Support systems

Finding new topics to talk about on here like i've said before is never the easiest, I mean you all know I won't shy away from anything personal if I think that anyone that reads this could relate to it. So I figured today i'd take a look at something relevant to every one of us, the people that support us and how Nephrotic syndrome can often put strain on relationships.

The idea for this blog really came from me realising that when I'm on a pred wean I'm a bit of a bitch really. Like I realise the people closest to me are the ones that support me and are with me every step of the way on this journey, so why are these the people I push away the most when i'm upset? It seems ridiculous but anyone living on pred will know its impossible to explain to anyone how conflicted and unlike yourself it makes you feel, so because I can't always explain myself I tend to feel really guilty, I don't know if other people feel this too?

I am incredibly lucky to have a family that do support me through whatever and have made it possible for me to continue on with a normal life and make it through the first year of uni despite of two relapses this year. They listen to the way things make me feel, even though most of the time I cant even make sense of it myself.

I owe a lot also to my boyfriend for dealing with my random flaky moments - deciding to live with me and my dodgy kidneys was a very brave move, I mean the random panics about my future and what this illness is going to lead to are hard enough for me, let alone someone who shouldn't have to take this on. Oh and he didn't disown me when I looked like a scone because of the steroids so he really is a keeper.

Finally I think its easy to focus of how much family help and go through this with you but honestly I can't thank my friends enough for their support, for being there when i'd decided to push everyone away but forcing their way back in anyway. I have friends who were brave enough to make jokes about all this even when I was at most lowest and honestly it helped me to not take myself so seriously. My best friend helped me love my scars and accept they were part of me, not to mention sitting with me through panic attacks and all sorts.

Think what I'm trying to say is that support comes in the smallest ways anything as simple as a text from a uni friend checking I'm okay makes me feel so much better. I think I speak on behalf of a lot of NS sufferers when I say even if its hard to show it because of what we are going through, help and love is so important and makes all the difference.

Never Just Plain Sailing

I have always used this blog as a place to poke fun at myself and air some of the weird and wonderful things we encounter through nephrotic syndrome. Today isn't such a jokey one- today is a look how rubbish I feel because of steroids and I want to moan about it blog.

Since my recent stint on slightly higher steroids started last month I really felt like I was handling things well, well maybe I still am, but since abit of a rubbishy hospital trip that failed to tell me anything really with a consultant that seemed as confused as me and said my levels were 'kinda almost back too normal' which was really helpful i've been on bit of a downer. I try and keep a positive attitude but honestly after three years of brave facing it you just need a cry, a hug and to actually let it all out and I think today is that day.

If you've read my other blogs you'll know that steroids tend to effect me in the anxiety department but this time I've had a touch of the rage as well! not to mention the hunger is back, I honestly hate it I just want to eat the entire contents of the fridge, but then if I did i'd then cry because of feeling fat and guilty, but if i didn't i would cry because I was hungry! Honestly for a 20 year old girl there is a lot of crying going down at the moment and a lot of napping, pretty sure I'm regressing back to being a toddler.

I've read a lot online and on the support sites about kids struggling with the mental side of steroids and I couldn't feel more sorry for them, I mean some days I cant hold it together and I'm supposed to be an adult (well sort of) so I can see how it must be hard if you don't get the right support at school, schools hard enough without having to fight all these horrible side effects that arnt even really you (it really is lie having an alter ego!) So I have so much respect for everyone that deals with this everyday!