Why I’m not ashamed...

Today a friend of mine who is also a sufferer of NS posted on a support site to raise awareness of the links between living with a long term chronic illness and suffering mental health issues. So between us we both decided to post on our respective social media pages about our own experiences. We honestly both believe that honesty is the best policy. On this blog I have never kept away from talking about mental health, because I always wanted to prove there shouldn’t be a stigma attached. 

From a young age I have seen the effects mental health, which is why I have always been the first to talk to my family about how I am feeling. I know for some people this isn’t the case; so by writing these blogs, Matt and I are hoping to show that if you suffer from both a chronic illness and mental health issues you are certainly not alone. 

Firstly, I’d like to say I am on antidepressants and I most certainly am not ashamed. After many many years of suffering with anxiety (certainly not helped by NS) I finally took the steps I needed to help myself. It has been 5 weeks and I have to say I honestly feel like the best version of myself again; not battling through everyday. I’m not cured by any sense, nor did I think I would be, but I’m singing in the shower again (its the little things right!) 

I know I was extremely lucky to be put on meds that worked for me straight off the bat; I know many people can have horrible experience. However, if you can keep going and find something that works for you then it is worth it. One thing that really gets my gander up is when people poo poo antidepressants because of the side effects. Sorry, we put ourselves on horrible medication to fix our kidneys and we keep going because it makes us better, why do we see antidepressants as the enemy? I’m not saying stick with something that is giving you awful side effects but, we need to stop viewing mental health as something different to physical health. I put my body through cyclosphosomide at 17 despite the fact it could have made me infertile; yet some people would suggest that taking something far less dangerous to sort out my anxiety is ‘too much’ and I should ‘just be positive’. 

Of course using counselling is amazing and works for many many people especially that are going through long term health issues and many other things. However, for me I knew it wasn’t right, I will always find something else to be anxious about no matter how many times I talk anything through, I come from a family of anxiety sufferers; I pretty sure its in my make up. Some of us just need some tablets to help us and make us our minds function properly. 

Whoever you are and whatever you are going through, talk to those around you and keep an eye on everyone you love. 

How is it Christmas already?

It has honestly been one hell of a year; things have been crazy to say the least. If you would have told me this time last year that I would have had Rutiximab this summer and only be taking 5mg of steroids I don't think I would have believed it. Two relapses this year is also something I'll count as a positive, obviously my relapse in June was a horrible one, but I've still come out the other end. I still can't help feeling super nervous in the run up to Christmas, filled with constant worry that something will ruin my festive period. This feeling isn't helped by the fact that I have an appointment with my specialist tomorrow and always worry about what he's going to say. I know my dips have been fine, its just a worry what's going on in my bloods! I just need to remember that as soon as my appointment is over I'm heading back to Lowestoft to spend a couple of weeks with my wonderful family.

2018 has seen plenty of change and no doubt 2019 will see even more. I honestly can't believe I've graduated from university this year, when there was times I didn't think i'd even be able to go. Tyler and I have also moved into our own place and moved 120 miles from home. I've started my teacher training course; which hasn't been easy with all the issues i've had going on, but i'm getting there slowly. This new venture has meant i've had the pleasure of meeting some of the most supportive and wonderful people.Things towards the end of this year haven't been the easiest, having to deal with suspected CFS hasn't been fab, i've struggled with not feeling like myself, having to adjust to what I am able to manage and not be able to run at 1000 miles an hour anymore.

All of this has really effected my mental health, so 2018 has been the year of trying to put myself first. As people who read regularly know I have always struggled with my anxiety. This year hasn't been any different and coming to terms with the CFS has left me feeling really down and lost. After years of struggling to get by I decided to finally get some help and went to the doctors last week. I've finally decided that I need to make my own feelings a priority and hopefully i'll be feeling like my carefree old self in 2019. BBC breakfast did a wonderful piece on the the links between kidney issues/ transplants and mental health. I know I haven't had a transplant but what they said really hit home and I think it's something we all need to talk about.

 But overall 2018 has been an exciting and crazy year. Wishing everyone a happy Christmas and a wonderful and healthy 2019. May all your dips be yellow over the festive period. I'd like to thank the renal team at Norfolk and Norwich for being wonderful and always putting my health first, fighting for me to get the treatment I need and always being supportive.

 Happy Christmas one and all! Only 6 sleeps to go!!! x

In the Words of The Beatles...

Yep as said by the Fab Four all those years ago, 'I get by with a little help from my friends'. Needless to say, the last couple of months have been harder than I ever imagined. Im still ploughing through, still giving my course everything I can and just trying to come to terms with the way my body is feeling. What has hurt me the most is coming to terms not being able to do things I really took for granted; I mean I used to walk everywhere and now I can hardly get up the stairs without my legs aching. ALL THIS IS JUST NOT ME.

You know that I like to keep it positive, so here it comes, the light in all my gloom that has got me through the last few weeks and the focus of my blog this week... The wonderful group of people that I get to call friends. Things have changed really quickly since the summer, I've met so many new people and formed closed bonds with older friends. I guess what I've learnt is that everyone is fighting their own battles, but that doesn't mean you shouldn't share yours with them.

So in September I was thrown in with a whole new group of people when I started my teaching course, we all came from different walks of life and had all had different experience that led us to want to be part of the course. For me new groups can always be disconcerting, should I mention my NS? Then there's the worry that as soon as we become friends on facebook they will find this blog anyway. When I'd started Uni of Lincoln, things with my illness were very different, it didn't seem to impact on my life as much as it does now, it was far easier to keep things to myself until people asked. However, this time was different and I decided honesty was the best policy from the off. At the induction day I was swelled and had no ankles so it was pretty easy for people to see I wasn't 100%.

I do not think I will ever get over the response I've had from my new friends. I've had messages to check that I'm okay, offers to come to meetings with me so I don't feel overwhelmed and a friend who gives lifts as I'm not feeling very confident driving as I'm constantly so tired. My friends have been willing to listen to all my issues and have even took the time to read this blog. What has really stuck me is that it doesn't matter how long you've known someone, if they care you will soon know.

Equally, my friends have taught me that everybody is fighting their own battles and the ones who take the time to try and understand are often those who are dealing with the most. I was proud that a friend felt she could confide in our group and share something she had kept quiet,  but felt she could talk to us.  She is going to make the most fantastic teacher and is honestly one of the nicest people on this planet. Just goes to show no one has it easy. Another friend, who has been my best friend throughout uni, has been through the most awful few months. Despite of all this, she is there for me whenever I need her, always checks up on me and is always able to cheer me up. I have so much to thank all these people for, the more time you spend with strong people, the better they make you feel.

We all know that this journey is far from an easy one. However, if you are surrounded with people kind enough to help you things tend to feel easier.

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.

Being a Spoonie at Uni...

This is a pretty quick follow up blog for me, but a couple of weeks into my PCGE and the work load is already mad, so I thought I'd get another post in while I had a spare 5 minutes. This time I'm going to focus a little less on nephrotic syndrome and a bit more on life with a chronic illness or as I've now come to know it: being a spoonie (google it if you've not heard of it, it makes soooo much sense!) As I've just finished my university and some people starting their three year journey, I thought I'd take a little look at the things that helped get me through. So here are 6 easy little tips that might help those that are struggling with fighting illnesses as well as making a new start.

1) Make sure the university knows your specific situation: Don't be like me!!! Do not leave it until you are suffering a bad patch or a relapse to inform your tutors what you are going through. I was super lucky that timetabling helped me so that I could get home for my specialist appointments and even though my tutors told me I could have extensions on due dates if I needed it, I was lucky that I always managed to keep up. However, I can't stress enough if you need support or an extra week on you essay always ask, in my experience lecturers really do want to help.

2) Don't feel different: It's easy to get stuck in the mindset that you are gonna stick out because your struggling with your health, but honestly so many people are dealing with so many different things, you are not going to be the only one worrying. You have as much right to be at university as anyone; you might not be the last one standing 3am on student night, but that really isn't what it means to enjoy university. I often had to make the choice of whether I went for a drink or got enough sleep for my 9am (often sleep won.) Pick the times that suit you to go out and socialise, its your uni experience after all.

3) Share with your friends and housemates: Honestly, showing my flatmates my dipsticks and everyone dipping their pee is one of the most surreal and funny experiences of my time at uni. It worked though, I wasn't embarrassed to share anything with anyone after that. My uni friends have always been fab and a real support network (even if I was a bit of a flake and never made it to the end of nights out.) Sharing is caring and you are never going to be able to form close friendships without letting them know what you deal with on a day to day basis. If I was moody or upset my friends understood why, which meant I didn't shut them out when I felt bad. Plus you are going to spend three years living in each others pockets; make the most of getting to know each other.

4) Never push yourself too hard: for me this is one of the most important things and I'm still on a bit if a learning curve with it myself. ALWAYS give yourself me time! Yes, you might have an essay due but give yourself a plan so you can do it a bit at a time and not overload yourself. If you need a bath and to just watch friends on Netflix then set a night aside and come back to your work with fresh eyes. At the moment I'm still trying to find my balance with my PCGE and I can feel the effects of pushing myself, so look after yourself. Remember if you are at your worse, ask for help! Get that extra time or some help from your tutor, take the pressure off and let yourself feel better. You have a legitimate reason to ask for help and people will request extensions for far weirder things.

5)  It's okay to go home: I will tell you one thing, I'm homesick right now and I'm 22 and I am meant to be fully moved out. Do not beat yourself up on feeling low or wanting to go home for a roast dinner and a bit of TLC from your family.  Nearly everyone that moves to uni misses home and we are fighting all the time to stay well, so taking on thing great big move is always going to have more difficulty and take a bit of adjustment. For me I chose not to change specialist because I could get home for appointments and it gave me one less thing to worry about changing (I still do this.) You have to just do whatever suits you best.

6) Get plenty of sleep: My fave pastime after my treatment is sleeping! I am struggling to adjust to the early mornings that come with my placement. However, uni is different: how much you sleep is up to you. Lets face it, freshers week is the worse for lack of zzz's but, don't be afraid to say you need a night off! In first year I went to a friends to watch bake off on the Wednesday night, but it made me feel so much better for the rest of the week! I've turned down nights out because I knew I couldn't hack uni on 5 hours sleep. This is where the spoonie metaphor comes in (as a English geek I love a good metaphor) you can use your spoons on what you like, but remember your friends, if they are  well ,will have more spoons to use up
so don't hurt yourself trying to keep up (urban dictionary explain what I mean if I sound like a crazy lady!!!)

All thats left to say is my time at uni were the best 3 years of my life and Enjoy yourself! Equally if it's not for you do not be afraid to admit it, you can soon do something else. Make the most of whatever you choose to do and always put yourself first!

Biting off more than I can chew...

I am shattered! That is the only way to describe how Rituximab has left me feeling, I've managed to keep my sleep pattern pretty normal, but its been a struggle. I mean its 3 in the afternoon, I'm sat curled up on the sofa in my pj's, drinking tea, and feeling exhausted after only popping out at lunchtime. My blog today is focused on my never ending plight to live a normal life, pretending that NS doesn't effect me and how this is probably doing me more harm than good (hence the pjs).

So my life has been a mad rush for the last two weeks, last Wednesday I had my second Ritximab infusion which obviously left me feeling a bit low, but I haven't really had time to recoup.  On Sunday I moved back up to Lincoln with my boyfriend and have spent the last few days sorting our new house out and getting my confidence up driving around Lincoln. However, I've been pretty anxious about starting my teacher training next Monday. Don't get me wrong it is great to think that I'm taking the next steps towards where I want to be, but I just feel like the timings of everything are not fab. I know that starting the next part of my life was always going to be scary, I could just do without having to contend with a new treatment and no immune system when I'm about to go back into a full time course with placements where there is going to be a lot of stress and a lot of germs.

Due to my NS I had to have an occupational health check and I think it bought a lot of issues to the surface. The woman said I was fine to teach but really pressed on how the side effects of my meds might make my training harder especially during the winter or if I do have a relapse. Having someone sit in front of me and lay out all the potential issues that had been niggling me all summer really did make me worry that I'm about to get in over my head. I tell you what else is not helping, the amount of people telling me that PGCE year is the hardest year of your life or that 'you won't smile until Christmas' isn't filling me with much hope, I mean if its that hard when you're well how am I going to cope.

You know me, I want to give everything a go and not let my illness change my life, but this time I do wonder how long I can pretend NS isn't going to impact on me in some way. While I'm going to give it a bash and see what I can handle my health is always going to have to come first. The uni I'm training at has been so fab already with finding out my needs and how things might be different for me. So I'm hoping if the worst happens they would maybe let me go part time or be willing to help me to adapt.

While I never want to be negative or make it seem like NS should stop you in any way, it is important you put yourself first at all times. I really want to get through my training to help kids like the amazing children that fight NS through education when its a struggle. However, its okay to admit when I'm struggling because I'm still fighting too.

Time to try something new

So I'm trying to keep my blog up to date so you guys all know whats happening in my NS journey and I've had some big changes in the last week. So last Friday when I woke up I still thought Rituximab was a long way off as my specialist was trying to get me funding and had just gone off on his summer holidays. However, last week I got a phone call from his colleague telling me everything was all sorted for me to have the treatment and it would go ahead the following week!!

On Monday I had a call to tell me I was booked in to have my first Rituximab on Wednesday. I cannot explain how crazy this week has been, its a lot to get my head round but I guess its gave me less time to worry? I need to say a massive thank you to fellow Neph blogger Matthew, who had the same treatment a few weeks ago and has been there to answer all my questions and reassure me everything was going to go smoothly.

As I try to share everything on this blog today I thought I'd share my experience of Rituximab so if others are worried about it they have more idea of what to expect. Although I can't let you guys know how successful its been yet as its only been 2 days and I'm still sat in my pjs feeling sorry for myself, waiting to be told if I need a second dose when I see my specialist on Thursday.

Treatment day was a super long day, I arrived on the day ward at 11.30 and didn't leave until 5.30 (totally worth the time if it gets me off steroids) and I'm not gonna bore you with the tiny details but after the pre- meds that are meant to help stop your body having a reaction the infusion is started off super slow and sped up every half an hour, so my machine was beeping all the time to be sped up! the lovely nurse put my cannula in my arm so that I could move about and get to the loo easy, which was a god send considering the infusion took 5 hours.

I have to admit, it did have to be stopped for 15 mins as I had a funny feeling in my throat, this is really common apparently so the nurses just kept an eye on me. Although I'm quick admit it was probably nothing and just my anxiety making me feel something that isn't there because I was  waiting for something to happen.

However, all in all everything went well and the new treatment is underway. I'm excited and scared all at once to see what happens, lets hope the weaning off the rest of my meds can get underway once I've seen my specialist on Thursday. Big up to my amazing support team (Mum, Dad and Tyler) for making me smile all the way through.

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. 

It is okay to be in your pyjamas at 3pm sometimes...

I AM SO SORRY, it has been so long since I last wrote a blog but I have had the craziest few months (okay 5 months but who is counting right?) It has been madness this end, I'm under 2 weeks away from finishing my university and moving back home for the final time before me and boyfriend move up to Lincoln for good, life's moving on and I'm freaking out! Hoping everyone thats getting through school, exams and stress okay as well!

Anyway, I know I have always been an advocate of going out and getting what you want from life despite of nephrotic syndrome. Trust me I still think that this shouldn't stop us, but all I wanted to say today is that sometimes you've got to give yourself a break. I am beyond proud of myself for what i've achieved this year: being able to submit a 11,000 word dissertation and getting a 2.1 in it, securing a place on teacher training and completing university in general. All I'm saying is that i've been incredibly run down, burnt out and it's not exactly ideal.

I'm running on, but what I’m trying to say is that it's okay to be tired, it's okay to be run down, and it is 100% okay to be in your pyjamas at 7pm on a Saturday night eating Ben and Jerry's (as I am right now) once in a while, we all deserve the rest. Sometimes I need reminding that i'm not super girl, I can't charge around at full speed all the time and think that my body is going to cope with it.

It's been 5 years next month and sometimes I forget I'm ill, I know that can only be a good thing, but at the same time I can't feel guilty when I need a rest or can't keep up with everyone else. Trust me i've felt the guilt, having to go home rather than stay out with friends; I end up trying to explain to everyone why i'm tired because I always feel like I owe them that. My closest friends always tell me to stop being stupid and that I don't owe them an explanation.

Just look after yourself, if you need a night in and Netflix binge then go for it. Don't run yourself down to completely empty, i've been there and it's not fun. Yes you can do whatever you want with your life, even with NS but maybe have a night in before you try and conquer the world.

What is it to really be lonely?

So Im being a little bit political today, after Theresa May announced this morning that she was going to commit to producing a new government strategy to combat the loneliness that many feel around the country, it got me thinking.  Most of the press coverage on the subject finds its focus on the elderly and how growing old can leave people feeling very alone; which of course is a huge issue, but I started to think how it may effect the young, the ill and the family of sufferers in a very similar way.

I for one am not afraid to admit there has been many times since my diagnosis that I have felt very alone with everything I'm going through. One of the worst times for this was when due to my health I decided to put university off for a year and get myself feeling a bit better before I put that kind of pressure on myself. I couldn't ask my boyfriend and friends to stay with me so slowly they disburse around the country and most of the people I had in my life that understood what I was going through were not just round the corner anymore. I'm not going to lie there were many times that I was bitter, they were living the life I wanted but had put on hold because of my kidneys, of course I was happy for them all but at time I felt like the only person left at home.

Of course being able to come to uni, meeting my crazy group of friends and living with my boyfriend has meant the feeling alone because of my condition a lot less of an issue as they all try to understand whats going on. However, feeling alone isn't something that just disappears; I often don't feel 100% so tend to feel lonely as it hard to explain to people how things like pred wean and the anxiety it brings is making me feel. Often I also feel useless when friends want to go for food but I can only go at certain times because of my medication or if we go out on a night out, Im tired before anyones even ready to consider going home. Don't get me wrong everyone understands and they are fab, but I feel like a burden that always has to be considered.

I'm sure many of you that take the time to read this will feel similar especially those who spend more time in and out of hospitals or on dialysis. Its hard not to feel lonely when we are such a small group and not a lot of people understand what Nephrotic Syndrome is. Also a massive shoutout to any family members who are feeling the same way; who may of had to  give up work to look after their child or feel left out by their friends who just don't understand how much worry you have to go through on a daily basis. This is why find the support groups so amazing as we can all be their for each other.

Stress 'n' Pred

Nothing in life is never simple, if theres one thing I've learnt in the last four and a half years its how true that phrase is. Welcome to my current set up as a neph sufferer, drowning in an insane amount of reading, attempting to write a ten thousand word dissertation, applying for teacher training and to top it all off on the dreaded pred wean all at the same time! Cue tears, sleepless nights and stress by the bucket load. No I'm not writing this to moan, I wanted to highlight that university (especially third year) is kind of stressful while trying to combat Nephrotic Syndrome as well,  but its definitely not impossible! I mean i'm two years into my degree now and just so determined to do the best I possibly can despite this.

We all know that pred wean is not fun, but it does mean that I should be down to 10mg by Christmas so should be able to enjoy the festive period and write my essays in relative peace, if all goes to plan. but at the mo my head is spinning with all the stuff I'm trying to get done! I said it once and i'll say it again I refuse to let this all define me and I want to prove to the kids out there that we can still do all the cool things in life like go to uni and have independence despite of the path that our kidneys have laid out for us!

Not the longest blog i've ever written today, but I just wanted to talk quickly about the influences my experiences of this disease and you wonderful people have had on me. After a lot of being indecisive i've finally decided to apply for teacher training once I get my degree this year. Like most of the experiences i've read about i didn't get any support from my 6th form at the time of diagnosis (they gave me unauthorised absences the day after my dad told them I had been hospitalised)  and there was only one member of staff that really helped me. Due to this lack of support I've decided a career in teaching would allow me to positively impact on young peoples lives, especially those who may need a little more support. I'm pretty passionate about using creativity as an outlet for issues (Hello just look at this blog.)

I'm scared because this feels like a huge decision I'm making with a pred addled brain and my fears about where nephrotic syndrome will leave me in the future are constantly in the back of my head. However, I have to go for things in the here and now and I know deep down I cant see myself doing anything else.

You've got this

I just decided to update my Facebook page to get involved with raising awareness of the struggle of mental health problems, so here I am again being honest as ever and trying to show how living with something like Nephrotic Syndrome is really strongly linked (especially for me) with mental health struggles. I'd like to start by putting it on the record that ITS OKAY NOT TO BE OKAY and I can't stress that strongly enough, we are fighting an illness that effects our day to day life in ways that I didn't even know were possible before my diagnosis and just adjusting to these experiences and the side effects of the treatment is enough to mess with your head.

I've been more than open about my struggles in the past and today seemed like the day to dig a little deeper and be brave, because I'm pretty sure that a lot of us are all in the same boat. Right, honesty, the last few weeks ploughing through relapse number 10 has really not been the easiest. Of course my body has not been in a good place (that goes without saying, hello crazy protein levels and no Albumin) but my headspace has not been very clear at all. The weight gain of this relapse hit my self confidence like a tonne of bricks, I found it really hard to leave the house and face people because I didn't feel like me and people are far from understanding when it comes to turning up back at uni looking like you've ate all the pies over the summer.

Alongside this, whether it was to do with the stress of getting back into University life and the never-ending work load or it could of been the side effect of a super prolonged period on 40mg of steroids, my anxiety has been flaring up ever since. I can't pin point a trigger as such, but its made day to day living hard, my concentration is seriously lacking as is my commitment to work (not handy when you've got 2 novels to read a week and a diss to start.) I also don't know about anyone else but i'm liable to burst into tears at any random moment, especially over silly things like the dogs trust advert!

However bad this gets, I have people to talk too and share my issues with, its such an over used phrase but a problem shared really is a problem halved and by not bottling up your feeling you are doing yourself so many favours in clearing your own headspace to work through whats going on. Also, look after yourself, If your having a bad day then reward yourself for getting though the little things, you did your home work or made tea? you've 100% got this. I tend to notice my ability to cope really does change depending on my medications, but if it really does get too much talk to your doctor - they are here to help and know we go through a hell of a lot of stress and anxiety.

But as long as you keep fighting on and doing the best you can for yourself then thats all you can do. I know we tend to just put the physical issues of NS at the fore, but we need to look after our mental health too, how can your body fight this is your mind is struggling to cope. Love yourself and do the best you can, like I said you've got this, just keep looking after yourself.

But you can call me Moon face

Sorry I've been AWOL for a month or so, there never seems a lot of point writing until I can find something mildly entertaining and relatable to talk about, I guess this is less of a serious one but its something that still bothers me a lot even after 4 years of steroids- the dreaded moon face.

I read on one of the support pages recently some comments about how quickly once on a lowered dose your face can decrease back to a normal size, well i'm guessing that it varies from person to person (I'm not an expert!) but my face size has gone up and down with my dose of pred like a yo yo, with it getting to its biggest when I spent prolonged periods on really high doses. But honestly as a vain teen/ young person (21 is a weird age!) I've had serious hate for my appearance just because of steroids.

It took looking back over various old photo albums to bring back the emotions of how down I got at the time just because of something as little as a round scone face, but honestly it has had a big impact on my self esteem, I constantly think I have a round face again despite knowing I'm pretty much back to normal on 10mg of steroids and every time I have to up my dose I feel like I'm constantly looking for changes and the scone face return!

I know vanity is really the last thing you expect me to write about, I mean steroids are keeping me well so having a face that shines like the moon is a small price to pay. But, actually when your feeling low because of being ill, things like this do get to you especially as a teenagers with raging hormones as well as a body full of meds.

Thanks to the wonders of makeup I spend a lot of my time contouring the heck out of my face to make myself feel better and don't worry guys I read in one of those glossy rag magazines that the 'round face is back in fashion' spoken like people actually have a choice in the shape of their face?? But anyway maybe our time is coming!

On that note as much as I might feel slightly exposed I'm going to add some pictures to show how much steroids have varied my face, as my friend once said I'm not 'destined to be eternal moonchild'!

(the photos move from first diagnosis, to a prelonged period on high, when I hated how I looked which was hard to find pics of because i mostly covered my face with my hand! To more recent times when I've spent longer on lower doses!)

keep fighting and smiling x

You are important

Coming up with new topics to write about can always be a little difficult, hence why I've not been to vocal lately, it seems pointless to bore you with the same old stuff so I've been wracking my brain for something helpful to write about. The importance of self care came to me the other day when I was feeling pretty poop and although it probably seems like a bit of a general topic that doesn't just apply to NS sufferers I actually felt that learning to not give yourself a hard time when your living through all these problems is one of the harder things to learn.

I have always been the worst for beating myself up and giving myself a hard time when things don't exactly go the way I plan and I'm not going to lie this time back on steroids has been no different. After loosing some weight a couple of summers ago I am always determined not to put it back on because of steroid hunger, so I try and fight it as much as humanly possible which is difficult when you feel like you could eat a small village! Of course like everyone out there sometimes I've caved to it and stuffed my face. I've had to teach myself that that is okay, I cant feel guilt when its out of my control how hungry the steroids make me. I've had to learn that exercise is my best friend as then i can eat what I like and not want to cry into my dinner!

Okay so that wasn't a really serious issue, but this next one is. NEVER BEAT YOURSELF UP FOR HAVING A NEGATIVE DAY. Yes we all have to fight this and every single person I've talked to and come across is doing a fab job at it, but at the same time you don't have to be positive 24/7. It can be totally overwhelming at times and of course the bad days are going to happen its how you get through them that counts. I'm not ashamed to admit I can get really down about all this and have cried a lot even over the littlest aspects of what we go through.

NS things I've cried over in the last 4 years...
-thinking I looked like an egg
-my hair coming out
-worrying about the future
- my stretch marks
- taking my meds
- fertility worries
- steroids in general
- a plus one on a dipstick
- not feeling like myself because of tablets
- feeling fat and not wanting to go for a meal
- not being able to get my jeans on because I was swelled up

So there, I'm putting it all out there. I've cried and worried over all sorts, that doesn't mean I should be ashamed of myself, its healthy to let out all the emotions that dealing with this new way of life creates. I knew being positive can make it seem so much easier but hey if you need to get angry at NS  or if you need to put your PJ's on at 5 o'clock and curl up on the sofa then go for it. We are all doing the best we can.

4 years and counting

So today marks 4 years since I was finally rushed to hospital and diagnosed with nephrotic syndrome after weeks and weeks of constant swelling, blood tests and trips to the doctors. I clearly remember feeling so full of relief when I actually knew what was happening to me and in all honesty at the time ending up in hospital meant getting better, even if it was one of the scariest things I've ever been through.

Got to say I did think that everything would be sorted once I walked out of that hospital after a long week of drips and drugs, I really didn't know the nature of NS at that point and thought I was fixed, the swelling had gone and for all I knew then the steroids were not a long term thing, Ha, here we are 4 years later still on 40mg, never fab but battling through as per.

I know compared to a lot of sufferers my journey is still relatively new, 4 years is a pretty short time compared to some of you that have lived with this for most of your life, but I'm not going to sit here and lie it really has turned my life upside down and its taken me a long time to make my peace with nephrotic syndrome just becoming part of my everyday life, not to mention learning to live with the crazy that is caused by long term steroid reliance.

I'm not going to be sad today I want to celebrate that I've made it this far and that I've finally learnt to love my body after everything its been through.  Yes I'm always going to have scars and yes I'm always going to be hungry (My whole life is fighting steroid hunger now) but that doesn't  mean I can't love life like I did before, if anything I'm thankful for the fact I can still be at uni and attempt to carry on pretty much normally.

To be perfectly honest i've had to stop beating myself up on the bad days, because in four years I'm allowed to get angry that life isn't working out how I might of expected when I was leaving high school and all this was way off in the future. Its going to get me down but i'm honestly doing the best I can, theres always going to be challenges but I'll continue to try and smile and write blogs about the ridiculous situations I find myself in.

I owe the biggest thank you's to my family, for the countless emotional meltdowns they've defused, the long hours we've all spent in hospital waiting rooms when we could of been anywhere else and for the constant understanding that I will eat the entire content of the fridge if I'm not restrained!! Another massive thank you to my boyfriend, who in the last four years has put up with far more than he signed up for and even agreed to move in with me despite the countless roid rage incidents he's been on the receiving end of and the constant waving of dipsticks under his nose. Finally, to Norfolk and Norwich Hospital and their renal team (Especially Doctor Andrews, if you ever read this) who have gone above and beyond to allow me to be at Uni and continue treatment, I honestly cannot praise and thank them enough!

Here's to the next four years of the fight!!!!

Taking the good with the bad

As I think I must of written this on this blog one million times before, but the nephrotic journey is a total rollercoaster in terms of emotions as well as just day to day life in general. This week for me has just proved it once again, just when you think things might be going your way back comes that little green square to throw your life into chaos once again.

I'm now home from uni for the the summer and last week after getting all my essays and work back  I know I have passed second year with a 2.1, which has given me a massive boost considering I had a relapse totally slap bang in the middle of deadline season and of course there has been points where I didn't think i'd even get to uni in the first place. (Big up to my Uni pals for getting me through the sticky times!) So its safe to say at the end of last week I was feeling really positive and everything felt back on track, dare I say it I felt pretty normal. Cue nephrotic syndrome to put an end to that.

It had been a couple of days of trace dips but i'd just shrugged them off as nothing, it was easy to put it down to stress and the busy schedule of returning home and stuff. Not so easy to pretend a plus 2 is nothing though is it! See I was convinced I wouldn't relapse for a while after February's return as I had been on antihistamine and convinced this was the underlying issue, to be totally honest I think it still is this is the third relapse i've had at this time of year, so its got to be something! I Just don't think that over the counter aids had been enough to combat my reaction to the pollen.

After 3 days of Plus 2 I contacted my specialist and as he's away was advised to go and get blood tests so we can catch the relapse quick- I know a relapse is plus 3 for 3 days really but when I start seeing the signs my  doctor tries to diagnose it ASAP to avoid swelling and stuff especially as I don't think my scars on my legs could take many more swelling incidents.

So bloods were done yesterday and now we a playing the waiting game! I know that relapses are awful and I'm not saying I'm okay with all this (I've cried enough tears and been really angry!) But what else can I do need to just get on with it and get through it, it's not stopped me this far so I'm not going to let it start getting in my way now. I feel like I need to keep up to date on here as you people are kind enough to take the time to read this, so I can at least take the time to be honest.

Sending so many yellow thoughts to everyone! Hope all neph kids are finding their exams okay, remember you are unstoppable!

my body, my rules..

So I guess this is my blog entry to go along with the photos of my scars and stretch marks I posted on Facebook a couple of weeks ago as part of the loose women campaign #mybodymystory, I chose to take part in this because I feel our bodies and the effect this illness has on them, means we have a story to tell thats not often seen, as its an invisible illness in many ways sometimes my scars are the only thing that physically reveal that I'm fighting anything at all. Also me being me, felt that younger people who live with marks, scars and abnormalities deserve as much of a voice as the mothers and other older women that the shows campaign was giving most of its coverage to, of course all the people that shared were fabulous, just we are too!

In the last few years having other NS issues to worry about  has made my scars less of a major issue to me. Like I always say I'm pretty proud of them, I guess my feelings on celebrating the female form and what we are capable of has meant I've had to make my peace with my body, but I have to say I feel a lot better for it. Over the last few years I've had my battles with my body image whether its been the weight gain of steroids, the chubby moon face, the hair loss and bruising I've been pretty low, but once I decided that my body was mine and if I wanted to feel good it had to be for myself and not anyone else, By not appealing to unrealistic beauty standards that were really damaging to me at that point.

Might have a little chub and a load of scars
but trying to be proud of it all

I know now because of what I've been through my body is never gonna look like the models in cosmo, but hey I think thats pretty great, we are all fighting our own battles and we are all going to look different because of that!


I have to say a huge thank you to the wonderful reactions I got to sharing my photos, makes me realise its worth sharing things that I normally wouldn't if its going to raise awareness. All the love for my scars makes me more confident than ever and I hope other people realise they should be proud of they bodies.  I'm embracing mine, scars and all!

Sometimes I wish I had a Crystal Ball..

It's not going to be one of my joke filled positivity blogs today, i've got something that I need to get off my chest and I'm sure it bothers others to, so I thought in the spirit of being open I would share whats been on my mind...My massive fear of the future and what is coming  for me and my kidneys.

Don't get me wrong i've probably been pretty lucky (or as lucky as an NS sufferer can be!) in the fact that I'm near enough four years into my journey and I still at this moment in time have good kidney function. It was just sitting with my specialist on Tuesday talking about the future made me get a bit of a panic on about whats to come, like he said its not a matter of whats going to happen to me in the next year, but more the next 5. Look, I know thats a good thing and compared to some sufferers I have a relativity normal life and get to go to uni and all that, but it just scares me in 5 years i'll be 26- so what does that mean for me in respects to kids and all those other good things?

I'm now finishing my second year at uni so i guess its part and parcel to be having a crisis about the future and what I want to do when I finish uni, I just feel like its so much harder to even consider when I don't know what my health will be doing. When your relapsing it can be hard enough day to day, let alone trying to decide what I want to do with my life. My boyfriend won't mind me sharing that I've already made him promise to marry me before I have to have a kidney transplant, if it comes to that (he thinks I'm messing about but we will see!)

Think what I'm trying express, not in the most eloquent way is the impossible nature of this disease, that just really gets me down! Whether it's knowing you have loads of uni work while fighting through a Pred Wean or Planning a holiday and praying not to see a relapse, it always happens at the most inconvenient times. Promise i'll try and be more positive next blog, sending everyone yellow thoughts!

Growing up and getting used to it..

Okay so maybe the title doesn't make this out to sound like the most positive blog I've ever written but honestly it's more about embracing what life has to throw at you rather than hoping it'll go away at any time soon.

Last Saturday I turned 21 and despite all my best efforts and lets face it slight obsession with being well for it, as many of my followers will know I relapsed only a couple of weeks before BUT in spite of being back up on pred which we all know is a total joy, I honestly had the time of my life. So I guess my point is whatever happens embrace it, enjoy life because lets be honest it never is what you expect.

I have to admit, I'd been on a knife edge about my 21st, the week before; we had a big house party planned at uni and I was convinced that because of the anxiety that my upped medication was forcing back on to me I wasn't going to be able to enjoy myself (especially remembering how het up I had been on my 18th.) I couldn't have been more wrong, due to totally understanding friends, I could not have had a better night- honestly I owe them so much for riding the neph rollercoaster with me!

Things really did stay on a positive in the week between my party

 and my birthday, The morning I left for Centre Parc's with my wonderful parents and boyfriend
i got my first yellow dip of this relapse!! negative protein couldn't of come at a better time and I was super excited. Yellow squares really do mean a lot to neph patients.

The wonderful thing about Centre Parc's is that you could be a million miles from anywhere and can forget about everything and I truly did. I have to admit on my birthday I don't think kidneys, the future and medication once and thats a break I haven't had for 3 years.

So yes our kidneys always flare up at the worst times and I know its not even easy, but please give yourself a break and try and enjoy everything you possible can, because we really do deserve some time off and we are allowed to enjoy ourselves even if NS tries to ruin it!