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.
I was 12 years old and being home-schooled by my mum Patricia. Not because she or dad wanted it that way. I 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.
But 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.
Martin 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.
Now, 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.
Karen lives with her husband Martin and son Alex in Surrey, England