My Experience with Lupus has been a Whirlwind

Lupus Walk UK - The Hibbs Lupus Trust

Thank you to Alice for sharing her story.

Alice - The Hibbs Lupus Trust 1My experience with lupus has been a whirlwind. I had never heard of lupus until 2013. I was a sports coach and a full time special needs teaching assistant. My hobbies included playing sports, socialising with friends and going on activity holidays.

6 months after the best day of my life, my wedding day, our lives turned inside out. I was taken by ambulance with suspect meningitis to hospital. After a lumber punch, xrays and lots of blood tests I was diagnosed with meningitis, sepsis, a blood clot on my lung and double pneumonia. After being under the critical care team and stays in 2 different hospitals over Christmas and New Year, I thought after some rest and tlc everything would go back to normal. How wrong was I!

At the second hospital, they did extensive testing and noticed an abnormality in my blood results. Although I was being referred to a rheumatologist, I thought nothing of it. As the year went on, I started getting aches and pains in my joints and struggled to move when this happened. November 2013, I had my first real flare and that was scary. I woke up at 6.30am and felt fine, went back to sleep for half an hour, then woke up with the alarm, I couldn’t move. I was so frightened. This had never happened before. We contacted the hospital, and with the symptoms and the blood abnormality, they suggested that it could be lupus. However, my bloods at the time were normal.

I was referred to Professor Gordon and City Hospital, Birmingham. Straight away, on the 2nd January 2014 I was diagnosed with lupus and Sjogren’s syndrome. Phew! I had a diagnosis. I was so happy. I was sent away with steroids, hydroxychloroquine, azathioprine and amitriptyline, plus some leaflets.

Now I did what a lot of people do and I Googled lupus! Now, that was a big mistake. According to doctor Google, I was going to die within 10/15 years!

Alice - The Hibbs Lupus Trust 2I now knew that November was a ‘flare’ and it was still attacking my body 2 months later. So along with my daily medications, I had IV steroids. My word, did I crave food. Crisps, cake, chocolate, anything sweet and bad for you. After 3 months I had put on 3 stone due to my inactivity and feeding my cravings. So along with putting on weight, I was also suffering from other side effects from the medications. My face turned into a moon, I couldn’t recognise myself in the mirror (I still can’t, 2 years on), my hair was coming out and I was itching all over. The joys of lupus!
Now into my third year of lupus, I’m still on steroids, although I’m finally under the magical 10mg! I’m now on my third immuno-suppreser, mycophenolate mofetil.  Azathioprine and methotrexate couldn’t control it unfortunately. I also still have bad flares where I’m bed ridden. I have to be fed, washed, dressed and toileted because of my lack of movement. During these flares, I take a mixture of pain relief, from tramadol, to gabapentin to oramorph.

When I was first diagnosed I sought out support. I found The Hibbs Lupus Trust and LupusChat on twitter. Both of these have been fantastic support. I’ve gained knowledge, shared experiences and found people who understand. This has been invaluable to me.

I describe lupus as being like the Tazmanian Devil. It comes into your life with no warning, causing mess and destruction that you are left to sort out.

If you would like to share your story, please get in touch!

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10 Comments

  1. Maxine Parker on April 7, 2016 at 19:41

    Hi Alice so sorry to hear your story and the turmoil that Lupus causes. Stay strong my family has also endured this.

    • Alice on April 11, 2016 at 09:25

      Thank you Maxine

  2. Lorna on April 8, 2016 at 22:26

    Lupus is such a mare. I relate to this so much x thank you for sharing

    • Alice on April 11, 2016 at 09:27

      Thanks Lorna x

  3. Li McLoughlin - Yip on August 12, 2016 at 07:18

    Hi Alice, Thank you for sharing your story. Stay positive and there is light at the end of the tunnel. I was diagnosed 33 years ago at the age of 14!

  4. Alice on August 12, 2016 at 08:04

    Hi Alice, Alice here !

    I have been diagnosed about three years ago too. I was and still am a bit of a fitness instructor, I currently teach Spin & Circuit classes. Fortunately I haven’t been affected as badly as you have, but I recognize much of your frustration & pain.

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  8. Lynsby on December 30, 2016 at 04:00

    My daughter has had this Wolf disease for 26 years, she is a warrior!!
    She has gone through, hair loss, plural infusion, septersemia necrotising vasculitis… she is now. very poorly again… I pray for her every day. It is so sad, her life is always determined by the disease…

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