My Lupus Story Part I:The Wolf Bites



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…

autumn fair 044

autumn fair 041

autumn fair 039

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…

autumn fair 001About 12 hours later! Whew!

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.


Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.

4 thoughts on “My Lupus Story Part I:The Wolf Bites

  1. Thank you for being so brave to tell your story. Until I read your article I had no idea what lupus was. I’m sending you lots of good luck and positive thoughts for your continuing treatment and medication management!

  2. Thank you, I appreciate the comment. I don’t consider myself to be brave. I just knew that when I was told I had Lupus there was no way I was going to be seen as an ill person, the sort who wallows in their condition and seeks sympathy. But I also knew that people needed to be educated about it which is my aim here. Anyway, it may have made it impossible for me to continue as a teacher but it has meant I have rediscovered my love of needle crafts and now have the time to do them! Every cloud and all that!

  3. I am happy that you posted this! This happens to me and I have had the hardest time finding others whos lupus has done this to them! My mother also has lupus but she doesn’t have the weird swelling like I do!!!!

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