My Story: November 2011
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, my best friends over the last couple of months. 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 Irish people looking for advice on Irish hospitals or just wanting to speak to Irish people 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 Irish people we could talk to about what we were going through. I went in search of a support group. I realised quickly that there was only one site in Ireland, this one group is the only support group in this country for Lupus patients or their families. I cannot find any other information online for Lupus patients in Ireland. I cannot find any statistics for Lupus patients in Ireland. In fact I cannot find anything of much informational value for Lupus patients in Ireland.
I realise the importance of a support system in your locality or at least in your country and there is a lack of awareness and support for people suffering with this debilitating and lonely illness. 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.
There are 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. I am hoping that, by spreading awareness and support through this page, I will eventually be able to set up and provide a solid support system for people with this condition.
May 2012
I wrote that story 4 months after I was diagnosed with Lupus SLE and reading back on it now I can’t believe how much Lupus Group Ireland has grown. It is evident that this support system was vital to people in Ireland who have suffered with this condition for months, years, decades even.
Since this story was written I have had my ups and downs and I have learned quite a bit more about my condition. I have had trial and error with different drugs, namely immunosuppressant drugs which suppress my immune so that my body will stop attacking my organs and joints. Sometimes the medications can make you sicker than the actual condition, another thing I have learned over the past few months.
I have learned to deal with the overwhelming fatigue that will see me bed ridden for hours a day and the face rashes that just appear at their own will. I have learned that I can no longer go outside in the sun with the risk of serious harm to my health, even if this means factor 50+ going to work in mid December. That is also something I have adjusted to.
I have learned that I too have Double Stranded DNA or dsDNA which my Doctor tells me will more than likely attack my organs at some stage, whether it be 6 weeks, 6 months or 6 years, in his words “I don’t have a crystal ball, I can’t tell you when this will happen”. I have learned that living with Lupus is like living with a temperamental friend, he will annoy the hell out of you sometimes but other times you can live with him and accept him for all his flaws.
This is what I have learned in 10 months…I wonder what more I will learn in 10 years!!!
Listening to the amazing accomplishments and attitudes of these girls over the last month of stories I have been bowled over. I know if it ever got worse for me that I can do it, these girls, who are the same age as me, who live a similar life to me, who have family, friends, children, partners….they got through their bad times and do you know what…..so will I!!!
Again THANK YOU so much to all of the amazing, beautiful and inspiring women who have all shared their brave stories. I know these stories have touched every single one of us, whether it be our family, our friends or each other, we have all accomplished something this past month….we have helped people understand what life is like Living with Lupus!!!!
Lots of ((hugs))
Jess x
