Thursday 28 June 2018

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.