Meningitis B: 'I'm still the same inside'
Meningitis B cost Diana Man her legs – and almost killed her. She explains why it's made her determined to make the most of life, and her hopes that a new vaccine will spare others the same fate
Tuesday 21 June 2011
My mother still blames herself for not realising I was seriously ill when I came home from work that Friday night. I only vaguely remember it, but I know my symptoms weren't drastic enough to have alarmed anyone. I had been working behind the bar at a pub and suddenly started to feel very unwell. I was sick in the same way as if I had the flu or food poisoning. I drove myself home – I lived with my parents – and got into bed, thinking I would sleep it off. I don't remember the drive at all. I don't remember much from that week.
I have horses, so I was always up early to go see them and muck out. That morning, I wasn't. Mum came to check if I was all right, saw the characteristic rash on my arms and knew immediately that I had meningitis.
My parents took me to a local minor-injuries unit, where the ambulance met us. I was very lucky that there was a doctor there who knew to start getting me treated on the right antibiotics before I even got to accident and emergency. I spent 20 minutes in cardiac arrest, which could easily have led to brain damage.
I can't begin to imagine how worried my family must have been. I feel as if I knew what was happening because I've been told about it so many times – but I had no idea. Once I was over the cardiac-arrest stage, I was put in an induced coma for about three weeks to help my brain heal.
All my parents could do was sit and wait for my body to respond to the treatment. For a long time they lived in limbo, just waiting, not knowing if I would survive or which parts of my body would survive.
It was the disease that decided I would need amputations. The medical staff determined the timing and my parents signed the forms, but there was no mulling over whether it was the right decision – it was very clear it had to be done to save my life.
It was a relief for my parents to feel like they were doing something concrete to help me. I had several operations to amputate my lower legs, all the fingers on my right hand and to have multiple skin grafts.
Everyone always asks me what it felt like to wake up and realise my legs had been cut off, but it didn't work like that. The information must have seeped through slowly, because I was on so many painkillers I couldn't have one single, clear moment of realisation. When I was more clear-headed, I never thought: "Oh no, I've got no legs, I'm never going to be able to live." I just thought: "Right, they've cut my real legs off, I'll just have to learn to walk on metal ones."
I didn't give much credit to how difficult it would be to learn how to walk again and I did reach tough patches. But I didn't have many options except to get up again and carry on trying.
As I slowly became more conscious for longer periods, I mostly remember pain. Half of what was left of me was affected by septicaemia. The other half was used as donor sites for the skin grafts, leaving almost all of me covered in dressings. I will always remember screaming in agony during dressing changes.
Once out of the woods, I began on the long road to where I am today. As I started to attempt slightly more rigorous physiotherapy sessions, we discovered I had developed a form of epilepsy called myoclonic jerks (small muscles twitches) and an increase in stress would cause a fit. I also found I had a stutter and I struggled to read.
About three months after I become ill I was taken to a specialist rehabilitation unit for amputees at Queen Mary's Hospital, Roehampton, where I stayed for another three months. The main focus of my care was the fitting of limbs and relearning to walk and do simple tasks such as writing, dressing and cooking. For a while, I completely lost my independence and I had to be very strong to regain this. When things are hard and painful, it is much easier to become lazy and not do them.
When I left Roehampton, I was thrilled to be walking with two sticks. But as soon as I started walking more, the skin on my stumps would break down. Only a month later, I was confined to my wheelchair, hoping these sores would heal. But they didn't. I had to have another operation on both stumps and wait months for them to heal again, before I was fitted with another pair of legs. These setbacks were the hardest. Some days I didn't want to get out of bed because I knew I was only going to sit on the sofa.
Mum thinks if she had found me earlier in the morning, then all these long-term effects might not have been so serious. But she didn't know – it was totally out of the blue. Obviously, I don't blame her at all. I can't blame anyone. And I think that makes it easier to stay positive. There wasn't anything that I did wrong or anything that anyone else did. It just happened to me. I can't look back and think: "If only I hadn't done that I wouldn't have put everyone through all this."
Now I have a pair of running legs and a pair of legs that allow me to ski ( I can wear heels in them, too). As soon as I could walk, I was desperate to start taking control of as much of my life as possible, so I moved out of my parents' house and into a flat of my own.
I started riding horses again about 18 months ago. I had to think hard about whether it was something I wanted to get back into or whether it was something I wanted to leave as part of my life before I got ill. I knew I would struggle to do the things I used to do easily, such as galloping cross-country, but I decided to go for it. If I never tried, I would never know. I was unbalanced to start with and it still feels very different. Sometimes I get frustrated, but I'm happy to be trying.
I'm lucky that I don't feel strong anger or grief or guilt – emotions that affect many of the amputees I know. Most of the time I don't really notice my physical disabilities and I can still be as independent as I was before. But I do feel sad sometimes, especially when I see people doing things that wouldn't be worth the effort now or things I just can't enjoy anymore. I feel awkward at parties. I never know whether to go with my legs showing. If I do, everyone straight away judges me as "the disabled person" but if I hide them, people wonder why I'm sitting down the whole time and I have to explain why. I can dance, but not in the same wild, let-my-hair-down way as before because I would just fall over. Still, I'm getting better – there was a stage where I didn't go to parties at all.
People often ask me whether I really am as positive as I seem. I know the long-term effects could have been much worse and I guess I've just always been thankful that I haven't suffered any major brain damage, given what I went through. It sounds corny but I'm so pleased about that, the rest of it doesn't bother me so much.
I wouldn't say I've changed much since I became ill. I don't feel any different inside, but the way people see me has definitely changed. It's sweet when little children stare at me – they've probably never seen anything like metal sticks for legs before.
I'm always happy to talk to them and answer questions and I don't mind if they want to touch my legs. Their mothers are always embarrassed. I only get annoyed when adults stare or ask stupid questions, because I feel they should know better.
The next stage of recovery for me is to find a more fulfilling job. I started doing data entry from home to earn some money two years ago but it was only meant to be temporary. Sometimes I feel as though I'm treading water, but I don't know if that's wholly down to my illness.
I would like to get involved in the charity sector. It's always been something I would have liked to do, but it's even more appealing after having been through all of this. It would be especially nice to use my experiences to help other people.
I'm supporting the Meningitis Research Foundation's Counting the Cost campaign because, despite everything I've been through, I'm lucky enough be able to express myself and say: "Look at all the damage this has done to me." The disease isn't easily treatable because it's so difficult to pick up and it acts so quickly. I have received brilliant care during my rehabilitation, but it would be infinitely better to invest in the new vaccination for meningitis B (which is expected to be licensed by the end of this year) to stop people from getting the disease, instead of ploughing money into treatment.
I cringe when my parents say they're proud of me and when people use the term "inspirational" about my story. To me, what I have achieved since I became ill just seems like the natural path to have taken.
I don't understand what else I would have done. I think, well, I could have given up and been miserable for the rest of my life or take each day as a challenge. I do like a challenge, though this wouldn't have been one I would have chosen. But given that it's here now....
The Counting the Cost campaign aims to highlight the lifelong financial and human costs of meningitis and to petition the Government to add the new Meningitis B vaccination to those recommended for all infants. For more information or to pledge your support, visit www.meningitis.org
Interview by Enjoli Liston
Meningitis B – the silent killer
* There are about 1,600 cases of meningococcal disease caused by meningitis B each year requiring hospitalisation – and about 120 deaths.
* Meningitis is the inflammation of the meninges, the lining around the brain and spinal cord.
* The meningitis bacterium lives harmlessly in the noses and throats of one in 10 people but in some people can cause cause life-threatening illness.
* The bacterium can also sometimes enter the bloodstream, causing meningococcal septicaemia, a devastating infection that can lead quickly to organ failure and death and is marked by a distinctive purple rash on the skin. Death can occur within just hours of the symptoms appearing.
* Bacterial meningitis and septicaemia symptoms include fever, vomiting, headache and feeling generally unwell, which can make it difficult to recognise.
* Earlier this month, scientists announced results of trials of a vaccine against meningitis B, which provides 80 per cent protection.
* The vaccine is expected to be licensed by the end of this year and will be considered for introduction to the routine immunisation programme for children.
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