From Candis magazine, April 2016.
Sue Hardy, 53, from Hertfordshire tells why the ME Association is campaigning for change
When Sue Hardy had an operation in November 2012, she was surprised at the toll it took on her health. I never really got over it and felt fatigued all the time. ‘Swimming through treacle,’ was the phrase I used to describe how I felt,” she explains. “I would try to cover it up by sleeping all day so I could act normal in the evening, as I didn’t know how to tell my family what was wrong.”
In January 2013, Sue, now 53, was sent for a variety of tests to find out why she was feeling so unwell. “I was hoping they would be able to find something and make it all go away.”
However, after her blood tests came back negative for other conditions, in April 2013 Sue was diagnosed with ME – also known as myalgic encephalopathy or chronic fatigue syndrome (CFS) – a long-term illness of uncertain cause, which causes severe fatigue alongside a range of neurological symptoms and muscle pain.
“I told the consultant not to be silly – of course I didn’t have ME,” she remembers. “Despite being a nurse with over 30 years’ experience there was little awareness of the illness and my knowledge extended to the widespread belief from the 80s that it didn’t really exist. It took the consultant an hour to convince me it was a real illness.” Sue was encouraged to go away and learn about the condition. “I started to read about ME and suddenly everything just clicked into place.”
Sue’s GP referred her to a chronic fatigue clinic in St Albans, but she was turned down as her BMI was deemed too high. “One of the issues with ME is it’s difficult to exercise, so I’ve found it really hard to get the weight off, which is what they said I had to do to be seen. I was referred to a psychiatrist and given pain relief to manage the joint and muscle pain, but it was a bit of a blow not to be able to access other treatments, such as graded exercise therapy (GET) – in which physical activity is introduced slowly and gradually increased.”
In August 2013 Sue faced her greatest disappointment when she was forced to seek ill-health retirement from her job. “It was devastating as it was a career I had enjoyed for 33 years. I lost my income and my status in society, which has been hard to adjust to.”
Sue’s condition has also had a huge impact on her social life. “My symptoms – which include fatigue, muscle and joint pain and poor balance, concentration and memory – fluctuate, so I often have to cancel plans. I also haven’t been able to visit my in-laws in Manchester for two years because long-distance travel is very hard.
“I now have to stick to a rigid routine, which involves lots of time resting, and I feel like I have lost a lot of freedom. It has been hard for my friends, husband and children to understand.
“ME doesn’t get a lot of priority within the healthcare sector as it’s an invisible illness,” says Sue. “Many professionals aren’t aware of the symptoms, yet the earlier they understand what’s wrong with you, the sooner you can do something about it and perhaps the more likely you are to recover.
“It can be a struggle for people with ME to get a diagnosis and to get the support, benefits and treatment they require and there is still a lot of stigma surrounding the illness too. It’s so very important that these people are able to get the help and support they desperately need, which is why the work of the ME Association is so essential.”
THE ME ASSOCIATION – THE FACTS
* ME is a neurological disorder affecting 250,000 people in the UK. Symptoms include a flu-like illness that doesn’t go away, extreme fatigue and hypersensitivity to light and noise.
* Research will one day lead to the discovery of unique biomarkers and treatments. In the meantime,
* in the absence of a cure, sufferers rely on coping strategies such as relaxation techniques to get by.
* The ME Association is involved in the research and in helping make the UK a better place for people with ME.
* Visit meassociation.org.uk to find out more information.
BIG GIVE UPDATE
The £13,109 raised by The ME Association will help launch a ‘Diagnose ME Quickly’ campaign to promote the importance of early and accurate diagnosis before the symptoms worsen. It will also help to produce materials for GP surgeries and host
a seminar.