A British Chinese girl’s journey with lupus

My name is Ruby, and I would like to share with you my lupus story. I decided to start a blog about my journey with lupus. I hope to spread awareness of this condition and help those who are struggling with lupus, especially for those who are young, afraid and need a friend or a sister to turn to. I named my blog’s title as Lupus Positivity because I wanted to let everyone know that people with lupus need positivity in their lives to help stay strong, and this is what my blog is designed to do.

Prior to my diagnosis, my immune system was amazing. Any fevers, flus or colds I contracted would be gone by the next day. I barely took any sick days off school, was always full of energy and positivity, I loved sports (and still do) entering many competitions in badminton, rock climbing, athletics etc. Cuts and bruises would heal in no time, medication was unknown to me…I felt like superwoman! All of this was perhaps a little too good to be true.

A chronic autoimmune condition

Systematic Lupus Erythematous (SLE) is a chronic autoimmune condition, whereby the body’s defence mechanism attacks and inflames the healthy cells, tissues and organs. Currently there is no cure, only medication to suppress the immune system, stopping it from tearing ourselves apart from the inside. Symptoms can range from mild to life-threatening, affecting the skin, joints and internal organs. The cause of lupus is still unknown, though there are a few suggestions that may make people more susceptible to the condition. I am indeed of Asian origin, a woman and of childbearing age, thus making me at the centre of those who are prone to this condition. I believe what “triggered” my lupus was stress, the stress of exams together with the recent loss of a very close uncle of mine, though I cannot confirm if this is true.

I was diagnosed almost 5 years ago. It took a couple of months, I was in and out of my GP’s surgery, every week she would send me home with paracetamol telling me it was nothing to worry about. My fingers were swollen, I had a bright pink “butterfly” rash on my cheeks, I could barley brush my own teeth or open the car door, something was so obviously wrong. No one believed the pain I was in, the hurt I was feeling until I couldn’t bear it anymore. I felt like no one understood, or no one would believe me, which in turn caused me to doubt myself. Was I overreacting? Was there any need for the severity of my complaints? It wasn’t until my dad really pushed my GP to do a blood test that they realised there was something majorly wrong. I was officially diagnosed in March 2011, at the age of 16, during my first year of A-levels. This was the turning point of what would be my life, for the rest of my life. You see, lupus isn’t just something you have, it becomes a part of you that will not go away, the main thing is not to let it define you.

I was in school, specifically in art class, when my mum called to tell me I had been asked to come into hospital and to pack my things ready for a couple nights stay. My feelings at the time were neutral, chilled, it didn’t really hit me yet. I got to hospital, had my own bed with a TV and the doctor comes over and tells us that I have Systematic Lupus Erythematous (SLE). My feelings after that? I don’t think I had much of a reaction still, I was just like… “Ok”, I think mainly because I didn’t understand it or even know what it was. The next few months was a blur, consisting of many hospital visits, blood tests, drips, and a lot a lot of medication, one mainly being a type of steroid known as Prednisone. This made my face incredibly big and round, giving me what they call the moon face.

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Symptoms

My symptoms at the beginning were: extreme fatigue, rheumatoid arthritis, abdominal pain, malar rash, low concentration levels. This was particularly hard to deal with as I was still in school, trying to achieve the best I could despite being constantly dragged down by these factors. My fatigue and low concentration affected my performance in class, joint pain restricted my writing ability and my rash and moon face made me extremely self conscious, especially when going out in public.

Since then, I have gained a few more symptoms and had only one “flare” so far (luckily).

Flare 1: I was diagnosed with having pericarditis in February 2015, right in the middle of my second year at university. I was unable to breath without pain, climb stairs without getting breathless or even walk a short distance. Lying down was a definite no, meaning that I had to sleep in an up right position. Painkillers, a lot of rest along with loving family & friends got me through this unbelievable pain that I had in my chest and in my heart which lasted around 3 weeks.

Symptom 1: Reynolds phenomena, this is a condition whereby my fingers and toes turn white and numb due to the cold weather, stress or anxiety. My feelings towards this? I hate it, words cannot express how annoying and frustrating it is. For me, it is triggered all year round, more so in the winter, and when it happens I am unable to feel for things in my bag, press the unlock button of my car, type on my phone…I basically can’t feel what I’m touching. I wear gloves most the time I’m outside, though it doesn’t help too much.

Symptom 2: Stress fracture, this is due to the dosage and length of time I have been taking steroids. Steroids weaken your bones over time. Most recently I have not been able to walk without pain as it has affected my foot. It has not been properly diagnosed yet as I only went for an x-ray yesterday, however I have been in pain walking for the past 3 weeks.

Though my symptoms are not very severe, being that my condition is only a mild case of what can happen to someone with lupus, it still affects my life a lot. For that I am extremely grateful and forever empathise for those whose condition is so much more extreme than mine. If mine is so bad, I can only imagine what it’s like for others.

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So this is me now guys, I would say I’m quite a chilled, happy-go-lucky person and live life as it comes. Having lupus has never really gotten me down or changed my perspectives in life in a negative way. Of course I’ve had my moments where I think – why me? But I guess there is nothing I can do about that, I just carry on living. I believe everything happens for a reason, staying positive and not using lupus as an excuse is key to moving on and making you a stronger person. I don’t go around moping about my condition or bring it to surface when someone else is complaining about something mild like a cold, because, what’s the point? Negativity will get you no where, it will only bring you and the people around you down. In fact, not many people even know about my lupus even though it has been a part of my life for almost 5 years.

Living with Lupus has its difficulties on a day-to-day basis that people do not realise, this is what I would like to spread awareness about. It is often overlooked and unknown to many the true feelings of those with SLE. I may look healthy and seem upbeat & positive on the outside, however 9 times out of 10 I am actually in physical pain inside. When I go out to eat with friends, even simply picking up the glass to take a drink may be painful for me, though no one knows this. I don’t think I even remember what it’s like to be completely pain-free, it’s just so normal to me now – like I said, it has become a part of me. Rheumatoid arthritis and fatigue are the main problems I battle with every day, most days I wake up stiff, it’s a challenge to even get out of bed sometimes. Walking hurts my knees, grasping objects hurt my fingers, sports hurt my joints, work exhausts me, Reynolds restricts my actions, but I carry on living life how I want – within reason & with extra caution of course.

The key to living with lupus is:

• You must remember to always look out for your health, any changes in your condition must be reported immediately to your doctor. The longer you wait, the worse it will get – trust me, I know from experience. Being the laid back person I am has its faults, often if something is wrong I will brush it off thinking that it will fix its self, until I realise I waited too long to get medical attention, and then I’m stuck in the hospital again for longer than what would have been needed.

• A good support system of people who understand and will always be there for you through thick and thin is greatly needed.Luckily I have a loving family, amazing friends and a boyfriend crazy enough to stick by me. They are here to support me and join me along this journey, I hope I can spread this positivity with you all. Until next time!

Check out Ruby’s blog here 

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