I am only 21, look about 16, but my body feels like it’s 50.
Welcome to my lupus life.
Hey there!
My name is Ruby, and I would like to share with you my journey with Lupus. I decided to start a blog to not only keep a log for my family and friends, but also in hopes to spread awareness of this condition. My aim is to provide a means of help and support for people who are struggling with this condition, especially those who are young, afraid and need a sister to turn to. The reason for my URL and blog title is that positivity goes a long way, it helps us to stay strong, encourages us to keep fighting and reminds us that it is not all so bad!
Prior to diagnosis, my immune system was amazing. Any fevers, coughs or colds I contracted would be gone by the next day. I barley took any sick days off school, was always full of energy and I loved all kinds of sports (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.
What is Lupus?
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.
My Diagnosis and Treatment
It’s been almost 5 years since my diagnosis, to be honest I am unclear on when my first symptoms began, however I am very clear on when they became apparent to me. Diagnosis took around 5 months, complete with weekly GP appointments where I would be sent 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, no one took me seriously 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 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 as I didn’t know how serious the issue was. Once arriving at hospital, I had my own bed with a TV on a ward full of other children, after what seemed like forever the doctor arrives to tell my family and I that they believed me to have SLE. After receiving the news, I didn’t feel much different not much worry went through my mind I just kind of shrugged it off. This was because I didn’t understand or even know what lupus was, I hadn’t realised it would affect my life forever. 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 is known as the “moon face”, I’ll insert a photo for you.
Before…
After…
Symptoms and Flares
My symptoms at the beginning were: extreme fatigue, rheumatoid arthritis, abdominal pain, malar rash and low concentration levels. This was particularly hard to deal with as I was still in 6th form, 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 the 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 major “flare” (luckily) so far.
Flare 1: I was diagnosed with having pericarditis in February 2015, during my second year of university. Pericarditis is the swelling of the fluid-filled sac surrounding your heart. Each breath I took was painful, climbing stairs or even walk a short distance would get me breathless. Lying down was extremely painful, meaning that I spent the weeks following sleeping in an upright 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.
Additional symptoms:
1- Reynolds phenomena, this is a condition whereby my fingers and toes turn white and numb due to the cold weather, stress and anxiety. 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…etc, I basically can’t feel what I’m touching. I wear gloves most of the time I’m outside, though it doesn’t help too much. It takes around half an hour once back in the warmth for my fingers to return back to normal, as you can imagine it’s pretty annoying especially when I have lectures as I can’t do much in terms of writing when I can’t feel my fingers.
2- Foot inflammation, the past year or so I have been experiencing excruciating foot pain primarily in my right foot to the point where I am no longer able walk without aid, there have been times that I’ve had to be carried home it was so bad. I believe that it flares when in hot weather or after activities that involve a lot of footwork. As a result I have had to stop playing badminton as it has become a trend for it to swell up the days post badminton.
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 in a lot of ways. 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.
How am I now?
So this is me now guys, I would say that I’m quite a chilled, level-headed, happy-go-lucky person who lives life as it comes. Having lupus has never really gotten me down or changed my perspectives of life in a negative way. Of course I’ve had moments where I’m an emotional wreck with my thoughts taking over my mind thinking – why me? But I also understand that it’s not anyones fault, noone is to blame and there is nothing I can do about it, the best response is to carry on living, not let it define you and not allow it to be an excuse. Because otherwise, it will take over you. I do believe that everything happens for a reason, though reasons may not be clear it is important not to blame or hate. Perhaps someone like me was given a condition like this to make myself a stronger person and perhaps even a role model. People say I’m brave, and they don’t know how they’d cope if they were in my situation, but for me it doesn’t affect me mentally in the way I know it would others. I don’t mope about my condition or bring it to surface when someone is complaining about a common cold because, what’s the point? Negativity will get you no where, I know what it’s like to be ill and placing myself at a superior level to those who do not feel pain the way I do will do neither of us good. I am a empathetic person with a good heart, I can be a pushover at times but I know my limits. I choose to be the way I am as I would rather bring light than bitterness to those around me and myself. Not many people even knew about my condition (until now) even though it has been a part of my life for almost 5 years.
My last thoughts / advice…
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 becomes a part of you. 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:
1. Always look out for your health, any changes in your condition must be reported immediately to your doctor/specialist. 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 I’m stuck in the hospital again for longer than what would have been needed.
2. Have a good support systemof 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 and join me along this journey, I hope I can spread this positivity with you all. Until next time!
Much love, xX