Meningitis leaves lasting legacy

Jennifer Hamilton who had viral meningitis five years ago and survived. Picture: TSPL
Jennifer Hamilton who had viral meningitis five years ago and survived. Picture: TSPL
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FRIGHTENED and desperately ill, Jennifer Hamilton turned to the nurse beside her hospital bed and dared to ask the most terrifying question of them all.

“I needed the truth,” recalls the mum-of-four. “I needed to know if I’d still be alive in the morning.”

Few might dare to ask that question for fear of what the answer might be.

When it came, the response was at least honest even if, perhaps, it did not bring the confirmation Jennifer longed to hear – that, yes, everything was going to be perfectly all right.

“The nurse just said ‘I don’t know, sweetheart, but we are trying our best’,” she says. “And that was pretty scary.”

She had just been rushed by ambulance to the Western General, blue lights flashing but siren switched off as the noise it made left her writhing in agony, her headache which had started the day before now totally unbearable.

“I’d gone to bed early the night before because my head was sore,” she remembers. “I’d been prone to migraines in the past and thought maybe it was that. So I took painkillers and settled down at around 7.30pm.

“But when I couldn’t get to sleep, I started to wonder what was going on.”

In fact, Jennifer was in the grip of meningitis and without hospital treatment and an urgent course of antibiotics, there were fears her condition could deteriorate rapidly.

Today, she reflects on the terrifying episode full of gratitude for the emergency medical care that helped get her through. But she is angry and bitter too – because meningitis has left her with debilitating aftereffects that have changed her life. For while she beat the double whammy of having both viral and bacterial meningitis – both types were found in laboratory tests carried out at hospital – even now, five years on, Jennifer is still trying to cope with its legacy.

“It was around three months after I got out of hospital,” she says, “and I’d started a job at my local shop. But I kept having to take time off because I didn’t feel well. Things like trying to stack shelves made me exhausted. I felt weak and tired all the time.

“I’d expected to feel like that when I came out of hospital, but couldn’t understand why I should be like that months down the line.”

She was just 27 years old at the time, previously fit and active, a young family to keep her going but enough energy to see her through. Now Jennifer was so totally wiped out that it quickly became impossible to carry on working.

“I went back and forwards to the GP who eventually sent me to a neurologist back at the Western. Then I was told it can be quite normal after viral illness to be left with a kind of ME (myalgic encephalomyelitis) and that it might get better and it might not.”

It was an unexpected blow which left Jennifer raging at the injustice of it.

“I’d come through this awful illness, at one stage I was really scared I might die which made me think about how everything can suddenly change so quickly, so I had lots of plans for what I wanted to do with my life,” she says.

“I wanted to really make something of myself. Now I had this and it was stopping me from what I wanted to do.

“I’d forget things, I had no power in my arms, I was constantly shattered. I couldn’t work because it wasn’t fair on my employer to keep taking time off. I let down my friends because we’d make plans and then I’d pull out because I couldn’t keep up with them.

“It was just horrendous.”

In fact, beating viral meningitis is for some sufferers just the first round in a lifelong fight to get back to full health. For although less serious than its bacterial form, which can be accompanied by life-threatening septicaemia and result in loss of limbs and brain damage, viral meningitis can leave a string of debilitating aftereffects, from hearing loss to depression, headaches, memory loss, dizziness, anxiety and exhaustion.

Jennifer appreciates that she is lucky not to have been more seriously affected, but still the daily grind of living with the fallout of her illness is frustrating, leaving the 32-year-old only able to function if she plans her life with meticulous attention to detail.

“It’s always there in the background,” says Jennifer, who lives in Broomhouse with husband Robbie and children Leah, 12, Eloise, nine, and six-year-olds Ethan and Dylan. “I have to live my life around feeling exhausted and while I try not to let it stop me doing what I want, I know if I don’t pace myself my body will eventually say ‘enough’ and I’ll be wiped out for days.”

As well as fighting recurring fatigue, she also suffers from recurring headaches, each a reminder of the day five years ago when she ended up in hospital. “Emotionally, it’s peaks and troughs,” she says. “It frustrates the ‘bejesus’ out of me. I go through phases of being quite determined, then there are days when it’s totally overwhelming and I don’t know what to do about it, it gets too much.

“I’ve had to sit down and work out what I can do and what I can’t. In some ways it’s been positive because I decided that if I wanted to work I’d have to be my own boss and now I’m doing a job I love as a result of it. In other ways it’s so frustrating.”

Jennifer trained as a doula, a companion for women in late stages of pregnancy and post birth who provides emotional and practical support. Because she is self-employed, she is able to plan her work days, ensuring she has time off to recharge and fight back from the debilitating drain of her condition.

Still, it’s a bitter pill to swallow after what she thought was a battle with illness that seemed to have been won.

“You don’t think of meningitis as having this kind of aftereffect,” she adds. “You think it’s something you can get that can be really serious but that you can get through and then get on with life. You don’t think you’ll be feeling wiped out years later. I know I’m lucky and it could have been much worse, but five years down the line and I’m still learning how much I can do and what I can’t without really suffering.

“I can’t help but feel it’s really unfair.”

Troublesome aftermath

THE Meningitis Trust says many people are unaware of the aftereffects that can hit patients recovering from viral meningitis.

A survey by the charity revealed 97 per cent of viral meningitis sufferers – estimated at 5000 a year – emerge with debilitating aftereffects that can include exhaustion, headaches, memory loss, depression, anxiety and hearing problems.

Symptoms of viral meningitis are similar to those of the more serious bacterial form – headaches, muscle pain, rash, vomiting, sore neck, fever, dislike of bright lights and pale, blotchy skin.

Children and adults can be affected – over-55s are at risk as their immune system weakens with age.

• Viral meningitis week runs from May 6-10. For further information, contact the Meningitis Trust hotline on 0808 80 10 388