Uncomfortably slow. A lovely Newton Faulkner song. Have a listen, the words ring true for me right now.
So don’t take my photograph ‘Cause I don’t wanna know how it looks to feel like this. As cars and people pass. It feels like standing still but I know. I’m just moving uncomfortably slow, yeah, slow…
Something’s gotta change. I know I’m lucky in a lot of ways. So why do I want more than what I have?
I feel like I’m stuck in a rut. I’m waiting for the inevitable to happen (dialysis) and want to go out and do loads of things before I have to spend hours out of my week tied to a machine but some days I don’t have the energy to get out of bed!
I feel bad that the people that care about me worry about me and I feel like I’m holding A back from things he should be doing.
The world carries on. The odd friend texts to see if you are ok, others stop making plans with you and some don’t make contact at all. Others you know would drop everything if you needed them. I don’t expect people to take time out of their life to worry about me, I just feel like my world is standing still and everyone is having fun without me.
People are having babies, getting married (this is not a hint A) and going on holidays. People are having nights out, date nights and making plans. Sometimes the biggest achievement of my day is getting dressed or washing my hair.
I feel like I’m wasting my dialysis free time but don’t have the energy to do what I want to do – it’s a catch 22. I have to cancel plans, some friends understand, some friends don’t.
Don’t get me wrong I know people are worse off than me. I don’t want people to feel sorry for me, I just want people to understand. I have a disease. A horrible condition that I feel is stripping me of the things I love. But I won’t let it win. I’ve done it before and I will do it again. The people that matter don’t mind and the people that mind don’t matter. The disease is a part of me but I am trying my hardest not to let it define me.