Health

Af­ter decades of vis­it­ing doc­tors who could not find a cause for her ail­ments, Bri­ton Karen Davies, 41, is re­lieved to have the an­swer…

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‘Doc­tors fi­nally found the cause of my ail­ments af­ter decades of ill health’

I gazed through the front win­dow at the chil­dren walk­ing home from school, gig­gling and chas­ing each other. Then I looked around what was my own ‘school’ – the liv­ing room of my home in Ling­field, Sur­rey – and sud­denly felt rather lonely.

was 12 years old and be­ing home-schooled by my mum Pa­tri­cia. Not be­cause she or dad wanted it that way. was just too weak to go to school. Ever since I was a baby I’d caught ev­ery bug go­ing, from measles and mumps to coughs and colds, and this time I had glan­du­lar fever.

I’d missed so much school al­ready and now a doc­tor had signed me off in­def­i­nitely. When I’d be well enough to go back, no one knew.

When we talked about my be­ing home-schooled, my mum said, “It’s eas­ier this way, dar­ling.” But was it? My dad was work­ing long hours as an en­gi­neer for tele­coms com­pany BT. Mum held down a part-time job in HR at a tech­nol­ogy com­pany while teach­ing me and look­ing af­ter my brother.

She’d set me tasks for the day, go to work and then mark my school work when she got home. I was grate­ful she was so ded­i­cated to me – and so pa­tient. She was also a great teacher and I was learn­ing fast.

But that didn’t stop me won­der­ing what I was miss­ing out on. No gig­gling at the school gates, no pass­ing silly notes to my friends in class or swoon­ing over the class heart-throb for me. My friends came to visit, but it wasn’t the same.

For three years I re­mained off school. My glan­du­lar fever would clear up, then come back with­out warn­ing. I was con­stantly run down, and some days I couldn’t get out of bed. I’d lost my ap­petite, too, and dropped to 38kg, which made me feel weaker still.

There is no cure for glan­du­lar fever, but doc­tors had said symp­toms should pass in three weeks or so, with the fa­tigue last­ing up to six months – not three years!

Mum and I went back and forth to my fam­ily doc­tor ev­ery cou­ple of weeks, des­per­ate for an­swers. “It can’t just be glan­du­lar fever,” Mum pleaded. But blood tests came back clear for anaemia, chronic fa­tigue syn­drome (ME) and the like.

Fi­nally, when I was 15, I felt well enough to go back to school. No one knows what changed, I just felt bet­ter and doc­tors said I could go back for my ex­ams. At last things felt nor­mal. Amaz­ingly, thanks to Mum’s ef­forts, I passed 11 GCSE ex­ams. I left school aged 16 and got a job for an air­line and met my hus­band Martin, 10 years my se­nior, whom I mar­ried when I turned 21. I told Martin all about my child­hood and how much I had missed out on. “Well, we have a lot of fun to catch up on!” he said, hug­ging me. My health was OK at that point and fi­nally my life seemed to be im­prov­ing.

B ut soon af­ter, in Oc­to­ber 1995, I started get­ting blurred vi­sion and headaches. If I went to a su­per­mar­ket the flo­res­cent lights would bring on mi­graines al­most in­stantly.

“What on earth’s wrong with me?” I moaned to Martin as he held a cool flan­nel to my head on one of these days. “Maybe I need glasses,” I groaned. I’d read eye strain causes headaches. I went to see an op­ti­cian who per­formed the usual tests and then used a spe­cial ma­chine to look at the back of my eyes. He sud­denly looked very wor­ried. “You need to go to hospi­tal,” he said. “Right now.”

He gave me a re­fer­ral let­ter and I hur­ried to East Sur­rey Hospi­tal,

where I was im­me­di­ately given a CT scan. Af­ter­wards, I sat down op­po­site a specialist. “You have a swelling on your op­tic nerve,” he said. I had no idea what that meant, but I was given steroids to re­duce the swelling and sent home.

I felt bursts of pain in my head ev­ery few days, but grad­u­ally the headaches eased. And af­ter eigh­teen months on and off steroids and pain re­lief they van­ished com­pletely.

M artin and I were over­joyed and soon de­cided to try for a fam­ily. Within a few months I was preg­nant with our son, Alex, now 16. Af­ter so much ill­ness and worry, at last some­thing pos­i­tive.

But in 1998, when Alex was six months old, the mi­graines re­turned. “Not again...” I moaned as I lay in the dark. Alex needed me. I’d hear him cry but Martin would have to go. I was in agony.

It was back and forth to my fam­ily doc­tor again, but still no an­swers. It felt like I was in the film Ground­hog Day!

One day when Alex was six, we went to a friend’s wed­ding. Get­ting ready in our ho­tel room, I picked up my de­odor­ant and tried to spray. I pushed down on the cap but noth­ing hap­pened. I was too weak to make it spray. I tried to brush my hair. But the brush fell from my hands. When I tried to pull on my cardi­gan both my arms were numb.

What’s hap­pen­ing to me? I won­dered. But I tried not to think about it; I wanted to en­joy the day. Back at home, I hur­ried to see my fam­ily doc­tor, who re­ferred me to a neu­rol­o­gist.

“We’ll do a lum­bar punc­ture,” the neu­rol­o­gist said, be­fore ex­plain­ing a hol­low nee­dle would be in­serted into the lower part of my spine un­der lo­cal anaes­thetic to look for ev­i­dence of con­di­tions af­fect­ing my brain and ner­vous sys­tem. It sounded ter­ri­fy­ing, but I went ahead, de­ter­mined to know what was wrong with me.

Try­ing to con­trol my nerves I had to lie on my side for 45 min­utes com­pletely still. I was in hospi­tal for a week, steroids pump­ing into my veins through a drip. I lay awake, wor­ry­ing, in my hospi­tal bed. “When will this end?” I asked my­self.

A specialist ex­plained my spinal cord was in­flamed. I was so con­fused. First mi­graines, then my op­tic nerve, now an in­flamed spinal cord?

“There must be a rea­son be­hind it all,” I said to the specialist. But he looked just as flum­moxed.

Back home life was very dif­fi­cult. At six years old he wanted to run around, play foot­ball and spend long days in the park. But I was just too ex­hausted. Thank­fully Martin was a moun­tain of sup­port.

But one morn­ing I woke up and the pic­ture on the colour TV looked black and white. I broke down in tears. “Martin, some­thing’s wrong with me,” I wept. Was I los­ing my eye­sight now, too? I even be­gan to sus­pect I could have cancer.

“You’ll be OK,” Martin soothed, giv­ing me a hug. But I was scared.

I went back to hospi­tal the next day for more tests – mo­tor func­tion, re­flex, sen­sory and vi­sion tests. I even had elec­trodes stuck to my body to mon­i­tor my brain waves.

Fi­nally, af­ter eight weeks of wait­ing for the re­sults and anal­y­sis, my con­sul­tant sat me down. “We think we’ve found the prob­lem.” I paused, catch­ing my breath. Was it cancer?

“We be­lieve you have mul­ti­ple scle­ro­sis,” he said.

“What?” I gasped in to­tal shock. He ex­plained MS is a neu­ro­log­i­cal con­di­tion that could cause all sorts of symp­toms – pins and nee­dles and numb­ness, headaches, fa­tigue. I nod­ded at each one. I’d had them all for years.

A whole range of emo­tions hit me – shock, worry and fear – but also sheer re­lief. Af­ter a life of ill­ness, I fi­nally had a di­ag­no­sis. It may have come about 30 years late but at last I knew what was wrong.

N ow, aged 41, I need a stick to help me walk and use a wheel­chair for longer jour­neys. I have good days and bad days. I’m tak­ing 20 tablets a day. But reg­u­lar hot stone mas­sages, re­flex­ol­ogy and reiki ease my symp­toms. I’ve also bought walk­ing sticks in funky bright colours.

MS is in­cur­able, but I refuse to let it de­fine me. Martin and I have trav­elled the world, from New York to Cuba, with me in my wheel­chair.

I feel so lucky to have Martin and Alex who are a con­stant sup­port. Martin en­cour­ages my in­de­pen­dence and makes me laugh ev­ery­day. I don’t live in fear of what’s wrong with me. I know now. And I plan to carry on liv­ing to the fullest.

I need a wheel­chair for long jour­neys and now have good days and bad days

With my pil­lars of sup­port – son Alex and hus­band Martin

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