I didn’t walk for five years

From ‘The Weekly News’, September 22

by Bill Gibb, Health Reporter 

Vikki George tells how a battle against ME left her bedbound in a darkened room and only able to eat baby food.

Crawling to the bathroom, having to stop every few feet to rest, might not sound like much of an achievement.

But when you’ve lain in bed in a room with blackout blinds and been unable to move your limbs, it was a huge success.

I spent five years bedbound and unable to walk after being struck down by ME.

Through it all, though, I remained convinced I’d get better, boosted by the letters of support I got from fellow sufferers.

However, like many of those affected, what made it worse was the attitude of those who reckoned I was either a malingerer, or just needed to pull myself together.

And I even had a doctor say that ME was something people had who didn’t want to grow up and face reality!

I’m 22 now and, thinking back, the very first indications something was wrong came when I was nine.

Really went downhill

I had a standard school vaccination and, for the next couple of years, although I couldn’t exactly put my finger on it, I just didn’t feel right.

I was easily tired and got a few colds, and I think that may have been the earliest stages.

It was when I got glandular fever at 11 that I really went downhill.

I used to swim all the time, do tap and ballet dancing, and be really active. But I just had no energy at all, and had constant migraine headaches, as well as stabbing pains in my head.

When I wasn’t well, I couldn’t even get off the couch.

Over the next few years, my mum and dad constantly had me at the doctors.

Diagnosed

My skin was sensitive to the touch, and I developed real problems with both light and sound.

My dad has quite a loud voice and he’d have to almost whisper to me.

I had to keep the blinds drawn in my room and wear sunglasses whenever I ventured out.

Over the years, I had blood tests and MRI scans, and they either showed up fine, or were inconclusive.

Finally, though, just before I was 16, I was referred to a paediatrician and, within one hour, he told me I had ME.

It’s one of those conditions that’s diagnosed really by ruling everything else out.

Hearing the news was the strangest sensation. I half-wanted to jump around the room — if I’d been able to — and shout that at last I knew what was wrong with me.

That was a wonderful relief.

On the other hand, that joy was tempered by the fact I knew there was no cure, no pill I could take, no magic wand which could be waved to make me better.

Since then, I’ve also reflected on how my life could have been different if I’d been diagnosed earlier.

I’d had this for over four years and, if I’d known more, I’d have done things differently.

For instance, I’d have rested more, and not pushed myself and ended up just making things worse.

I had to sit my GCSEs at home in Little Bookham, Surrey, with rest breaks to let me get through them.

I was pleased to pass six which would let me go on to university or college but, within two weeks of being well enough to get back and start my A-Level studies, I went downhill fast.

I had to give up — and then began my five-year nightmare.

At 16, I became bedbound.

I had constant nausea and vomiting and, at my lowest point, I could only be fed baby food by a spoon. I relied completely on my parents.

I had blackout blinds on my room windows, as I couldn’t bear light.

I was so utterly shattered, I could hardly even speak.

It took a huge amount of effort just to summon up the energy to take a deep breath and get a few words out. And that was barely a whisper.

Severity

For periods of every day, I’d feel my limbs paralysed.

I’d find myself in an uncomfortable position and, if my mum and dad weren’t there to roll me over, I’d have to lie there until some strength came back to turn.

I couldn’t even sit up. I think on a scale of one to 10 of severity of ME, I must have been a nine and a half.

There are those who you could class as a 10 who end up having to be tube-fed, and I think I must have come-close.

Obviously, my parents did everything they could and I saw many doctors.

The one I remember most was the one who talked about people having it not wanting to grow up and face reality.

That was just one of his choice sayings, and I think my parents showed admirable restraint in not throwing him out!

One of the turning points came when I was assigned an ME team to look at my case and help.

The physiotherapy they arranged started to make a difference.

They got me to do simple things, like sitting on the side of the bed for 10 seconds.

I had to have a mirror placed opposite, so I could see myself.

I didn’t realise I was slumping sideways, not sitting straight.

I had splints put on my ankles to help keep my feet straight.

I crawled to the bathroom and, finally, last year, I took my first steps in five years.

It was with crutches and was just a handful but it felt so good.

One of the things which kept me going was that my situation was highlighted on a website run by a charity for young ME sufferers.

As a result, lots of people wrote to me and, hearing my mum and dad coming up the stairs with the letters, was the highlight of my day.

It started some friends and me thinking and we decided to set up our own website.

It’s called PostPals, and we send and encourage others to send "happy post" to chronically-ill children.

We were given a Prince’s Trust grant and, more recently, help from BBC Children In Need.

It’s all done from my bedroom, of course, which looks like a cross between a Post Office and a toy shop, as we send about 150 letters and parcels of  gifts we’ve bought every month.

Confined

When you hear the stories of some of these children, many struck down by cancer, it puts my own situation in perspective.

I’m confident I’m going to get better eventually. Many of these children never will, so how could I feel sorry for myself?

Although I’m still largely confined to my room, I’m making slow progress.

I’ve had little milestones, such as getting out in a wheelchair and, strange as it might sound, enjoying feeling rain on my face for the first time in five years.

People’s reactions to me can be frustrating, though.

There are those who still think people with ME are some sort of malingerers.

I feel like holding up a report by the Chief Medical Officer from a few years back, stating it was a neurological condition.

I’d love to see better awareness and earlier diagnosis.

As far as my own health is concerned, I have faith that, one day, I’ll be well again, and get to do all those things I’ve dreamed of doing.

• The ME Association, www.meassociation.org.uk helps those affected by the condition, and campaigns on their behalf.

• Vikki was helped by the Association of Young People with ME, AYME, through whom she received her letters. The charity can be contacted at www.ayme.org.uk

• For further details about Vikki’s own website, go to www.postpals.co.uk

Advice may not be NICE, says charity

The National Institute for Health and Clinical Excellence (NICE) has just published new guidance on how to diagnose and treat ME.

And it’s called for much closer co-operation between doctors and those affected to reduce misunderstandings and improve care.

However, The ME Association, a leading charity, says recommendations to treat patients with a mixture of "talking" therapies and exercise won’t help many who are too ill to attend sessions.

They believe NICE has ignored evidence that ME is a neurological  condition.

"The NHS will need to spend millions of pounds it hasn’t got to recruit and train new behavioural and exercise therapists," said a spokesman for The ME Association.

Symptoms of ME include feeling tired all the time and muscles emptied of energy after a viral infection, which triggers around 70 per cent of all ME cases.

If you’re concerned you may be suffering from the condition, call ME Connect on 08704 441836. The helpline is open daily between 10am and noon, 2pm and 4pm and 7pm to 9pm.

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.