Friday, 30th November, 2007 and my life changed forever. I had not been feeling well for quite a while but kept putting it down to hormone problems and my hysterectomy that I had had a year earlier...
Having lupus sometimes feels like being a sergeant in the Army. Having to be strategic, strong, determined and always trying to win a war by facing many battles. Some battles I have won and some battles I have lost. My journey started when I was 17 and before my diagnosis in 2000 I had never heard of Lupus or had any comprehension of how much my life would change because of it.
My everyday battle with the Wolf (alias SLE), fibromyalgia, arthritis and degeneration in my spine and facet joints. Just a little thing to deal with in life, along with the other less significant problems such as Sjogren’s Syndrome, Antiphospholipid Syndrome, pleuritic pain in the chest due to fluid around the heart, headaches and muzziness.
My problems began in March 1998 while I was at work. I started with flu like symptoms which progressed to fevers, followed by night sweats. Three visits to the GP and a bunch of antibiotics later, I had not improved at all. In fact, my fevers were spiking higher daily and having been like this for three weeks, something had to be done.
This may or may not have been the start of my Lupus but it certainly was the start of me having ‘classic ‘ recognisable Lupus symptoms.
I woke one morning feeling as if I had the world’s worst case of flu. I was very fit (ex WRAF Officer) and healthy, rarely ill, certainly never been in hospital and never complained when I had minor ailments, so there was a clue of how ill I was in the fact I absolutely insisted upon going to the doctor.
My lupus story really begins in 2004, despite the fact that I had suffered from other health issues (that may or may not be lupus related) before things went from bad to worse. Things turned sour over Christmas break 2004-2005, I noticed my need for sleep had increased dramatically and I found myself suddenly sleeping all day long.
It all started around the age of 17. I would get stiffness in my wrists, which was making driving uncomfortable at times. I thought nothing of it, for the first few months, but then I started to get stiffness and swelling in my knees as well. Being so young, I didn't imagine it to be anything important or worth worrying about, but my mum was concerned about it and she encouraged me to go to the family doctors.
I must start by saying I haven't found it easy to sit and right my story. Putting the last four years down on paper proved to be difficult. For one I didn't want to physically write it ! Frustrated because I haven't quite mastered using the computer, much to the amusement of my 14 year old daughter Grace, whose assistance is unending!
What, How, Why? These are some of the responses I had when I was diagnosed with Lupus at the age of 34, and are many of the questions I have if I tell anyone about 'my Lupus!' It took quite a while for my diagnosis to be confirmed, but in 2008, when it was, OMG - What a Shock!! My husband was fantastic, and still is.
I'm married with two children and I was first diagnosed with Lupus (SLE - systemic lupus erythematosus) in 1995. It all started with a throat infection and joint pains that lasted for several weeks. My doctor referred me to the hospital to see a rheumatologist and I mentioned that my mum had lupus. A test was carried out and it was confirmed within two weeks that I had SLE.
Hi, my name is Caroline Hill and this is my story. In June 1996 I was a happy, healthy 30 year old woman, I ran a wine bar, had a good life, worked long hard hours and played hard too. I loved water sports, the beach and football. A day out that summer led to my life being totally wrecked, I went to the beach on my day off to go surfing, by 10pm that night I was in my local hospital covered in what looked like a bad case of prickly heat!
On 9th September 2006 a little miracle happened - our son Caspar Glemser was born. My name is Maebh (pronounced Maeve) Glemser and I have been a patient at the Louise Coote Lupus Unit since 1998. I was diagnosed with lupus in 1994, although looking back with the benefit of hindsight; I had clearly had the symptoms since 1989.
"Yes, definitely lupus, lupus erythematosis," said the dermatologist. "This is a sort of auto-allergy but don't worry, it's just your skin. Keep out of the sun and use this cream". Knowing that we were about to go abroad for a couple of years, she added "and don't let those foreign doctors put you on steroids!"
I was asked to write about what its like to be a Mum when you have a chronic illness. I thought about it for ages and had so many thoughts, I really didn't know where to start! In the end I decided the best thing to do is to be honest. So here is my most honest post to date. And most definitely the longest! Yeah, sorry about that.