I was diagnosed nearly three years ago now. I have been in and out of hospitals as you all have too and I have been confined to a wheelchair but managed to get out again.
Most days I just get on with it, but I hate moaning to my wife who is the most wonderful woman. So here I am to vent to you.
Today I don't accept it. Today I don't feel as though I want to be brave or be strong, today I want just one day of feeling normal. Without pain, without anxiety and just able to be me.
Today I want to spend the day with my girls, fly kites, build sand castles, make cakes, run as fast as we can and sit and have a picnic together. Just us.
Instead I have mouth ulcers that burn, hips that make me shuffle when I walk, my right arm and neck are so painful I just don't want to move and it's relentless.
I know that it will pass, but passing quickly would be great, let me get back to being me and let me be their dad as he used to be and not restricted as I am now.
Let my wife get some extra sleep or time to herself without worrying about me.
Maybe one day.
Thanks for listening 👂, one day I will return the favour.