WARNING:THIS POST CONTAINS IMAGES THAT THOSE OF YOU WITH A SENSITIVE NATURE MAY FIND DISTASTEFUL!
One day I really felt I needed to put down my Lupus story into print and today is the day. Anyone with Lupus or any other autoimmune disease will know how easy it is to put things off to another day simply because you have no energy to think let alone act upon your impulses.
Whilst the definitive diagnosis was made in August 2010 by my consultant, my GP had told me that the blood tests suggested an SLE some months before. I was left musing as to what this meant and struggled on through the school holidays with aching joints, inflammation in every bit of tissue and muscle and unable to sleep or walk or go to the toilet without crying. No shoes would fit, I could not cut my food and I staggered from day to day covered in rash and constantly looking and feeling flushed and feeling like I had flu. My hands were swollen up, if I went swimming even the pressure of the water on my skin brought tears to my eyes. Not good.
As I struggled through the summer months waiting to see the consultant for the first time I was taking the prescribed NSAIDs which really gave minimal relief from the swelling and accompanying pain. Nevertheless we went away to Crete where I plastered on the Factor 50, wore a wide brimmed hat and covered myself with cotton scarves.
A couple of weeks before my first visit to the consultant Chris and I decided we would revisit the gardens at Barnsdale. It was an overcast day when we set out and had drizzled on and off. We enjoyed looking again at the planting schemes and spent quite some time fascinated by the bee hives which had a perspex panel so you can view the colony at work. The sun had peeked out by now but we noticed too late.
That night I went to bed with a very itchy and puffy face. I remember waking around midnight with a very tight feeling across my cheeks and lips. I went into the bathroom and was not too pleased to see how swollen my face had become. But I decided to take an antihistamine tablet and went back to bed. I couldn’t settle. My face was swelling further and becoming more uncomfortable. I phoned NHS direct for advice and was told to take another antihistamine. This made no difference. By about 4am I was in pain and very alarmed. A & E was the next stop. I explained that I was awaiting my first Consultant appointment and that I had been told I had Lupus. I was sent home with the instructions to take even more antihistamines!
By morning I was quite distraught. I got an appointment with my GP who took one look at me, said words to the effect of oh dear… and prescribed a daily dose of 20mg prednisolone (steroids) and said stop the anti inflammatory drugs. Come back asap if no difference within 24hrs.
At this point I need to say I am very lucky to have an extremely vigilant and astute GP who, from the start has been brilliant regarding the journey to diagnosis and his support in the three years since.
Thankfully within 12 hours I was feeling the benefit of the steroids and at 24 hours the swelling was greatly reduced. Miraculously, I realised I was pain free as well!
Now for the horror picture- you have been warned, I am not a pretty sight and I refer to this period as my Elephant Woman stage…
Attractive don’t you think?!
At the same time as this I was suffering from the various aspects of Lupus rash as follows…
And in other areas I won’t show you here!
Look what steroids can do…
Well, that was the start of a long journey that is to continue for the rest of my life. I take a cocktail of drugs to deal with the swelling, the pain and of course to counteract the detrimental effect of the drugs themselves which cause other long term health problems but that are preferable to the damaging effect of active Lupus.
I am not in the habit of dwelling on my misfortune, it is life but not as I previously knew it!
There is plenty more to this story and I will tell you more another time like the shaggy dog tale that resulted in the diagnosis (the Prequel!) the soap opera of medical appointments, the chemist shop of medication and the Phoenix that is emerging from the ashes!
LUPUS UK are of invaluable help and I would advise anyone with Lupus in the UK to seek their support.