People tell me to ignore the rude comments, the horrible comments, the meanness of others. Most of the time I can do this, pass off their comments and words…. They are people who don’t know me, people I don’t care about and will most probably never see again. THANKFULLY!
Every once in a while someone who I do care about, someone who I thought cared about me, says something. A few words that have real hurt and pain behind them, words that make me question myself, question my ability to be a better person, question why I do try as hard as I do just to live the way I do.
These are people that I thought loved me, people who have seen the changes I have gone through, the struggles I have had…..
Yet they have short memories, they question me about MY DISABILITY, the genuineness of it.
People who don’t ‘Believe’ it can be that bad! Because if it were as bad as I am telling them, then how do I manage to go to the gym? How do I manage to look after my children? How do I still read? Write? Swim? Cycle?
And how can I sit back while they struggle to earn a wage that barely covers the bills and just expect hard working tax payers to foot the bill for me ‘NOT WANTING TO DO ANYTHING’
….. ADDITION …..
I just want to stand on my chair in a crowded place and scream, ” I DO WANT TO DO THINGS, I want to be able to SEE”
I also have some ‘usable’ vision, which I use as much as I can, bu if I over do things then I pay, I struggle with bad headaches, exhaustion, yet an inability to close my eyes for sleep as they get very dry. So I limit myself. As I am sure I have said before, I take full advantage of technology, my phone, computer and free-view box for my tv talks to me.
I use my ‘sight’ to enjoy time with my childen, to help with homework, to cook nice meals, to shop for myself, to stay independant. I use my time when the children are at school to volunteer, to help others, to give back for all the help and support that I have been given.
I oringinally published this post when I was in a dark place, things are still pretty grey at the moment, but re-reading it, I have realised that I do not need to justify how I spend my time, I do not need to justify why I recieve disability benefits. I would much rather not ‘need’ this support. Because as any person with a disability or illness that limits their capabilities will tell you, we/they would much rather be fit, healthy an have no disability…. Even if that meant working a 60 hour week.