Swings and roundabouts


When it comes to the chronically ill, Autoimmune and disabled the internet is swarming with either wonderfully inspirational slogans, about how to keep fighting and how to never give up, and the other ones are about how bad these diseases are and how much of a burden we bare. We can swing between the two on any given day; and it can change hour by hour. But we usually exist somewhere in the middle. You see some of the hardest things about Autoimmune diseases is that it is constantly changing, like the tide, and the sand shifts beneath your feet so quickly. Stability and predictability is no longer possible. It is one of the burdens we must learn how to bare everyday. Every hour. Every minute.

When I rewind to the days of the past, although I have forgotten a lot, I remember a time when life was just as challenging and confusing but in different ways.  I did my best to understand them then just as I struggle to may sense of it all now.

I realize that some of the questions which where important to my coping and learning then, are still relevant to some of the challenges I now face. There are some important guides and tools that are still useful and I ask myself those same questions over and over until I am closer to appreciating and “living” my life and completely as I can.

Firstly, I must not allow myself to compare my life and my journey to those around me. We are all different and ‘comparing’ only diverts me from where I should put my strength and efforts productively. Secondly, I must be able to embrace who I really am at each stage of my life. Be able to look deep inside myself and recognize what my real nature is. Strengths, weaknesses and purpose. When I know who I really am I can be at my strongest and most peaceful. Thirdly, I owe it to myself to know what makes me truly happy. No one can tell me who that is or decide it for me; me interests, my pleasures and my joy is what gives my life meaning and helps me find my ability to go on when all else feels lost. And finally, the ability to remember what I want from myself and from those around me, even the simplest things, is what directs my hopes, my efforts and my choices. I try very hard to make sure that these expectations are healthy ones and not beyond my reach (or the responsibility of others).

I still try and remember these things now, in this swinging, painful, chaos. I still try and remember these things so I can try and understand how to keep track of  life and so I can try and climb to my feet again. Always trying to get to my feet again.

Maybe this isn’t news for some people, or maybe it  might be helpful for you to consider the next time you are faced with an impasse or a crossroads. I am just glad that I kept it close in my mind and heart over the years as my life has gone through so much change and so much challenge and especially when rock bottom happens; and it happens regularly. That’s what happens when you have illnesses that swing. Some days are up and then some days are very, very down. It helps to remember what makes me more than JUST an illness and more of a work in progress.

I still read those inspirational slogans and relate with those who share some of my trials and struggles, but hopefully I know a little bit more about myself and a little bit more about my life.

Gentle hugs,


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