerating anything resembling food and so we are desperately looking for meal alternatives). Forging new friendships and making new ‘online’ connections with people who ‘get it’ will often be the difference between giving up and carrying on.
A spoon year also tests your confidence and inner strength. In previous years I would often find myself being praised for how “…well I was coping with it all…” but this spoon year, I can see I am barely hanging on. I work extra hard in these years to distract myself with trying to help others and take the focus off my own situation, which is exactly why I have started blogging and sharing some of my experiences. It is with the hope of connecting, or possibly even helping someone else that I do it, as it is often incredibly painful and physically challenging to do something as simple as blogging.
A spoon year makes me examine the things I really enjoy and throw myself under their protection while I ride out the storms. I listen to my music. I talk to my hubby. I cuddle my fur kids and I gaze upon my garden, deliberately trying not to ‘over think’ my situation or what might be in store for me. I am glad I don’t know.
Spoon years are the hardest years that I ever face, because on top of my fragile and changeable health situation, I have to be able to contend with whatever else the world wants to put in my path and the normal ups and downs of daily life. Bills still need paying. Problems still need solving. Housework still needs doing. Friends still have needs. Family events still come and go. Nothing stops because of my health, or lack of it, and this is both reassuring and unbelievably difficult.
This spoon year has seen me shed more tears than other years. Suffer more pain than other years. Feel more out of control than other years. But it has also helped me find my voice more than other years. It has once again renewed my love and respect for my husband, my fur kids and all those that reach out their hands to me to keep me from drowning, without whom I would surely be lost.
Although I have barely been able to move and have had to break more social opportunities than I care to remember, my constant hope during a spoon year is to always show the people I love how much I love them, and to make sure I show myself that same love and respect.
# I acknowledge that I did not ‘invent’ the term spoons or spoon theory and give full credit to its original author. It has become an accepted idiom within the autoimmune and chronically ill community, however full credit must lie with its original author.