Jessica's Story (Aug 11, 2013)
I believe I have had Lupus for many years now. It may have started when I was travelling around Australia in 2006. Whilst backpacking through the east coast I began to break out in severe rashes on my arms, legs and chest. Blister on top of blister would form and no amount of creams or lotions would stop the breakouts. I then began getting very ill: severe kidney infections, stomach infections, bronchitis and sinus infections.
It was after this episode that every time I went on a sun holiday I would have a severe reaction, breaking out in terrible rashes and being bedridden with all sorts of infections. I went to the doctor and he told me I had an allergy to the sun, I accepted this diagnosis, and over the following years I stayed pretty much clear of the sun.
It was only in May this year that the symptoms began to get out of control. I had just bought a new home, and was studying law at night and working full time as a legal PA. Needless to say, I was extremely stressed. When my exams came around in May, I had broken out in vicious rashes on my face and all over my arms. My body slowly began to stop working, joint by joint, day by day.
I went to the doctor for some sort of answer. What was happening to my body? And then, it all began… I had every blood test you could imagine, from Lyme disease, Rheumatoid Arthritis, Thyroid Glands to Lupus. Every test came up normal, with the exception of my nutrient levels, which were extremely low. I began to get three B12 injections a week to keep my energy levels up. Yet, each day my condition got worse.
The joints in my hands became so sore and swollen that every morning I would struggle to brush my hair. I couldn’t lift a cup of tea or open my purse. Every day my body got worse, and nobody could tell me what was happening. My hips would give way so that I couldn’t stand up properly. My neck seized completely so that I couldn’t move my head from left to right; my jaw became inflamed and blisters began to form in my throat. I would wake up in cold sweats almost every night. I was starting to get very ill very quickly.
After months of blood tests my GP was at a loss, and he referred me to a Rheumatologist who specialises in Lupus. The Rheumatologist then sent me for further tests. After weeks of waiting I was called back to be told I had Lupus SLE.
I immediately went home and began researching this mystery condition. The internet showed people lying in hospital beds with terrible scarring on their faces. One medical advisor in New England claimed “the outlook for lupus patients is much better than it was twenty years ago or more…with improved diagnostic techniques and medications these days they can expect to live for up to ten years”. All I could think was my life is over. Ten years!!! I’m only 26, I want to get married, have children, see them grow up…No, this was not long enough for me.
Eventually, I grew more and more curious and I began to venture back online. This time, I restricted myself to support group sites. I found The Lupus Site in the UK and The Lupus Foundation of America. The members of these sites became my allies and I began logging onto the forums and asking questions, I began talking to other Lupus patients, and everything began to get better. I found out that, with early diagnosis and the right medications, many Lupus patients can expect to live a completely normal life span.
While I was on these sites, I saw over and over again people in Ireland looking for advice on Irish hospitals or just wanting to speak to people in their locality with this condition. I met an Irish girl on one of the forums, who was seeking advice on her diagnosis. We began to message daily, and became a good support system for each other through our difficult days. We wondered if there were any other people in Ireland we could talk to about what we were going through. I went in search of a support group.
With Lupus, your health changes daily. Today I might wake up and work harder than anyone I know. Tomorrow I may not be able to walk from one end of the room to the other. That’s what Lupus is like. It can attack any part of your body at any time of the week, day or hour. By 8pm tonight I may not be able to walk up my stairs, by 8am tomorrow morning I may be able to run a marathon.
Since my diagnosis on July 2011 I have been put onto many different types of medications, some which have worked wonders and others which were a bit more trial and error. In October 2012 I was diagnosed with Lupus Nephritis. Lupus Nephritis is inflammation in your kidneys due to having Lupus SLE. I was very lucky in that it was caught relatively early and I have made a full recovery. I am happy to say that at the moment I am doing quite well.
In saying this there are still days that I just need someone to understand me. As supportive as my family and friends have been, no amount of explaining will allow them to understand how I feel when I can’t get dressed in the morning, or when I am unable to walk home from the bus in the evening. I don’t always want to explain. Sometimes I just want to talk to someone who understands.
For this reason, I set up Lupus Group Ireland. This Group is a support system for Irish people seeking advice and information on Irish hospitals, rheumatologists or just a general place to go for support and advice.