I didn't think that I would actually have the courage to put my thoughts down in words for people to read but I have to come to realise that I can't always be the positive person that everyone thinks I am. I want other NF sufferers to see that it is ok to have meltdowns and feel mad at the world, after all this is one of the main reasons I began writing "living with Sneaky tumours", to help other people living with NF. Sometimes I have down days, and over the last couple of weeks I have had several of them.
Recent events that have happened to people I know have made me take a good look at life and I don't like what I see. I can't get the thought out of my head that my life is like a ticking time bomb...waiting for the next time it decides to go off and create more havoc. It is so hard to get NF out of my head when I am constantly reminded of it with the knee and leg pain as well as my inability to hear. In my low days I wonder what I ever did to deserve the terrible things that have been thrown at me, trust me there have been a lot! I feel terribly guilty for feeling sorry for myself when compared to some I am very lucky. There are times when I feel anything but lucky. When I turn down a night out at the comedy club because I'm afraid that I won't be able to hear them so I won't find it funny and my back couldn't handle sitting down all night after being at a card class all day.
When I cry myself to sleep because I can no longer stand the pain.
I seem to have done something to trigger of the pain in my hip this week. It has been excutiating, making for a very crabby Kylie. Even the pool didn't provide relief for very long.
Thanks to the wonderful Fleur for doing some dry needling in my hip and knee I was finally able to get to sleep without the pain and discomfort that I usually endure (it was like heaven) and touch wood it has been a couple of days and it is still at a level that I can manage.
A little ray of sunshine has finally come into my world.
A little ray of sunshine in the shape of a passport and a ticket to see Kasey Chambers live at the Melbourne Zoo at the end of February.
I was invited out to dinner last night with the lovely people that attend 'Next Step to Fitness' and it was there that I was told about the ticket they had purchased for me. Thank you to you all. My Mum summed it up with her comment on Facebook yesterday "you have a wonderful bunch of friends". XXX