The curse of the green dip...

So the saga continues, as I'm keeping this blog pretty up to date it only seems fair that I share my downs with you all as well as all my positives. We all know the pain of a relapse and that's horrible news I have to share today.... 

After nearly 10 months of yellow sticks and managing to get my pred consumption down to the lowest I've ever been since this all started three years ago today I had the dreaded call to tell me my results have indicated relapse. But just to take a moment here to be positive its is pretty early thanks to the use of the sticks and so far I have no swelling really which is always good, I mean that's one less thing you've got to try and control. I have to thank my Dr 1000 times over as well, who knows as I am back at uni I can't just get to see him, therefore he emails me plans of action and always is only a email or phone call away if anything doesn't go to plan. 

But yeah back up on the steroids today, not the best thing but only being put up to 30mg is a blessing I've been so much higher and so much worse off than I am at the moment so I'm taking that as a win and early find is always a good one! My housemates are under strict orders to not let me eat the entire contents of the fridge and I'm sorry in advance for the steroid moodswings that are to come.

We know this is a risk that's always there but I'll carry on laughing my way too remission one day I'll be steroid free! 

The little victories

Okay, I don't know how to start this post off, except by saying this is so thing that is incredibly important to me and after seeing a few chats based around similar experience i found the courage to share my experiences of the mental side effects of long term steroids and the anxiety i suffered as part of it. 

It's become clear to me that steroids seem to attack us where we are most vulnerable, for me I've always had an anxious streak and was prone to panic attacks even before I got NS, I think that's why pred always seemed to bring out that side of my personality. For some people it causes anger and frustration untill they don't recognise themselves, for me it was a longing to feel comfortable in my own head again. 

Like I said anxiety was common for me and I was surprised how well I handled being diagnosed, I brought out a fight in me at first and of course happiness when i first made it into remission. It was my second relapse that saw the worse anxiety, I felt like I was fighting with my own head even when my body was fighting to fix itself, it made everything a lot harder and there was a lot more tears. But the calm came after the storm and somehow (even though of course I still have bad times) I knew at what times the pred would get me at my worst and I managed to tell myself it was just the tablets talking. 

Like I said the anxiety comes and goes and the lower the dose of steroid the better I seem to feel, I don't know if this is true of other people that suffer this side effect? But i think I'm secretly doing a lot better than I think I am, I mean somehow I've got myself to uni and living away from home. I cope with the usually teenage hassles as well as dealing with the ups and downs of living with NS. 

When I see all the shared stories of the journeys people go on with this condition I think sometimes we all need to take a step back and be proud of ourselves for whatever victories we achieve wether they're big or small. 

Resuming usual service

As I explained in my last blog I've been trying to cut down my pred dose and I have to say so far so good, I'm only just past to two week mark but that's always abit of a celebration seeing a yellow stick for two weeks after a cut down. I've got to say I'm starting to feel back to normal even with an alternating dose, my moods seem pretty much back to normal (I say normal, as normal as it goes for a  stressed and overloaded by uni 19 year old girl)

But I've been in the normal routine for 2 weeks now too and feel like I'm pretty much keeping up with my work load and just living away from home again, without flaking, pretty good with the worry of relapse always in the back of my mind!

 This week I joined another Facebook group for people like me; so many different stories, sometimes I find it over whelming, I wouldn't wish this stupid thing on my worse enemy,  there is some wonderfully brave people out there. NS doesn't rule our lives or define who we are either, the strength to motivate yourself to live like you want and fight dodgy kidneys is what makes us NS suffers great. I have so much respect for you all.