I try to remain positive. I am continually reading, hearing and occasionally even preaching myself that positivity and having a positive attitude helps. The thing is that positivity wont cure this disease. It wont give me my mobility back or take away the excruciating pain I feel daily. Positivity cannot replace the lost days where I was unable to play with my own child.
I am feeling somewhat overwhelmed today. My friend’s daughter has just turned one and it feels like only yesterday when I held her close breathing in her newborn scent. I’m unsure where the year has gone. My partner, Oliver was always told by his Granddad that when you get older time goes much faster. I can truly empathise with that feeling today. When I am in pain and nothing seems to be helping I long for the day to be over so I can lie in bed and sleep it all away. When I dream I am no longer in pain. I am no longer sad. I am simply free. Free from this disease and the grip it has over me.
But then I wake up and it’s just another day gone. Another day of my life I wont ever get back and still a day that I wasted. I feel so worthless, life is precious and yet I am wasting those days. I think back to my friend’s daughter and I think of how many of those days between holding her tiny body to today that I have wasted. Then I think of my own child and the three years that have passed and the days wasted are adding up. So I set myself a goal that tomorrow I will not waste my day I will be more positive.
I am luckier than most because I am blessed to have my partner Oliver who is able to ground me. When I feel so tired with life I could give up he carries me until I am strong enough to carry on. He makes me list all of the positives in my life and although sometimes it feels like there are none the list is quite extensive. As we do this exercise together the fog begins to lift slightly and I am able to see that although sometimes it doesn’t feel that way, in fact the positives far out way the negatives. Positivity doesn’t free us from the shackles of this disease but sometimes it is what we need to continue our fight.
So even though sometimes when people tell me to ‘be positive’ I want to punch them in the face, they are right… in a way.