‘Illness taught me patience’

Afew months ago,I was fit and busy, dashing between Manchester and  London for my work with a  cancer charity, my private practice in Cheshire and being a magistrate.

Since then, I have learnt many things, but patience is probably the most important of these.

It started with a headache, weakness, steadily reducing muscle power in my legs and pins-and-needles in my hands, feet and tongue.

Two days in, a doctor in A&E diagnosed ‘migraine – and you are panicking’. I challenged this opinion, but it is difficult to argue when you feel so ill, so my husband Mark and I left the hospital.

Over the next two days, my legs became so weak I had to pull myself up the stairs using the banisters. My head and back raged with pain, and sleep was clouded by horrible dreams.

When I woke up in pain and feeling I had no strength left, Mark called an ambulance. The crew asked if could walk so I stood up, and immediately my legs buckled under me.

As the doctor in A&E examined me, I couldn’t even focus on what he was doing. I felt as if every tissue in my spine had been superglued together.  

The diagnosis was Guillain-Barré Syndrome. I was relieved to have a diagnosis, but I had no idea what lay ahead.

My condition deteriorated before it got better. I lost about 80 per cent of my lower limb function. I was so weak that I became breathless when speaking and had trouble swallowing. The raging pins-and-needles continued, and later I had facial nerve palsy.

It was hard to cope with being unable to do so many small things we take for granted, like turning over. I got carpet burns from using my elbows to move myself in bed! There have been moments when I’ve had difficulty washing, dressing or even eating.

I was lucky not to need ventilation. At one point there was a dip in my spirometry reading, and that was very scary. The intensive therapy nurse came up several times to see me and spent time talking to me. This kindness was greatly appreciated.

I tried to look at the funny side – particularly when I hallucinated while on morphine! Many people have to put up with worse, and this illness has given me some insight into how they must feel. Longing for more fresh fruit and vegetables in hospital meals, for example.

And the indignity of having to use a bed pan. It digs in, especially when you lose a lot of weight.

As a physio, I have my knowledge to help me. But sometimes I feel that, much as I try to strengthen and stretch, the body will only repair at its own rate. You find out how fast you can go by trial and error.

I am now having physiotherapy at home, and I really appreciate all the help. I know how hard it is to treat another physio! But though we know what we should do when we are patients ourselves, it is nice to have someone reassess and give motivation. The hardest part is sometimes doing less rather than more. fl

What is Guillain-Barré Syndrome?

GBS is an inflammation of the peripheral nerves that connect the brain and the spinal cord with the sensory receptors and muscles.

About 1,500 people in the UK develop GBS each year. Four out of five make a full recovery within a few months to a year. Some develop a chronic form, but it is rarely fatal. Treatment may include immunoglobulin, blood plasma exchange and physiotherapy.

The Guillain-Barré Syndrome Support Group is at www.gbs.org.uk, serving the UK and Ireland. The charity’s helpline at 0800 374 803 is staffed 24 hours a day.