Look after yourself

So this weekend I took another blow on my nephrotic roller coaster. After a routine eye test a few weeks ago my optician found a blind spot in my eye, he tested my eye pressure which is something they worry about on steroids, which were fine but transferred me to the hospital just too look abit deeper into this blind spot. 

So on Saturday I went to the eye department ( a nice change from renal!) and had the works done; eye scans, field tests and even had my pupils dilated so I looked like a vampire for the rest of the day. The blow came when the specialist established that I had the early stages of glaucoma and although my eye pressures were fine currently, when I had been on high steroids for long periods the damage had already been done. Steroids seriously have so much to answer for, the doctor advised trying to get off them but of course you all know it's never that easy!

Fortunately at the moment it can be treated with eye drops and should all be okay. I was just in shock from how much steroids truly wreck your body and I was extremely lucky that I have regular eye tests due to poor eye sight and therefore this was caught early. 

I've never been warned about steroids effect on your eyes really, not to this extent and wasn't sure if others have been. I just wanted to post this to make sure people do keep a check on it especially parents of young suffers as I'm sure that eye tests are the last thing on your list with everything else you have going on but you don't want something like glaucoma to contend with!

At the moment I feel like all this is really testing me but by sharing it might help someone else avoid it! Forgotten what it's like to have a quiet life, nephrotic really does take over every aspect. 

Living with an invisible illness

Most people reading this know what its like to live with nephrotic syndrome the ups and downs of relapses and in fact the sort of troubles we have to face on a day to day basis, its really no secret within our little community of Neph suffers that sometimes its can seriously be a struggle, but to the rest of the world most of the time we look totally fine. 

For me I think this is both a blessing and a curse. Don't get me wrong I know the swelling is a pretty obvious mark of the syndrome but if I'm being honest as a teenage girl when I was diagnosed most people just thought i'd started piling the weight on, I mean even my first date with my now boyfriend he told me I 'looked chubby not fat' and it is seriously easy to confuse the swelling with weight gain especially at my age, which is totally fab for my self confidence. 

The side effects of steroids are another thing that doesn't come across great when people don't know your on them. I've been known to burst into tears in the middle of town and some days when my mood is down I've not wanted to face people all together.. not easy when people think your perfectly fine. Sometimes I think I must just seem like a massive moody cow. 

Sometimes I do think that because when i'm in remission NS doesn't impact as much on my body and I can carry on as normal that I'm incredibly lucky to be able to do so. The times I do feel normal it is easy to carry on and pretend its all okay, because don't get me wrong sometimes is it all okay and i'm thankful for that. 

 But at the end of the day living with something that totally changes your life and sometimes your personality can seem impossible when people don't realise how much of an issue it really is. Just because they can't see it or they've never heard of it assume its not anything important.