What is Lupus?
Patient Stories
Priya's Story
Let me begin by telling you a little about myself. I am 27 years old, I have always been very creative and since graduating in 2003 I have had several exhibitions, sold work to galleries and also take private commissions. I would describe myself as being pretty active, sociable, enjoying shopping with friends, films and love to make things to gift to people. I have always been outgoing, I was notorious at my house at uni for being out all the time, and once went out every night for two weeks straight while spending all day painting and making presentations for the end of year. My friends and I used to love dressing up and I often made costumes and have dressed up as a pirate, rock chick, a bird, a red Indian, a cat and more.
My reason for telling you about myself before the lupus is that I dislike being defined by it. It has definitely had a huge impact on my life, and yet I refuse to have it lurking in the background in every moment of my life.
My story begins in November 2007 where I started noticing my vision was quite blurry. I did put off going to the hospital, but knew deep down that it was likely I had Iritis (eye inflammation disorder). I had it in my teens and had hoped it wouldn't come back. However a good friend offered to take me to hospital and so off I went to Eye Casualty. I was right- the Iritis was back and I was prescribed steroid eye drops. A few weeks later I noticed my fingers getting stiff and I seemed to be plagued by fatigue. It didn't make any sense as I was doing far less than usual, my late nights were rare but my health was getting worse. I went to see the doctor who ran some tests, but ruled out arthritis on a physical examination as I had no visible swelling.
I wasn't too worried about all this and was excited about my new job opportunity which would mean me living 'up north' and working with students to raise achievement. I pushed my health to the back of my mind and started getting ready for the move in December. I got a phone call from the doctor who said I had a positive ANA test and must make sure my new doctor referred me to a rheumatologist to do more tests. She reassured me that a positive ANA test on its own means nothing but I need more investigation because of my other aches and pains. )I have had Raynaud's Phenomenon since I was 19 which is where your fingers go all cold and numb in extreme temperatures. I am sensible and keep warm and try to avoid it happening).
I noticed a real change in my mood, sometimes crying over nothing. I put it down to moving away from home and missing my mum. I also started getting pains in my stomach and feeling really nauseous. My real low point was in February half term where my shoulder and back seized up and I couldn't do anything. I felt crippled in pain and spent three days propped up against a radiator. Luckily I had my laptop to keep me entertained. I can't even recount all the other pains that came and went during 2008, it is only now that I'm able to put all of these symptoms together as being down to the lupus.
In the summer I had an appointment with the rheumatologist who was surprised at how well I looked and said 'You can't have anything too bad as you look well compared to most patients I see'. It is only later that I realise that this is a real bugbear with most lupus sufferers, you can't see the damage and pain we suffer. The rheumatologist was very nice and I got my diagnosis by letter (?!) with a recommendation of iron supplementation as I was anaemic and my iron stores were incredibly low. I had noticed more hair shedding, and did look pale which is odd for an Indian. Nevertheless I truly appreciated knowing what was wrong, all the aches and pains seemed so unrelated that I felt like a hypochondriac. My colleagues were very supportive and I would not have been able to cope so well if they hadn't been so understanding.
Further tests including an echocardiogram and lung tests showed that I was lucky and didn't have any damage to my organs.
Again in October I woke up in agony, I felt like I had pulled something in my back near the shoulder blade. I had trouble getting in the bath, I couldn't twist my neck without intense pain. This time I noticed it really hurt if I laughed or took a deep breath. I felt so alone and again here came the tears. Who would believe that I had actually gone for ten years without crying and was usually in control of my emotions? I was still in pain on Monday morning, but took a hot water bottle to work. I didn't take time off work and wasn't going to start now. After getting home from work and still not feeling any better, in sheer desperation I walked to the local hospital and asked to see the nurse. Luckily the nurse was lovely and helpful, she said it seemed like I had pleurisy (inflammation of the linings of the lungs). It was the tail end of it so I didn't require any treatment, but taking deep breaths was essential.
My fatigue started getting worse, although I was going to work everyday all I wanted to do was crawl into bed, have a hot bath on stand next to a radiator. I even stopped my artwork, my canvases sat around untouched and unloved. Everyday things such as washing up became really difficult. Depression hit me and my whole memory of this period is very blurry.
Everything started to get easier when I moved back home, I still hadn't told my parents about the lupus. I said where I was living had become unbearable due to untreated damp (which was true too). I then told my mum and a few months later I told my dad. Both of them were so supportive that I wish I had told them a lot sooner. I guess I didn't feel like I understood the lupus well enough to explain it to someone who hadn't even heard of it.
I've made some changes in my life to avoid unnecessary medication, notably my diet is a lot healthier and have taken up Yoga. I have had a couple of flare ups since but only involving my joints and fatigue and have quickly got better, though my iron levels are low again.
The worst thing I find about lupus is how it affects how you feel so deeply. It is lonely as it is so impossible to describe, and has little physical manifestation so it's easy for others to forget. You really find out who your friends are when you get a chronic illness, if you get any negativity then you may have to say goodbye to some people. Stress often triggers a flare and therefore needs to be avoided. And people who think more about how your condition affects them don't really care about you anyway. My personal experience has been that supportive friends pop up when you cast aside less positive associations.
Work keeps me busy and I don't like sitting around feeling sorry for myself. I would also like to say lupus has brought about a lot of positive things in my life. I do things I want to do now rather than later, I am very aware how unpredictable this illness is and so try to get the most out of each day as possible. A positive attitude, prayer and a belief that you are not this body is essential. I know anger and resentment are so destructive but natural when one loses control over their body.
To end on a hugely positive note, I have decided to set up my own business selling greetings cards and wedding stationery at www.priyachauhan.com. I also set up The Green Diva www.the-green-diva.com to share how I got healthy through diet and exercise. If I hadn't got lupus I may not have got the strength to follow my dream. Everything happens for a reason.
Priya sells a gorgeous butterfly card (photo above) via her website www.priyachauhan.com and 50% of the selling price is donated to us!!
April 2009
