Diana's Story

What were the steps leading up to your diagnosis?

I had pain in my lower back for years before I was diagnosed. I complained about it to my GP, but she just brushed it off. She put it down to my working out, thinking it was just muscle pain.

Sure enough, ultrasound scans showed two beautiful kidneys, so there was nothing to worry about, right? Wrong!

Back in 2013, when I was revising for my law degree summer exams I noticed that my joints were stiff every morning. I have lived independently since the age of 18 and my bed was not the greatest, so I decided that it was the quality of my mattress or pillows. I went and bought some memory foam pillows, but to my surprise it did not solve the problem.

After the first symptoms started in April I pretty much ignored them, as I was too busy with my university work.

The summer of 2013 was hot here in UK, and I had just signed an eight-week contract for my summer placement to support myself over the holiday period, but one thing was bothering me... It was the horrible joint pain.

Now my joints started swelling. I remember my first shift as a waitress, sweating and in massive pain as I ran errands in a busy pub/night club, collecting huge quantities of glasses.

The next morning came the fever. But I HAD to work and I didn’t think I had something serious. So my second – and last – shift at work I was cleaning the busy toilets and a massive pub, with all of my joints in agony and fever as high as 39 degrees.

I thought it was just a flu, cold or some other mild condition that would disappear after I took some paracetamol. Oh my, how I was wrong...

I decided to visit my GP (a different one, as I had moved). I could barely walk by the time I reached her office, as the little joints on my feet and big joints of my knees were all red, hot and swollen.

The GP looked at me, and when she saw the red rash on my face she asked whether I’d had it before. I always used to have mild redness on my cheeks after I spent some time in the sun, so I said yes.

She looked very worried, and I remember her asking me, "Do you know what lupus is?” Obviously I did not know what on earth it was, and I Googled it straight away after the appointment. I was shocked.

"I can’t have it, she is definitely wrong," was pounding in my head. Although I lived five minutes from my GP, I took the bus home because I was in too much pain to walk.

I spent two weeks in my bed. I could not eat, as due to the high fever I would throw up straight away. I could not even walk to the bathroom.

I remember the agony... Sharp pain, as if I was walking on top of cactus. I was sleeping 24/7. I had no energy to even speak. I was all alone in my flat, gradually dying from something I thought was just a flu. Paracetamol would knock off my fever for an hour or two so I could sleep, but then I would have to take more, and more, and more... Pain killers did not work.

Worried because I did not pick up my phone, my mother came to my flat and I could not even answer the door.

I remember my mum crying by the hospital bed and her friend crying too. I was in and out of consciousness and everything seemed just like a bad dream. I still could not believe it.

I remember a nurse coming to check on me, and her holding back tears because her daughter was my age and seeing someone of my age that sick broke her heart.

I spent two weeks in the intensive care unit. I could not feed myself, as I couldn’t even hold a glass or even a spoon. I still used a walker to go to the bathroom, as I was too proud to wear nappies. The longest shower I had, it took two hours just to wash myself. I was on steroids, antibiotics, painkillers.

Then I was transferred to another hospital to have a kidney biopsy. Stage 5 lupus nephritis was my initial diagnosis. By the time I was discharged, I had lost my work placement, my boyfriend who I had been with for over four years dumped me and I was in massive debt with my bills.

What lifestyle changes have you needed to make?

I had to take a study leave, although it was very hard for me to realize that I was in fact very ill. I still could not realize the extent of damage lupus had done – I did not want to realize it.
I was taking 54 tablets daily just to keep me breathing. I could not walk, as my joints were still in agony and my muscles started deteriorating due to the steroids.

Everything changed for me. I was a normal 19 year old who used to go out, study work, and live a happy life. And now I was stuck at home 24/7 with no means of survival.

I had to fight for benefits for over five months. Five long months with no money to even buy food. I was living off food bank and church donations. Even local police gave me tesco vouchers as I was dying of starvation.

Who has been there for you? How?

When my boyfriend left me, I just felt that no one needs or wants me. All of my friends suddenly disappeared. I was all alone. Then my mother and step-father decided that they should move in with me until I get better. Lupus, although very cruel, brought our family together.

My amazing support worker went out of her way to help me. She even drove me to the hospital appointments, although she is not supposed to do that.

Then the ambulance came. They had to drag me down the stairs in a wheelchair because I could not move a muscle. I was in such an agony I did not care anymore. They put me into the intensive care unit, because I was extremely dehydrated; I hadn’t drunk any water for over two days.

And so my journey of being an official lupie started.

What accomplishment are you proud of?

In May 2014 I had a second, even bigger flare-up, which confirmed that CellCept did not help in my case. My lungs, heart and kidneys were all giving up.

I was extremely anemic and had to have blood transfusions on numerous occasions. It was decided by my consultants that I should get a course of chemotherapy or I would die.

Since I had my chemotherapy I am back in university. At the moment I am revising for my second year exams. I have worked very hard to regain mobility and now can enjoy my life again. I met a lot of good people who became my true friends.

This year I decided to stand in my university elections to represent disabled students and their rights. I was elected. After that I was elected to represent Welsh students on national and international level.

And now I am taking driving lessons too, as I always wanted to drive a car because it gives us that extra bit of freedom. I am also volunteering for one of the law firms to help those in difficult circumstances.

After my diagnosis I never thought I would be able to enjoy my life to the full. Although I need to mind my limits and still take tons of medication, I value life so much more now. I now understand the importance of helping others in great need.

What's your advice to someone else living with Lupus?

My advice would be to never give up, and be optimistic. Although you probably have heard this million times and might wonder how on Earth can I be optimistic when I am diagnosed with such a cruel condition, my answer is simple – it will help you to overcome your daily struggles.

I always used to just laugh it off and take a somewhat sarcastic approach even to unpleasant treatments. But please, do not suffer in silence. Learn from my mistakes of keeping my condition behind the closed doors to the point that I nearly died.

There are people out there who are willing to help, you just need to ask.