Caroline                                                                                              Print This Story......  

Caroline was diagnosed with Lupus August 2005 and says:

“While I don’t want to concern people who have just been diagnosed, I can honestly say that Lupus has changed my life considerably and not for the better! I was a student in my first year at Aberystwyth University, and loving every minute of it, when it was first suggested I had Lupus.

Since I had moved to Aberystwyth, I had frequently been ill, suffering migraines (which I’d never had previously) and feeling generally ill and lethargic. I put it all down to living the student lifestyle!

During May 2005, I developed what I now know to be the ‘Butterfly rash’. I was concerned when this began to spread over my cheeks and become quite scaly as I was due to go on holiday. I didn’t want to risk being told it was contagious and that I couldn’t fly so I put off going to the doctor until my return – not realising the damage I may have been doing by being in a hot climate without adequate skin protection. On my return, I saw a doctor who, initially, thought I might have had a reaction to something such as a change in washing powder. Luckily for me, a second doctor’s opinion was asked and he told me the distribution of the rash looked like Lupus. I’d never heard of Lupus and was, naturally, concerned when I was sent straight to the local hospital for blood and urine samples.

After being told of the possibility of Lupus I asked my boyfriend to look it up on the internet and I was horrified by what we read as, not knowing much about it, I assumed I was going to develop all the symptoms, that I wouldn’t be able to have children and that I would die of vital organ failure. I now know this not to be true as all patients are different.

I was advised to attend a hospital outside of Aberystwyth for more tests and I decided I would be better off in Birmingham with my parents for the summer, just while I sorted everything out. Sadly, I have been unable to return to Aberystwyth.

After excruciating joint pain, so bad that I couldn’t get out of bed some days, and weeks of persistence, my local GP managed to get an appointment for me at the Queen Elizabeth Hospital Lupus Clinic where Dr. Caroline Gordon confirmed I had Lupus. I had been taking NSAIDs (e.g. Voltarol) and was now prescribed steroids (Prednisolone) which were like a miracle cure for the first few weeks – I could get up and walk about, my hair loss stopped and I felt better than I had in months. Since then I have been put on Hydroxychloroquine (anti-malarials) and Methotrexate. I was told I also have antiphospholipids in my blood which will greatly increase my risk of blood clots and, possibly, put me at high risk for pregnancy. I am only 20 years old and have no plans for a baby in the near future but all ladies who have the notion of becoming a mother at some point in their lives will understand that, at such a young age, to be told you may not be able to have a baby is a serious blow. Since I began taking steroids 6 months ago I have noticed an improvement in my joints but I have also experienced a weight gain of a stone and excessive hair growth.

I used to have long, curly blonde hair which, due to the hair loss, I cut shorter. I have a lot of hair so it wasn’t very noticeable, just inconvenient. Being told using hair dye or bleach may cause my hair to fall out completely, I have now reverted to my natural dark brown colour.

Since being diagnosed with Lupus, I feel I’ve lost my identity – I don’t look how I want to look, I’m at a university I really don’t like (I’ve transferred to a local college) and, at the moment, I’m finding it hard to see a future with Lupus. I can’t hold down a job because my symptoms vary from day to day and I am always tired. Some days I’m too swollen to walk or I have sickness from taking the medication. I have been refused Incapacity Benefit twice and I am just generally frustrated with life. I know I’ve become terribly impatient and moody and feel almost like a victim, which I know is crazy because there are so many people in the world who are much worse off.

The only good thing I can think of to come out of having Lupus is that it helps you to put things into perspective so, when my friend is moaning about some bloke, I’m thinking to myself ‘there are more important things in life!’

While everybody’s experience of Lupus is different, I have to admit that the more I read about it, the more scared I become. At only twenty, my life has already been disrupted so much. I’m scared that I might not have much more of a life. I had aspirations of becoming a drama teacher now, having conducted work experience in a local school, I know there is no way I could cope. I don’t want to spend my life living on handouts or to be restricted in what I can do.

The fact is that Lupus is life-altering and you have to adjust accordingly – something I’m trying to come to terms with!

 

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