WHAT IS LUPUS?
ness of the condition, or even help someone else who may be going through something similar.
When I was feeling at my lowest ebb in July, when I was hooked up to machines and being pumped full drugs and medicines, someone close to me said: “Whenever you get dealt a s*** hand in life you’ve got to remember one thing: cheerfulness in the face of adversity.” And they were right. So rather than focusing on the bad right now, I’m focusing on the good.
Yes I have lupus, but I’m alive. I’m not in as much pain any more and I’m getting the treatment I need. I’m surrounded by amazing family, friends, an amazing boyfriend and incredible consultants too.
If there’s one thing I’ve come to realise recently it’s that there’s always someone worse off than you in this life.
You can see that just by walking around our local hospitals. There are people who have lost limbs, lost loved ones, lost any quality of life they once had. But they smile and they say hello and they get on with it. And that’s exactly what I plan to do. At the moment I’m taking it all one day at a time.
I’m also stocking up on the fake tan, The lupus can stop me from going out in the sun, but that hasn’t stopped me from asking all the patients on my ward to chuck on a surgical glove and tan my back.
I’ve come to realise that laughter and being happy is the best medicine whether that’s through friends, family or a bottle of fake tan.
I’ve already overcome the worst, and I can guarantee that, real soon – just like I’m sure Selena will be – I’ll be back to my normal self, climbing mountains, exploring and adventuring. All while rocking an amazing fake tan!
If you would like to donate to Lupus Research Alliance visit www.lupusresearch. DESPITE being lifelong, lupus is a condition that “flares” up and down. So while one day you might feel right as rain, the next you could be holed up in bed feeling like you’re on death’s door. I like to call them “good days” and “bad days”, but these flares can last anything from a couple of hours to weeks and maybe even months in some cases. There are a number of things that can trigger a flare-up, stress being one of the main factors. For me, one of the biggest triggers is the sun so I constantly have to cover up and wear a high factor sun block. Sun bathing is also completely out of the question. HOW LUPUS AFFECTS MY BODY Lupus can attack and inflame any part of your body. It mostly goes after your muscles and joints but in more severe cases like mine, it can attack organs like the kidneys, lungs, the heart or brain. I have Stage 4 Lupus and the condition has affected several parts of my body in a number of ways, including: Kidneys – the lupus resulted in severe swelling on my kidneys, causing them to go into organ failure. My kidney function is now getting back to normal, but there is still inflammation and a risk of scarring in the future which could ultimately mean transplant/ dialysis Eyes – the optic nerves at the back of my eyes were so inflamed, doctors feared I could lose my vision. This also caused the shapes of my disks to change shape in a way many doctors had never seen before. I also suffer from severe photosensitivity meaning my eyes can’t process bright lights and I have to wear dark glasses, as well as experiencing severe migraines and vision loss Muscle and joint pain High blood pressure Heart – Doctors have recently found a murmur in my heart and I’m being sent for further tests and scans Skin – Lupus sufferers develop a number of different skin conditions, including a “butterfly” rash across the middle of their face. This can be unsightly and embarrassing for sufferers. Fatigue WHAT DOES THE FUTURE HOLD?
Following my diagnosis in July, I was put on a number of medications, including a very high dose of steroids.
I still take around 15 tablets a day including steroids, blood pressure drugs and calcium. I’m also undergoing immunosuppressive treatment to turn off my immune system.
Doctors initially suggested a course of chemotherapy but this was decided against due to the fact that one day I want to have children.
It is hoped that once the treatment is finished and my immune system is switched off, that it can slowly be turned back on and will (hopefully) function normally.
This essentially means that I will be in remission. It will then be a case of avoiding another flare-up and all the triggers that cause them.
My whole lifestyle has changed completely since being diagnosed with Lupus.
The treatment doesn’t come without its side effects – hair loss, bone damage, cancer risks, fertility issues, stomach cramps and of course picking up every cold, flu and infection going but if anything, lupus has made me more aware of my body and how I was neglecting it before.
I’m healthier, drinking less, I’ve quit smoking and started things like swimming and yoga.