Hi everyone. The second part of this month's blog has been written by Jade. She has shared her experiences of studying whilst living with lupus. Thank you so much Jade for taking the time to write your story for us.
My name is Jade. I was born in Cambridge in 1989 and lived in a village called Impington most of my life. I started having various symptoms of lupus (SLE) from the age of around 15. Severe chest pains, dizziness, fainting, fatigue, rashes, joint pains and headaches. I started out going to my GP who monitored me for a while and said I was just 'growing up'. Over the years my symptoms got worse and I was referred to a rhuematologist who undertook various tests including; echo-cardiograms, lung function tests, chest x-rays, MRIs, blood tests - the works!
I left home at age 18 to go to DeMontfort University in Leicester.
Keeping up with my new friends at university was a challenge from day one. Balancing studying and feeling this way (with not knowing what was happening) was tricky. A lot of my friends would go out every night during the first few months and, of course, I went along too. There were times when I passed-out in clubs (not through drinking but through fatigue) and I would get dirty looks for 'being too drunk', when actually it had nothing to do with it, as I don't really drink. Fortunately I met some really great people who were always there to help me out when I needed looking after, but it was hard for them, as at that point there wasn't anything 'wrong with me'.
It was around Feb 2008 when I received the news from my rhuematologist that I had lupus (SLE) and it hit me like a tonne of bricks. I had so many questions. “Am I going to die?” was my first thought. It was talked through carefully what this meant and I began new drugs to try and control it straight away.
It was then that my partner Sam and I were starting a new relationship and I was very scared at what might happen to us when he found out I was ill. Fortunately, he is one of the kindest and most supportive people I have ever met and he is still supporting me six-and-a-half years later.
Trialling numerous different drugs has been a roller-coaster, as there are so many different things that might work for one person and not for another. The first medication I took was terrible; I was throwing up all the time, I felt sick and it didn't really help my symptoms at all. I was on this for six months to let it settle into my body, but it didn't. All of this was happening whilst trying to study for my BSc, which was difficult. I didn't want to tell my tutors or lecturers there was anything wrong as I didn't want to be seen as 'different' or 'making excuses' - this was fine for the first few years.
I joined the university cheer-leading team to try and keep up with my friends and have a good time and a bit of exercise to keep me going. There were a lot of occasions where I had to sit out because I thought I would pass out and be a danger to someone I was supposed to be supporting. Most people were supportive and just let me get on with it but there were also people who didn't really understand why I kept sitting out and not joining in. It can make it hard to be part of a team.
During university I was admitted to hospital twice due to my lupus, with overnight stays, drips, and a lot of monitoring. It was at this point where I informed my tutors and lecturers what was happening as I didn't want to miss out on study and deadlines, which nearly happened. Fortunately my friends brought my lecture notes around for me and my deadlines were extended for some important coursework so I was able to take some time off to rest and get all my work submitted.
As I got into third year I was still trialling new drugs every six months and the current ones were giving me the worst migraines. I found it extremely difficult to concentrate on lectures and classes at this point, however I didn't want to give up so close to the end. I found it best to go to the lectures, take a few notes and then get a copy of all the presentations so I could study them in the comfort of my own home, in my own time, where I could rest and sleep as necessary.
The girls I lived with throughout university (who are still my best friends today), were the shoulders I cried on, legs I stood on and hands I held during all of this and I don't think I could have done it without them or my wonderful boyfriend helping me along the way.
It came to exams and to be honest, I just wanted to get it over and done with so I could rest for a while, before thinking what an earth I was going to do about working in the real world. During the exam period I studied extremely hard, day and night. My symptoms heightened because I wasn't sleeping or eating properly and it was then that I was given the news that lupus had started to affect my kidney function - I was devastated. I did a lot of reading on the internet (which is never a good idea, as it can just scare you without the real facts in place), but I started taking the medication appropriate for this and got on with it anyway. Trying to get through final year exams with that in the back of your mind is not for the faint hearted, but I did it.
I started a new job when I left university with a 1st Class Hons (BSc) and now 4 years later I am running my own (from home) business. I got through it with the support and love of my partner, friends, family and the extra help the university gave to me.
I am OK with my lupus now. I am taking some pretty heavy drugs but actually they are working and I am doing OK. My parents brought me up to be strong minded, happy, and grateful for what I have. Although I have lupus, I have a whole lot more than lupus too.
The LUPUS UK Blog will return next month with more people sharing their experiences of studying whilst living with lupus.
THE LUPUS FITNESS DVD mentioned in a blog from Twist
Mycophenolate Mofetil experience with lupus nephritis.
Class 4 Lupus Nephritis - Similar experiences anyone?
