It's already a lot to ask of one's self to want to give the best and be the best... and when illness comes into the picture, well, the script needs to be rewritten. It needs to include time off for plenty of rest, for pain, for visits to the doctor, for hospital stays, for side effects from medication that make you feel exhausted, for down time alone... it is no longer possible to be all things to all people.
When I started having symptoms of Crohn's Disease I was plagued by guilt as well. I felt that I was constantly failing. I wanted to do so much... but I couldn't as I was crippled by the symptoms. In the end I felt like my world was crumbling. The world that I had built in which I was, to some extent, in control over what happened in the course of the day, and the world in which I had the energy to pursue my passions was falling apart.
I was reduced to a very simple and basic motto : "Just get through the day". That was all I lived for and all I wanted after awhile. I reduced the expectations I had of myself, and in the process the expectations of everyone I had around me in my family. It was no longer the most important thing that "if something was worth doing it should be done well or not at all". For a season in my life I did very little because I knew I couldn't do it well... but now I am happy to accept that some things don't have to be perfect, and that with many things in life just giving what we can at that point in time, no matter how little it may be, is truly enough.
I still struggle with guilt. Not a single day passes when I don't think about how I could be so much more than what I am... and yet I also realise my limitations due to chronic illness. Not a day passes when I don't remember what my life was like before Crohn's... and I miss my past life and the simple joy I had of being able to do whatever I wanted. If I had known then that I would have had to live with chronic illness and all its debilitating symptoms I would have drunk so much more deeply from the cup of life... I wouldn't have wasted a single minute of time in sadness or inertia... I would have truly enjoyed the freedom that I had, but didn't truly appreciate, of life with a healthy body.
How to move forward then to living a life with chronic illness? Guilt and regret, sadness and sorrow... these visit whether I want them to or not, but I do not let them linger. I live for the day, but I also want to plan for the future. What unit should I use? The week, the month, the year? Five years from now? I do not know. I only know that I must think ahead to something better so I can get through this moment.
Hope keeps me alive. Hope that tomorrow will be a better day.