Saturday 29 September 2018

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!


Friday 7 September 2018

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.