Today I got thinking about how I actually cope with nephrotic syndrome on a daily basis, don't get me wrong it's not like you ever forget its there- constantly taking meds and working out how I'm going to deal with being due to take my Tac in the middle of a seminar don't really put it to the back of me mind. Despite all the rigmarole that comes from living with something like this there is times that I do feel like a normal 20 year old and honestly its refreshing its so easy for this to take over your life but sometimes you have to take a step back and just be you.
For me it's sometimes quite easy to hide that I suffer from a constant invisible illness and I look the most normal I have in years (not as hamster faced from the pred!) but also starting uni last year allowed me a whole new fresh start, no one knew my business and I could pick and choose the people I trusted to confide in about what I was going through. Not that I want to hide the fight I've been through, I'm proud of myself- but sometimes it's nice to walk into a seminar room and just think that most people don't know anything about my rubbish kidneys and it allows me to feel normal for little while. Which is sometimes all you need for an hour to help you get back on track.
For me escapism is something I use to cope with the everyday struggles, its probably similar for most suffers, Being an english lit student books are obviously a main source of relaxation, but I also find creative writing is a really helpful way to get out all the bottled up emotions that come with being a neph patient! (starting this blog has been a labour of love for me and a major outlet for all my issues) I just think that escaping from the crazy existence for a moment can help no end, wether its doing something creative or playing a sport. I've also just taken up yoga and thats held with my anxiety so much, it takes my mind off everything for two hours a week as well as helping to keep my body active- I can't recommend it enough to anyone who needs a break.
I guess what I want to say is just look after yourself as much as you can, Living with nephrotic syndrome takes its toll on all of us wether a sufferer or a carer and just by giving yourself a little time to just be you and not totally controlled by what we go through is what you all deserve.
