5 years down the road...

Its really hard to believe i'm writing a blog on living with NS for 5 years; half of me thinks its flown by and the other half can hardly remember life without it. It's times like these (I hope someone out there gets the Foo Fighters reference) that I have to thank those around me for all the help they've given me that has allowed me to continue to follow my dreams in spite of all this. 

Being thankful for those around me seems even more important this year as I've managed to complete university and am waiting for my very final results which would of been impossible without my family, boyfriend and especially the friends i've met along the way. Despite not knowing me from the start of all this they have been nothing but supportive of my constant need to find the nearest loo and my flaky steroid moods. So girls if your reading this I cannot thank you enough. Also, an extra thanks to the friend who sent me an anniversary card for today as she knows laughing about these things is my fave way to deal with them. 

My AMAZING friends and family
who get me through everyday. 

It's difficult to believe after 5 years I've still not had a days break from steroids, truthfully sometimes I feel I've forgotten what its like to not rely on meds. Things are looking up because as I mentioned on my page it's looking like Rituximab is on the cards as my next treatment, lets hope this delivers a well needed break. 

Despite all of the ups, downs and 12 relapses i've had in 5 years if I could go back and speak to my 17 year old self i'd let her know that even though its going to be a long journey she's stronger than she thinks she is. Going though my teenage years worrying about scars and moon face has not been ideal but I'm still here having a laugh and smiling. 

Even though I look pretty normal on the outside, no one really knows what battles your facing. FSGS has turned my world upside in the last five years but heres to keeping my head up for the next five. 

It is okay to be in your pyjamas at 3pm sometimes...

I AM SO SORRY, it has been so long since I last wrote a blog but I have had the craziest few months (okay 5 months but who is counting right?) It has been madness this end, I'm under 2 weeks away from finishing my university and moving back home for the final time before me and boyfriend move up to Lincoln for good, life's moving on and I'm freaking out! Hoping everyone thats getting through school, exams and stress okay as well!

Anyway, I know I have always been an advocate of going out and getting what you want from life despite of nephrotic syndrome. Trust me I still think that this shouldn't stop us, but all I wanted to say today is that sometimes you've got to give yourself a break. I am beyond proud of myself for what i've achieved this year: being able to submit a 11,000 word dissertation and getting a 2.1 in it, securing a place on teacher training and completing university in general. All I'm saying is that i've been incredibly run down, burnt out and it's not exactly ideal.

I'm running on, but what I’m trying to say is that it's okay to be tired, it's okay to be run down, and it is 100% okay to be in your pyjamas at 7pm on a Saturday night eating Ben and Jerry's (as I am right now) once in a while, we all deserve the rest. Sometimes I need reminding that i'm not super girl, I can't charge around at full speed all the time and think that my body is going to cope with it.

It's been 5 years next month and sometimes I forget I'm ill, I know that can only be a good thing, but at the same time I can't feel guilty when I need a rest or can't keep up with everyone else. Trust me i've felt the guilt, having to go home rather than stay out with friends; I end up trying to explain to everyone why i'm tired because I always feel like I owe them that. My closest friends always tell me to stop being stupid and that I don't owe them an explanation.

Just look after yourself, if you need a night in and Netflix binge then go for it. Don't run yourself down to completely empty, i've been there and it's not fun. Yes you can do whatever you want with your life, even with NS but maybe have a night in before you try and conquer the world.