Monique's story

Monique in a supermarket shopping

When I was 25 I went to see my family in the Caribbean.

This was a trip I regularly made and loved going on. But it was soon clear things weren’t right. I was depressed, I’d lost my appetite, and my energy levels were low.

My relatives were concerned and took me to a hospital for some tests, but nothing was discovered.

One day we went to the cinema and I became very unwell. When the movie was finished, I couldn't put my feet on the ground, I was in excruciating pain. It was like pins and needles multiplied by 1,000 times. I had to be carried out of the cinema. It was scary.

This was back in 2007 and shortly after I got home to London, I went to my local hospital for further tests. This led to a diagnosis of lupus.

I remember thinking, 'How can I get this? I'm young, fit and healthy'. It was a big adjustment for my family and I.

A major problem over the years has been fatigue. I have to plan the week ahead. Fatigue is always there. Sometimes you don't have to be doing much and you get this overwhelming need to sit or lie down.

I try to sleep and eat properly. I've cut out red meat and swapped it for fish, chicken and vegetables. I also drink lots of water.

Last year I returned to work after some time off because of my lupus. I work for the Deaf and Disabled People’s Organisation (DDPO).

I was quite anxious going back to work. I am confident and outgoing, but I found it quite daunting. My body is different from my pre-lupus days.

Through the Access to Work scheme I was provided with an adjustable chair and desk, and this made the world of difference.

It helps to be open about your condition, so you can get the support you need and are entitled to. Being open and talking about my condition has been a positive for me.

I set myself SMART goals. This stands for specific, measurable, achievable, realistic and time bound. So I used this when thinking about what jobs to apply for, location of workplaces, hours I could work a week.

It’s important to push yourself a bit, but not too much so that it’s not possible.

It has taken me 13 years to reach this point; and it has not been easy. Returning to work has been a personal achievement for me, and for many returning to work is not an option due to their condition and the symptoms.

I am still very much a work in progress and after 13 years I am still discovering the limitations of my body because of lupus and arthritis. If my journey gives one person hope that their situation can change, given time, I would be happy.