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Providing care and support in tough times

Monique was 25 and was visiting family in the Caribbean, where she should have been having the time of her life.

Even though Monique was young, sociable and loved life, she wasn't enjoying the trip to the beautiful island where her parents grew up. In fact, she was depressed, had lost her appetite and her energy levels were low.

Her concerned family took her to a hospital to have tests carried out, but nothing was discovered.

One day later that holiday while Monique and her family were at the cinema, she became very unwell.

Monique said: "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.

"Sometimes you don't have to be doing much and you get this overwhelming need to sit or lie down.""I had to be carried out of the cinema. It was scary."

This was back in 2007 and short after her return home to London, Monique went to her 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 me and my family, to be my age and to be diagnosed with something as serious as lupus."

Worrying times

Monique has had some tough times since her diagnosis.

Monique developed lupus nephritis, which is an inflammation of the kidneys that can affect people with lupus. It's potentially a serious problem and Monique needed chemotherapy to treat it.

"Kidney involvement can happen really quickly," Monique said. "Chemotherapy isn't something to be taken lightly, but I couldn't consider for too long whether I would have it or not.

"It worked for me, but I know for others it hasn't been so successful."

Planning ahead

"How can I get this? I'm young, fit and healthy."Another difficulty that has affected Monique has been the fatigue brought on by her condition. She said: "I have to plan the week ahead. I can only really do two to three things a week.

"Fatigue is always there. However you structure your time, you have to do it around fatigue.

"Sometimes you don't have to be doing much and you get this overwhelming need to sit or lie down."

Healthy lifestyle

As well as planning her time carefully, a healthy lifestyle is important for Monique. She said: "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."

While Monique has found these changes to be beneficial, she finds it hard to always keep on track with what she eats.

She said: "I'm literally having to change food habits of a lifetime, which isn't always easy, so that in itself can bring on depression as I think about 'my past life' compared to how I am now. It's all very much part of a grieving process, which doesn't have any timescale of a beginning or end."

Support

Monique gets support through the Enfield Lupus Support Group, which she helps to run. She has made great friends through the group in north London.

"The support group has been extremely beneficial to help with depression," she said.

"I go for coffee with the lupus ladies. There are little things we share that can really help. Everyone's symptoms are different. Sharing information can really help."

At the support group, members share experiences and problems with people who really understand. Meaningful practical and psychological advice is offered and there is real compassion, warmth and friendship.

Feedback from new members supports Monique's opinion that the group can be hugely beneficial to people.

One person said: "After the first meeting I attended, I got in my car and cried with relief. But I wasn't sad, I was happy. They knew what I was going through."

This response isn't isolated. Another person who has lupus said after her first meeting: "I've finally found a place where I feel understood and where people 'get it'."

A feeling of acceptance and belonging at a time in people's lives that can be confusing, isolating and scary is extremely important.

Monique said: "Lupus has affected my social life. The condition can have that impact on social circles, particularly old social circles from school or something like that, with people who don't have lupus.

"Sometimes the thought of going out is really appealing, but then I think 'well, I'll have to have a bath, get dressed, get ready and then call a cab' and all that can seem like too much and it puts me off.

"Then I cancel and that can annoy people, and so people stop asking you to social events.

"With the lupus ladies, we all understand that if someone needs to cancel it's for a good reason.

"I don't take anything for granted now. This condition has really taught me that."


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