Thursday, 16 January 2014

Lupus Q&A


Illustration from Pretty Sick Art

When I first started this part of the internet I rarely spoke about Lupus, which affects me every single day. But now just 6 months on, thanks to the wonderful blogging and chronic illness community, I feel strong and comfortable enough to talk about it and in turn answer some of the questions I've been asked by friends. If you haven't already please read My Life With Lupus first

How were you diagnosed with Lupus?
I became ill mid october in 2009, I had big ulcers on my throat and tongue and could barely eat it hurt so much. By November 4th I was barely able to gulp down water so my GP sent me to A&E. As Lupus mimics a lot of other illnesses so all signs pointed to leukaemia, but thankfully that was ruled out. My white blood cells were very low and thankfully my doctor had treated Lupus before so he pushed the diagnosis. I had blood tests and a bone marrow scrape to determine it and was given lots of pills and tube fed to push my weight back up.

What are your symptoms?
My main symptom is fatigue, I'm almost always tired or lethargic. But I also get aching joints and bones, migraines, catch infections very easily and m hair can thin quite a lot. I can also get quite foggy headed and my reactions are quite slow. It completely changes everything

What are some of the stranger symptoms of lupus/the symptoms that someone without lupus wouldn't necessarily think about?
The biggest symptom is fatigue but the strangest is how forgetful I am, you wouldn't think an immune system illness would turn your brain to shit but it really does.

What kind of medication do you take?
I take around 13-15 every day; antimalarial to fight illnesses, immuno suppressants to dampen my overactive immune system. migraine medication, steroids, stomach medication and vitamins.

Do you know any statistics about how many people in the UK or US have lupus?
I googled for this question! Around 1.5 million have it in America and approximately 24 thousand have it in the UK. It is far more common in women. Just 5 million people have it worldwide.


Do people usually know about lupus or do you have to explain?
As its becoming more common some people do know but there are still a lot of people who don't know. That's why I always aim to educate people

How long did it take for you to get diagnosed?
From when I took really ill it was about 2 months but I'd been ill for about 5+ years and that was just attributed to my arthritis, Raynauds and coeliac.

Have you found that most doctors have a general knowledge of lupus? Or are they very ignorant?
Luckily I haven't had too many ignorant doctors, ones who weren't sure look it up before giving me treatment. Though I did have a gynaecologist tell me that "maybe this is just the level of chronic pain your body has to get used to"

Have you ever met someone else with lupus?
I know people through tumblr and other internet places with Lupus and its nice to chat to them but never in real life.

How do you cope with flares and bad day? What helps?
On my really bad days I cant function so I usually stay in bed or do the minimum. If I'm out and have a flare I be sure to text my family and boyfriend then travel slower and be sure I have water and in a safe environment in case I faint.

Do you know if anything triggered your lupus?
Strangely enough the doctors believe that my Lupus was awakened by the acne medication I was taking.


Can you think of any misconception people have about lupus?
That I'm going to die or another extreme that I'm just lazy. Its not a misconception but one that annoys me more than anything is when someone says "its not lupus" Yes it is House!

How has lupus changed your life?
My life has changed in every way possible. I had to give up my job, I'm always tired and I can't plan in advance too far just in case.

How do you manage university?
Uni is a struggle, but I manage it quite well. Luckily Im only there 3 days and I have a very supportive network there. My uni also has a great disability support service which means that I can get extensions if I need them and special considerations for other things.

Did you suffer from misdiagnosis?
I was treated in Newcastle as they thought I had cancer and 2 weeks before my hospital stay my consultant insinuated I had anorexia. So that was helpful.

If you think you may have Lupus or need support/ information please visit Lupus UK or Lupus Foundation of America

I would love it if people could share this post, although there isn't a cure, education is the best way to finding a cure one day. 

1 comment :

  1. Thank you so much for linking me to this post x All I can say is you poor love - a very honest and informative post x I have raynauds and gluten and wheat intolerance too (a long story butI had DH but my endoscopy came back negative for coeliac disease - yet an exclusion diet cleared all of the symptoms and my skin up - very odd) I can't wait to meet and support bloggerteaspoon xx

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