Respect it but don't let it rule your life

She can still walk, work, does not need a wheelchair and lives a normal life in Downley, High Wycombe, with her husband Robert.

This is not the typical preconception of an MS sufferer; popular belief is a positive diagnosis means the end of a patient's normal life.

This is one of the misconceptions that MS Awareness Week, running from April 22 to 29 is hoping to destroy.

Belinda was officially diagnosed with the disease in 1996, but believes she has been a sufferer since 1989 when she got into a hot bath but could not a feel a thing.

She suffers from a form of the disease that subjects her to attacks every few years, each one leaving her slightly worse than the one before.

The main symptom of her personal MS is fatigue.

This has forced her to convert her working pattern from full to part-time at a pet shop, but this is the one concession she has made to the disease.

As she herself says, "you must respect it but not let it rule your life".

Belinda says Robert has provided her with a lot of strength in living with her condition.

She said: "He has been brilliant. If I had not had his support I would not have coped as well.

"When I was diagnosed I went to his work to tell him and he just said 'so what, nothing has changed, you know why you keep feeling so tired but I still love you and whatever happens we will face it together'."

She is critical of the health authority for not providing enough funds for specialist MS nurses and of the National Institute for Clinical Excellence (NICE).

NICE will be laying down national guidelines for the prescription of Beta interferon which can help sufferers.

She said: "At the moment NICE are anything but nice.

"What they do not realise is that while they are stalling, people that needed it a year ago have now gone into secondary progressive (a more serious form of the illness).

"It seems so unfair that we have a drug that helps and they will not fund it.

"The specialist MS nurse is part-time.

"She has a lot of skills and experience but she has to work part-time.

"The High Wycombe branch of the MS Society has given money to fund her so the Health Authority are not giving much money at all.

"It seems that people with MS need to really fight to get everything we need."

Belinda often suffers some pain in her muscles, which she describes as a burning sensation.

The only thing that can help alleviate it is cannabis, which she says she has used but is to scared to do so anymore because of the legal risks.

She added: "It was the only thing that touched the pain.

"It is absolutely stupid that we cannot use it.

"There is nothing else that works anywhere near as well it's absolutely ridiculous."

Another sufferer who agrees with Belinda is Paulene Nash, 60, of Loudwater.

She said she would love to become involved in clinical trials into the drug but would be too scared to ever try it otherwise.

She added: "I was talking to my neurologist and he said 'don't think you are going to sit and smoke a spliff'.

"I would like to try it in tablet form and I think it could work for me because I need something to damp down the pain. But I don't want to take cannabis off the illegal drugs list."

Paulene was diagnosed with MS about 20 years ago and is also able to carry on a fairly normal life, although she was forced to quit her job with Bucks County Council.

She shares Belinda's views on the nurses and is adamant that more nurses can help, particularly newly diagnosed patients.

She said: "If you are newly diagnosed it's difficult to come to terms with and the nurses can help.

"If MS was a killer disease we would pull out all the stops and everyone would want to treat it more.

"I don't think the NHS is doing anything to help MS sufferers.

"It has been proven that Beta interferon can help sufferers."

Beta interferon is prescribed in the county on a limited basis in line with other areas.

"It's because it's expensive and they think that people do not die from this disease," added Paulene.

Juliette Greenwood is the specialist MS nurse for the adult disability team at Amersham Hospital.

She agrees with Belinda and Paulene's claims that there is a shortage of MS nurses, but admits the health authority has to consider people with other ilnesses.

She said: "There are only 80 MS nurses in the country and I think there should be more.

"People with MS deserve access to an MS nurse but so do people who have had a stroke they need a stroke nurse."

She thinks the future for the health service is to integrate its services, and is critical of the NHS which does not allow people from one area to have access to services and treatment in another.