One foot in front of the other...

I had so much support for my last blog and I cannot thank everyone enough for making me feel that through opening up I can really help others. Equally I'm so pleased to be making people more aware of nephrotic syndrome in general, it isn't something that many people know about, so thank you to anyone that takes the time to read this blog. My last post wasn't the most positive thing I've ever written, so I felt that I needed to write a follow up. I mainly just wanted to get the message out there that things can only get better (in the unfading words of D:Ream.)

Relaxing half term with my pooches. 

Since I wrote my last post I can honestly say that I really have tried to make changes for the better: i've set the wheels in motion to do my teacher training part time, I know its not ideal but I will still get to where I want to be, even if it takes me a bit longer. I feel like I can regain some control and have some time to just get myself back in the best place mentally and physically. I honestly think I might be the luckiest person alive to have such a supportive network around me. People that I would of never of imagined have picked me up and offered their support. I also went back to Lowestoft for half term and spent some well needed time with family and my lovely pack of dogs.

Medically, things have changed too. I went to see my specialist on Monday and so far I've not had a relapse on Rituximab and i'm managing to wean off all my other meds, so kidney wise things are fab. However, recently I've not felt well at all and have constantly struggled with aches, pains, constant tiredness and just being really run down. So after going through everything with my specialist he diagnosed me with ME/CFS caused by long term immunosuppression and what my kidneys are doing to my body. unfortunately there isn't really much  we can do, but in the long run it should pass (everything crossed.) I have to admit it hasn't been the easiest thing to come to terms with, but at the same time I'm kind of glad I know whats going on, I was beginning to feel insane when I was going to bed at 8pm and still struggling with just going to work and doing everyday activities. Alongside that my Doctor also found out I was a bit deficient in phosphate, which can also leave you feeling a bit weak. So all in all I'm pretty weak and watery at the moment! Luckily I can eat foods to boost my levels, my doctor just thinks my kidneys might be leaking it a little, but hopefully we can sort that!!

Just wanted to update you all on the rollercoaster that is my life with NS. I am just taking one day at a time and doing the best I can.  I Hope everyone else is well and that everyone is seeing lots of yellow dips!!

Confessions of a girl who hides behind laughter...

I try to be super positive on this blog, but today always feels like an important day to be honest and share your experiences if its going to help others. Today is word mental health day 2018 and while most of the time our condition is physical, it has a hell of an impact on your mental health as well.

 The title of my blog refers directly to me actually, I am a NIGHTMARE for pretending everything is fine to the outside world, well actually I am struggling. This is the thing, I pride myself so much on being able to make people laugh that I would rather make a joke at my own expense rather than admit  that things aren't fab. Don't get me wrong, I talk to my nearest and dearest about the problems I face, but I'll still try and get a laugh even if I am crying to them, I never want to be a burden.

But here is the thing guys: I am not having the best time at the moment. I'm going through a lot of changes in my life and alongside having to fight with my kidneys I'm feeling drained. I've lost my belief in myself because I'm tired ALL THE TIME and its driving my brain up the wall, not to mention that I cry 24/7. I know this is something that really effects a lot of us. We are so busy worrying about what's happening in our wee and our bodies that we forget to take care of our minds. So many of the drugs that we are put on effect anxiety levels and most of the time I feel like my brain hasn't got a clue what's going on in my body, leading to all those horrible feelings.  Not to mention the fact that the symptoms like swelling, scars and moon-face make you feel poop about yourself as well and have really lowered my self worth. I don’t know about you guys?

So what I'm saying really is its okay to admit that you are not okay. Right now I know I'm not. So, I'm trying to make some changes to get myself in a better place because I know my anxiety isn't going to get any better if I carry on living the life that I am right now. The most important thing is to talk to each other and practice a load of self care: your job, your assessment, your presentation, is not worth risking your health over . YOU ARE THE MOST IMPORTANT THING.When we are already so frustrated at our kidneys for doing what they do, we do not need to neglect other parts of ourself. I've always spoke to my specialist about how all this has effected my mental health, I'm not saying that its helped much, but its good for them to know whats going on.

You are all worth so much self care and remember even the girl who is trying to make you laugh is struggling. Always be kind and never be scared to speak up, there is no point fighting to get into remission constantly if your mental health isn't letting you live.