The Green Diva

Lupus and I

Let me begin by telling you a little about myself. I am a creative professional in my twenties and since graduating in 2003 I have had several exhibitions, sold work to galleries and also taken 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 it is most definitely 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. 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 pretty big changes in my life to avoid unnecessary medication, notably my diet is a lot more healthy and have taken up Yoga. I have been in wonderful health in 2009, and haven’t been so fit since I was at school!

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. Now each day brings beauty, fun and joy that I just have to share. The Green Diva is about sharing my joy with you all.

Smile! x