Caroline's story

Hi, my name is Caroline Hill and this is my story. In June 1996 I was a happy, healthy 30 year old woman, I ran a wine bar, had a good life, worked long hard hours and played hard too. I loved water sports, the beach and football. A day out that summer led to my life being totally wrecked, I went to the beach on my day off to go surfing, by 10pm that night I was in my local hospital covered in what looked like a bad case of prickly heat! Over the course of the next few weeks I went from bad to worse, I could not find the words to even begin to describe how ill I felt; rash, sick, weak, burning skin, dry mouth, eyes like sands been kicked in them, so weak, no energy.

I lost weight, my bones and joints hurt, lying in bed was like lying on rubble. This went on for weeks and no one seemed to take any notice of what I was saying or take me seriously. I could ‘t work, I could not get out of bed without help. I was being treated with huge amounts of oral steroids just to dampen down the condition.


My GP at that time was wonderful, always doing her best to refer me to the right people but after trips to two of our main hospitals they more or less dismissed me and told two completely different stories by both consultants. I was devastated, extremely confused and worried, what was wrong with me, I was ill but none of the professionals seemed to be able to help. I felt like giving up, but my partner and my GP (Dr Ingoldsby) wouldn’t let me give up, they new me and new things were just not right.

After nearly 14 months of living like this and several appointments with different consultants, my GP referred me to the Louise Coote Lupus Unit, where I was treated with speed, respect, kindness and an understanding that simply brought me to tears. I was diagnosed by Dr Khamashta, I have Lupus and photo sensitivity, a four year battle for a diagnosis but by 1999 I new what was wrong with me now but the days where long and I felt lost, unable to do the things I loved, I could not go out in the sun for any length of time, unable to work and some days unable to even get out of bed. I turned in ever decreasing circles of despair, I would make plans in my head but the body didn’t want to know and so my life went on and on like this.

September 2001, I managed to break my ankle and had to stay in hospital, so now in plaster, with pins and plates and the lupus playing me up, I hit the bottom with a bang, I didn’t know where to turn. I love music and my favourite (no laughter please) is Meatloaf and Patti Russo, they just so happened to be on tour in the UK, my partner got two tickets to go and see them and strangely enough they where the last concert I went to see in April 1996 just weeks before I started to feel ill, somehow had turned full circle, but still I felt so poorly – but I wanted so much to go and see them again and not feel ill and tired and have to come home, I just wanted to go and be normal.

So a plan was hatched in my mind (I had no idea that just going to see Meat and Patti in Plymouth that day was going to be the beginning of what I have now) only a few weeks out of plaster and feeling tired and weak I thought if I could become a little fitter, I could cope with going to the concert. So I told no one, I found the courage to walk into the local gym, where I shook and trembled with fear but managed to splutter out the whole story of Lupus and just wanting to feel well enough to enjoy Meat and Patti sing again, could they help me as I had only three months to go.

They were great, I got a programme, help & encouragement. I was so weak I only managed a two minute walk on the treadmill to start, I was never made to feel silly or useless and I was encouraged the entire time. It was brilliant, I could use the gym, it was cool, air-conditioned, the gym clothes where all cotton and loose. Gradually I could do more and more, I still had to force myself through the Lupus, it was still difficult even getting up and it was very hard, but slowly the old spark that had been buried for so long was there again in me. I loved the people at the gym they helped me so much and slowly became my friends (I could actually mix with people again).

Before I knew it I was going to the gym four times a week, my family and friends where amazed and I felt so good. I still had the bad dark days, but a brand new will grew in me to fight back. The stronger my body, the stronger my mind and I wanted my life back, I was determined to get it.


Twelve weeks went and the concert day arrived, we went and I felt great. I was inspired by Patti Russo and in one mad moment decided I was going to make a difference to people’s lives in some way, just like Patti Russo and her music had done for me. After a lot of soul searching, I realised what the gym had done for me and then I knew what I would do, help people and become a personal trainer. So, I booked a course, I had loads of doubts, I argued with my demons. Could an ill person do this, could I become a personal trainer?

I did the Fitness instructors course through WABBA and they were brilliant, I struggled a lot but I didn’t give up. After two attempts of trying to attend the course and not making it because I was ill, I finally completed and passed the course in time to celebrate my 40th birthday.

Now I have a part time job at 1-2-1 fitness, I do get to help people and I can see the difference exercise and a bit of understanding makes. Angelo, my boss is great he has put soft lighting and dimmer switches in the gym to help me. He gave me the shifts that suited my condition best and the support he gives and his big smile makes all the difference on the bad days. I get so much help from our clients too.

My local job centre has been amazing, don’t be frightened to approach them, they are there to help and they really do. I now look forward to each day and don’t let my bad days take over! Ultimately, you have to look inside yourself to find that inner strength but I wouldn’t have got this far without my partner Julie, my family, Ang and my friends.