So I haven’t updated in a while. Things have been pretty crazy.

Since I last posted, my lupus officially flared up. I got an infection and spent a week at uni accomodation away from my family in the worst pain I’ve ever experienced. I managed to fight through it till the day of my first exam but it became too much and after calling my consultant I called a taxi and made the 1 hour journey back home and into hospital.

I spent a few days there just so they could run some tests and control my pain. They still don’t know what caused the pain, I just hope it doesn’t come back anytime soon. We decided a new course of treatment combining Mycophenolate (cellcept) with Tacrolimus. This is a relatively new method of treating SLE but it seems to be working which is what matters.

Anyway, I missed all my exams (for the second year running) and will have to sit them in August instead. Fingers crossed! Lupus, you and your bad timing are becoming a big inconvenience!

Been to see my doctor and he says i’m showing early but definite signs of relapse. My medications have increased again and he says if they don’t improve there’s a high chance they’re either putting me on cyclophosphamide or a new drug i can’t remember the name of.. 

.. once again, this is happening at exam time with the chance of me not being able to sit any exams..

Lupus, you always seem to present yourself at the most inconvenient times. For a minute, you actually made me feel like i was beating you. 

Just when I thought things were looking up I’ve woken up with the worst joint pain I’ve ever had. My wrists, elbows, knees, feet, you name it, it hurts.

This is completely different to the joint pain I had when I was initially diagnosed. I can barely even move.

Exams start in 2 weeks. I don’t need this right now.

Anyone with Lupus or know about it..

.. Does it effect your speech or memory?

I’ve recently started finding it difficult stringing sentences together. It doesn’t happen often, but when it does it’s like i know what i want to say, but the words just come out all jumbled or i’ll get half way through a sentence and my mind will go blank.

.. i’m also getting really bad memory. I’ll think of something one second, and then the next i’ve completely forgotten it!!

I’m starting to get really worried. Being at uni, my memory and speech is pretty important and there have already been times in class that i’ve tried making a point and struggled to get the words out of my mouth. I’ve never had issues like this before..

My nephrotic syndrome is in remission!!

I feel like very soon I’m going to lose control and tell the people I live with exactly what having Lupus is like. I’m sick and tired of being mocked for the decisions I have to make because of this illness..

Laughing it off just doesn’t cut it anymore.

Went into Uni only to get there and find out my seminar was cancelled..

.. Classmates don’t realise I’m more pissed off than everyone else because the process of getting up, ready and into uni wasted some of my already limited energy..

Joints have started hurting and freezing up again. Got an assignment to hand in next week. No pressure.

June 16 2011 was the day I was diagnosed with SLE with Nephrotic Syndrome. But I guess it all began around January of that year…

It all started with simple joint pains. Starting with tingling sensations increasing to a point where I was unable to hold a pen. Being the last year of my A-levels, this was a problem. I saw a GP and was put on painkillers, and sent for nerve conduction studies. This was inconclusive and eventually the pain went and I thought nothing of it ..

In June, I was going to college one day and suddenly I felt really dizzy and my vision became blurred. My legs turned to jelly and I found myself on the floor. I went to A&E where they ran blood tests and found dangerously high potassium levels and i was admitted to hospital. Cut a long story short, Lots of abnormal blood tests, a kidney biopsy and 2 weeks later I got the diagnosis of SLE.

This was a one of the scariest times of my life. It was the first time I had ever stayed at hospital, and I ended up spending my 18th birthday there and missed all my A- Level exams. Not knowing if I would get into uni and the idea of being stuck with a chronic illness made me sad and angry all at once.

Fast forward to now, I’m enjoying my first year studying psychology at uni. Although Lupus affects my life a lot, I’ve still done the things I would’ve done before. In a positive way, Lupus has made me view the way I live my life differently. And although I have my bad days, i’m not about to give up.