My Lupus Story: The Prequel


I promised updates to complete the picture so here is a run down of  what happened to me that concluded with the diagnosis!

2010 was not a brilliant year health wise as I was generally feeling ‘under the weather’- a typically British way to say feeling rubbish but nothing specific! In February we travelled to Exeter for the weekend as a friend was celebrating her 50th birthday with a Ceilidh and supper. We were booked into a hotel for the weekend. In the week prior I had been getting heat bump type rash, and also having to do a few loo dashes! Over the weekend away it became much worse but I was determined to enjoy myself especially as I love dancing!

In the evening I forced myself to join in the dancing and dragged myself around the floor with legs that felt like lead weights. None of this was like me at all-  normally super-fit and healthy! I felt miserable but put it down to work load fatigue and the time of year.

Fast forward to April that year and the Easter holiday from school. We were doubly excited as we had a family break planned to Amsterdam and were replacing the family car. I was particularly pleased to be  going to the Netherlands at that time as it was an opportunity to visit the bulb fields. We were booked into a lovely apartment and had great plans to visit previously missed sights and to once again do the local thing by hiring Dutch traditional bikes to ride around the city.

OLYMPUS DIGITAL CAMERAFrom previous trip. Vondelpark!

The day before travelling I had started with a head cold but have never been one to moan about such things so made sure I packed paracetamol, eucalyptus oil and plenty  of tissues for the trip. First day there and it was clear my cold was going to develop into something more akin to flu but I was still not going to let it interfere with the holiday. That’s when strange things started happening- I kept falling over! One minute I was walking along, next minute I was on the floor!  I was not really aware of how it happened, it was a case of now you see me now you don’t! On several occasions people stopped to help and I have one memory of coming out of the Resistance Museum which in itself had been an emotional experience, and finding myself outside the building , collapsed in a heap and sobbing! Chris had to stride out in search of some strong pain killers as I had twisted my ankle and we retreated to the nearest bar for a medicinal ‘drink’! This was very much how our 4 days went with me falling over and having to spend at least half of each day in bed! We never got on our bikes nor manage a trip to the bulb fields.


Feeling rough but smiling!


jill ams 2010 015

Back at home I finally shook off the bug, we collected the ‘new’ car and it was back to work. As the weeks progressed I was suffering more and more from swollen hands and feet with excruciating pains in my joints. It felt familiar. Several years before I had a virus (parvo virus, caught from one of the boys) which had resulted in me having reactive arthritis. I had been prescribed strong anti-inflammatory drugs and it had eventually gone after about four months. It is a known reaction to that sort of virus so I thought I had the same again, knowing that it was something that could return. Whilst  I was in alot of pain I was not worried as I was sure it would go as it had before so dosed myself with ibruprofen and carried on.


One day at school a colleague asked me how I was and I realised that I was two months into the new bout of ‘reactive arthritis’ and feeling worse not better and this was highlighted further when a young child held my hand and the pain brought tears to my eyes. A trip to the GP brought a new prescription  for stronger anti inflammatory drugs, agreement of the reactive arthritis diagnosis and precautionary blood tests. Two weeks later I was sat back in front of my GP being told the tests indicated SLE not arthritis and that I needed to be referred to a consultant. I was taken aback as I had been researching autoimmune conditions such as arthritis and had read about Lupus (Systemic Lupus Erythamatosus to give it it’s full name- SLE for short)  . I was worried. I was told to take it easy, continue with the anti inflammatory drugs and wait for an appointment with the consultant.

Read my post ‘The Wolf Bites’ to find out what happened next!

PS I am pleased to report that during a return visit in 2012 I was able to see the bulb fields and did not fall down once!


I took large shoes in preparation for  swollen feet…


Beautiful tulip fields!

 Here is a link to the LUPUS UK page on ‘signs and symptoms’ so you can get an idea what a Lupus patient has to deal with on a daily basis. Click on the butterfly.



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: The Prequel

  1. Hi Jill! I love reading your story and find it fascinating! I know you have had a really rough time,but hopefully things are improving for you! Try and keep occupied and keep active as long as you can,it must be hard sometimes but stick at it! Thinking of you! Love Gladys X

  2. Thanks Gladys. I get along okay. My mission is to make sure more people know about Lupus, I have realised now what I can and can’t do and really quite enjoy my life again! Different but new and exciting!

  3. Well done Jill!! I am 29yrs old and have spent the last two years learning to live with Rheumatoid Arthritis & Vasculitis. I know only too well hard it is to live with “swollen feet” sized shoes in the wardrobe, just in case. Thank-you for sharing your story x

    • Thanks for that! I count myself lucky that I was older when the Lupus struck (48 at diagnosis) – well not exactly lucky but you know what I mean. I have a ‘big’ set of clothes and a ‘slim’ set of clothes. It can be a struggle can’t it?! But hey ho, I count my other blessings. Wouldn’t do to wallow. Take care of yourself. In my humble opinion sharing our experiences leads to others gaining a better understanding and that’s what I am aiming for!

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