Last updated 13:40, Wednesday, 24 September 2008

There is a sparkle in Tracy Elliott’s eyes as she reminisces about this year’s summer holiday, when the family spent three weeks on a campsite in France, playing cricket, table tennis, boules, and swimming in the sun.

Tracy Elliott with her husband, Tony

• Photos: more pictures of Tracy

It certainly sounds idyllic, but for the mum of four it was an extra special experience, because it was the first time in years she had felt strong enough to join in and enjoy quality, fun time with her children; Joshua, 15, Robbie, 11, Bruckman, 8, and three-year-old Dharma.

Tracy, 38, started feeling ill 11 years ago, yet it was only in February of this year she was diagnosed with ME.

Sitting in her Carlisle home with husband Tony, she recalls: “It started when I was pregnant with my second son, when I had dehydration and sickness.

“I then had throat problems and pains and was basically exhausted. It was a feeling that didn’t go away. I’d often lie on the couch all day. I was too tired to do housework or play with the kids. I didn’t even have the energy to climb the stairs. I’d avoid going to the toilet for as long as possible, simply because I couldn’t face going upstairs. It took all my strength just to keep my eyes open.”

At first Tracy’s tiredness was put down to her being a mum of two, and then three when Bruckman came along. She found some friends lacked sympathy, and simply thought she was lazy.

Tracy knew it was something more serious, yet despite visits to the doctor a couple of times each year, ME was not considered.

She was repeatedly tested for thyroid problems, anaemia, even the early menopause, but they were all discounted.

And it wasn’t just the physical symptoms and the exhaustion that were making life almost unbearable. The fact Tracy spent years not having her condition confirmed took its toll mentally, then there was the guilt she felt at being unable to do things with her children like a normal mum. “It makes you feel like you’re going loopy, because I didn’t know what was wrong,” she says. “And because I just wanted to sleep all the time, I couldn’t play with the kids. Even if they read to me after school I’d just fall asleep.

“And it wasn’t just the physical side; it also causes you to lose confidence and feel depressed. At one point I was given anti-depression tablets, but they made me feel worse, like a zombie.”

For a few years the family moved around because of Tony’s football career, which made things harder.

But through it all Tracy could always rely on his support. The couple hold hands across the table and Tracy smiles: “Tony has always been there. I would have really bad mood swings, because of it and I suppose there had been a bit of jealousy too, because Tony could have a fun time with the kids. But he took it. I know I wouldn’t have got through it without him.

“I’m sure if someone didn’t have such an understanding partner, a marriage could easily break down. But he’s always believed in me and we have got through it together.”

For ex-Carlisle United keeper Tony, also 38, there was never any question he would give up on Tracy, even through the hardest times. “The thing is, we are that close. We are not just husband and wife, we are best friends,” he says emphatically. “We always talk about things and do everything together. And she’s always believed in me, so it works both ways.

“I am the opposite to Tracy, I have so much energy and drive, and can last the whole day without resting, the opposite to how Tracy was. But I have never ever given up on her, and I never would.”

But there’s no doubt it was frustrating for him too. “It was hurting me to see Tracy in that way. I always thought it was ME, but it was just so hard to get it diagnosed. We tried and tried to get a diagnosis, and had blood test after blood test.”

It was in Autumn 2007 that they finally had a breakthrough. A woman Tracy knew at the toddler group, who has ME, said it sounded like Tracy had it too. By chance she saw a new doctor at her surgery, who suggested she go to a specialist clinic in Keswick. “They asked questions there and said there’s no doubt it’s ME. When we left, Tony put his arm round me and I felt such relief, I just broke down. I finally knew that I wasn’t going loopy and there was a name for what I had.”

Tracy now goes to the Carlisle ME/CFS Support Group meetings, held twice a month, at Wigton Road Methodist Church. “It’s amazing to speak to other sufferers, to know it’s not just me, and to get advice if I need it,” she says. “I have a good routine now.

“All the kids help. Josh has always helped, and even Dharma likes helping to clear the table. When I used to do the school run, I would come back and just get into my pyjamas. I had the excuse that Dharma needed her sleep, because she was little. But now I don’t have to do that.”

Although Tony still travels for work – he is on the academy staff at Liverpool FC and coaches the England futsal team, among other commitments – the family are settled back in Carlisle and Tracy is getting her life back on track.

The couple now want to help raise awareness of an illness that is still so misunderstood, and often takes a long time to diagnose, causing misery for those affected.

“There’s a lack of understanding about the illness,” adds Tony. “There’s no drug or operation, it can’t be cured. People need to become more aware of it. And yes it’s about people with ME, but there are also the carers, people like me, who it affects.”

He plans to raise funds for the support group in the near future through his work.

In the meantime, Tracy is slowly getting her life back on track.

“There’s no treatment for ME, but what you can do is treat the individual symptoms,” she explains. “So I can use painkillers for my throat or aches and pains. I am on a more even keel now. I listen to my body more, instead of pushing myself and getting too tired, or not doing enough and sleeping too much. I do the three trips to school now, and the school routines help. I can relax during the day, but I don’t sleep during the day.

“I talk to the children more, and listen to them reading. My confidence has come back. A year ago I didn’t feel like this. It’s still a struggle but it’s definitely getting easier.”