The more I think about it the more I realise for us NS sufferers it can be a strange and a times isolating existence, when nobody truly understands whats going on with you and quite frankly often thinks your being bit of a drama queen.
I'd like to start by admitting I've had a fair few run in's with people that despite you trying to explain whats going on belittle our everyday struggle as its something they can't see and therefore refuse to understand. I mean I'm pretty sure being a teenage girl when the swelling hit everyone just thought i'd got chubby and I got a fair few snide comments for getting a letter from my nephrologist for special consideration during my A levels, hey not everyone understands the mental effects of long term reliance on pred and not many people are willing to listen either.
Now thats my rant over, just needed a vent as i'd seen several people struggling with the fact so many people are unwilling to understand. Now onto a lighter note, I've been meaning to blog about this for a while after me and my cuddly kidney (his names sidney btw) got a fair bit of love on twitter.
Although he was a joke present from my boyfriend, it got me thinking what a great idea things like this are for children going through problems and mostly about how much nephrotic kids could benefit from something like Sid. For me I felt it would be a good way for them to share with friends why they might be upset or behave little differently, but also could provide an easy and more relaxed way for parents to talk about NS and explain different things to their kids. Plus I'm pretty certain they would make great hospital companions.
Sometimes it's hard to make light of Nephrotic syndrome when your struggling with relapses and medication, but I always smile when I see Sid, I mean at least I have one kidney thats reliable (although he is fluffy and purple!)
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