What is Lupus? Lupus Awareness Month

This week I am going to take a slight diversion from my normal knitting talk, and share a bit about my experience of Lupus.  October is Lupus Awareness Month and there have been a few articles floating around on the net – especially since Selina Gomez has been diagnosed with the disease.

So what is Lupus?  Lupus is an auto immune disease – basically it’s your own immune system turning on itself and attacking like it’s a storm of Orcs in the Lord of the Rings!  Mind you the most distressing thing about the disease is that you never know where it’s going to turn up – some people have rheumatoid arthritis, some have chronic skin rashes and some, like me are unfortunate enough to sustain organ damage.  It’s a nasty disease, which is only really just being 
understood.

Each Lupus sufferer has a different story to tell – and yes they can be so different that you may think they are suffering from a totally different disease – but each one of us can tell you how much it affects every aspect of your life.

I was diagnosed finally at the age of 24, after having 2 years of seemingly constant illness.  Every six weeks or so I would get a ‘stomach bug’ which would put me to bed for 2 or 3 days and take a further 2 or 3 days to get over, with terrible headaches, vomiting and urine which looked the same colour as a class of Coke.  Each time would be worse than the last, but although I was ill I still looked really fine – no particular weight loss (I was slim at the time already) and because I was fairly fit at the time too, I bounced back quite quickly.

So I kept on working and struggling to maintain some semblance of normal in my life.  I had just got a really good job where I was travelling around the UK and I put on a brave face.  But it was terrible – I would be throwing up at work and back at the hotel at night.  I remember one particular time being so ill that I actually threw up in the reception of a hotel (The Cumberland in Oxford Street) whilst trying to check out – to the chorus of disapproving “Should not have drunk so much last night”…………… why, when seeing a young woman clearly sick, do people think you have been drinking or are pregnant!  Work was no better – they accused me of taking too much sick time and because of that they were going to give me a poor performance review – clearly they thought I was making it all up because I ‘you look well – you don’t look ill’ – but the reality was that each day was a monumental struggle to get through and I did not know what the heck was wrong with me.  Doctors made some wild assumptions including Porphyria – the same disease that ‘Mad’ King George had in the 18^th Century!  I was put onto antibiotics and went for many blood tests but to no avail.

Eventually one foresighted doctor referred me to the Royal Airforce Hospital, Halton, Renal Unit.  There I had 3 kidney biopsies and eventually they came to the diagnosis of Lupus!  I of course had never heard of it!  My consultant, Wing Commander Rainford, specifically told me NOT to go off to the library to look up Lupus!  So what did I do…………yes you have guessed it – I went off straight there and saw in an old book that Lupus was uncurable (yes that’s still the case) and that most people died within 2-3 years of diagnosis (wrong wrong wrong!) – well, as you can imagine at 24 this was pretty devastating!!   Of course then, as now, progress was being made all the time and now 25 years plus later – I am still around (well not without some other major health issues – but I am still here!!).

So the great thing was that I was no longer going to being sick every 6 weeks – this was going to make my life so much better – yes! …………………NO!  Instead I had to take a cocktail of drugs to keep my immune system in check – including the heinous Prednisolone!!

Prednisolone made me fat, made my face swell, made me even more tired, made my hair brittle and made me super sensitive to the sun (added to the fact that Lupus makes you sensitive to the sun anyway!).  Vitamin D made me itch – itch like there was no way of ever escaping (in the end I refused to take it!!) and other immunosuppressants made me break out in warts!

Coupled with regular trips to the hospital (which was over 80 miles from my house), sometimes as an inpatient and sometimes just for a check up, I found out what it was like to have a Chronic disease.

I was 24 – my life was ahead of me – a life which was now going to be dominated by illness (and still is to some extent, although I have had to learn to live with it!)  I had a disease which no one understood which made me look well (note ‘wow you have put on some weight in your face – you ARE looking well’!!) – with no idea where it was going to lead me.  I wanted children – that was going to be pretty much out of the question now. It was all pretty gloomy.

I’d like to tell you it all ended with a happy ending – it didn’t, it doesn’t…………..

My symptoms came and went  over the next 5 years– sometimes my Lupus was really raging and I would be ill again, and sometimes it would be in respite for a couple of months.  I never knew what it was going to do next.  My periods were heavy,  I had a rash on my face,  I was tired, I got migraines – we never knew if it was Lupus or something ‘normal’.

And then when I was 29 I got pregnant!  Lupus was pretty quiet at the time, I was ‘just’ tired and picking up every cold going – but aside from that the Doctors agreed that with care we could proceed with the pregnancy.

I am not going into the details too much but Lupus was sited as the reason I got pre-ecplampsia, delivered a month early and why I was carrying the Streptococcus virus which passed to my unborn daughter in the birth canal, and why she died 12 hours later………………  Her death certificate sited cause of death as ‘Lupus’.  Whilst she may not have had the disease herself – it caused her death.

I was of course devastated, I felt like I had let my partner down – of all the people he could have chosen I was the one who was sick, who had caused the death of his daughter – I was not in a good place.

Lupus is an evil disease and preys upon you when you are at your lowest!  It flared up (Lupus ‘flares’ are those times when the disease is active) and I was very ill – mentally and physically.  Wing Commander Rainford told me that the only thing to do before too much more damage was done, was to put me onto Chemotherapy (Cyclophosphamide, same drug as is reported Selina Gomez been given).  Now this was not the intensive chemo that cancer patients have to bear, but was a once a month trip to the hospital for over a year to have a cocktail of lethal drugs which made me feel absolutely vile for 2 or 3 days (and although I can hardly believe it now, I drove the 80 miles there and back each time!!!).  Thankfully I have a mad mop of hair and I did not lose too much,  but I went back onto steroids as well – a low time.

It was then that we decided to get married and right up until 1 week before the wedding, we did not have a photographer – I did not want photos of me on my happy day, looking so awful.  We did go ahead and get a photographer and even now when I see my wedding photos I feel a flutter in my stomach – this was not how it was supposed to be – I was supposed to look like my friends did on their wedding days– the gorgeous bride………….I wore a big hat to try and hide my huge moon face.  Yes you might say that that’s very vain of me – but this disease had chosen me – it wasn’t fair, why had it not chosen anyone else – pointless thoughts of course.

Fast forward four years and Lupus had finally gone into remission.  The disease had only affected my kidneys (not sure if I should be thankful for that or not) and RAF Halton had closed down so I was referred to the only Lupus unit in the country at the time at St Thomas’ Hospital under the care of Professor Hughes – the UK pioneer of Lupus research.  Professor Hughes agreed that we could try for another baby so we did just that and fell pregnant very quickly. There were lots of complications in the pregnancy, but our daughter Florence was born 8 week premature at St Thomas’s hospital on 27^th December 1996.

And then my kidneys completely failed………………………………………and my Lupus completely disappeared from my system – like the Orcs, it fled leaving devastation behind!

I have had many more problems since then (Dialysis, Transplant, Cancer – I can save those for another day!) Lupus is a devastating disease and its twists and turns can be cruel and unpredictable. I am the lucky one, I got my transplant, I have a beautiful daughter and son (born after my kidney transplant) - I consider myself lucky - others are not so lucky.

 I wish Selina Gomez the very best, my hope is that she can do more to promote understanding and research into Lupus – but give her space, somedays she will be looking her usual glamourous self, but underneath she will be a vulnerable 23 year old, who is tired beyond anything she has ever felt before and getting to grips with the fact that her life will never be the same again. 


My heart goes out to her and all my fellow sufferers throughout the world in this awareness month.

More information on Lupus can be found at:

www.lupusuk.org.uk

www.lupus.org.uk

www.lupus.org

Images above are from the Lupus UK website and more facts can be found there and on their Facebook page.