Kim L's story

23rd September 2021

"It’s taken me over 17 years to write this, I have tried before, but recently a film inspired me to put my story to paper, and not bottle it up. I hope it gives a little insight into the disease called meningitis and how it affected me personally

Kim L's bacterial meningitis case study

“In this same film there is a scene where a boy with a prosthetic leg is embarrassed about what a girl might think on seeing it for the first time, she tells him to ‘get over himself’. This is my way of getting over myself, you may be fed up about hearing how I run with no toes, or the symptoms and effects of meningitis. 

"I don’t want this to be viewed as pretentious or self-pitying but if one person reads this and it saves their life because they seek treatment when they need it, or if it inspires someone to know that whatever life throws at you, you can always go one better, then it’s worth sharing.

“1997. I was 18 and studying for my A-Levels. I liked running, lots. I ran cross country and 800m for school. I was visiting my boyfriend at Lancaster University. It was Halloween, we had been partying in fancy dress, my finger and toe nails were painted silver. I ate an awful meat pasty for lunch and then sat in on a lecture. I don’t remember what it was about. My head started to spin and I felt so sick, I rushed back to halls and vomited again and again. I was convinced the pasty had dairy in it and had triggered my severe allergy. We went to A&E. I was so cold, I couldn’t stop shaking. They prescribed steroids, which probably lowered my immune system, and sent me back to halls to bed.

Couldn’t move my feet

“When I woke up I couldn’t move my feet. I was still cold. There was a purple rash all over my body like little bruises. We went to the university sanatorium and they said I had flu. I said I wanted to stay. They put me in a bed. I kept being sick and had an upset tummy. The rash was spreading and getting darker. My feet hurt even more. I asked if it could be something serious. The nurse said it’s definitely not meningitis. Flu can cause a rash. My neck didn’t ache. I could easily look at bright lights. Eventually, hours later, they called an ambulance and blue lighted me to A&E.

“Did I wear dentures? That made me laugh, one of the admission questions for hospital. I knew it was serious by then. The word meningitis had been mentioned a few times now. My limbs were in agony. They gave me morphine. I couldn’t press the drug release button enough. I was scared, I was hundreds of miles away from home. Mum and Dad were on a cruise. There was a black mark on my face, I didn’t understand. Somewhere between A&E and Intensive Care a beautiful nurse tried to keep me calm. Her perfume smelt amazing. It was Sunflowers, she let me wear some. She tried to share a tangerine, I can remember those smells as strong as if they were under my nose right now.

“Intensive Care was hot and dark (except it’s actually cool and very light as I found out when I returned to visit). A doctor with a badge ‘Dr Seven’ (which petrified me after watching the movie Seven a few weeks before) put a line into my heart. I was awake and felt that I really shouldn’t be. Another doctor cut a hole in my throat and put me on a ventilator. I remember the tube being put down my neck. In some ways ironic, he was kind enough to make the cut so carefully that the scar would be small and to most unnoticeable. Sometimes there was too much fluid on my lungs, I’d signal to get a sucker down the tube in my throat to clear it, I was scared that they wouldn’t get to me in time, it felt like I was drowning. They wanted to take out my navel piercing, but no-one could figure out how to, that still made me laugh. Then they put me in an induced coma and I got to trip on acid legally.

Drifted in and out of sleep

“Whilst the blood poisoning attacked my body with gangrene and the pneumonia attacked my lungs, I drifted in and out of sleep. Bleeps, there are lots of bleeps in Intensive Care. I couldn’t bear that noise for a long time afterwards. Thankfully Casualty isn’t my favourite TV programme. I still detest hospitals, I don’t know why I am so scared of a place that ultimately saved me. The computer on the staff desk opposite, the screen saver was 3D Pipes, I looked at those pipes through a sleepy haze a lot. I can’t look at them anymore although I can still see them moving in my head if I want to. The male nurse called Sandy was really good looking, or maybe it was the drug goggles. My nurse was called Michael, he was a runner, he kept me alive. The female doctor had really bad eczema on her face, I thought she worked too hard.  The worst dreams I had were similar to the scene in Labyrinth when Sarah is chased by the Junk Lady through a door and she is back in her own bedroom, and she mistakenly thinks it is all a bad dream. I used to dream I was at home and well, and that ICU had been a nightmare, but then wake up to realise I was still in my Labyrinth.

“I don’t know how you fight for survival, or if your body just does it automatically. I know I was thankful for my runner’s heart and lungs. I remember thinking I didn’t want to die and willing myself to stay alive with all I had. Somehow the drugs being fed into my veins with tubes and lines did their job. At one point my kidneys nearly failed and that would have been that, and although the hospital then accidentally tried to kill me with a food drip containing dairy, thankfully my mum (cruise cut short) noticed in time. At first I was convinced I’d been in a car crash but then remembered what had happened. I wanted to call my friends and brother. I couldn’t talk with a tube in my neck. I was scared when they took it out, my lungs wouldn’t work, or because there was a hole, the air would escape and never make it down my throat. My lungs worked and I could breathe by myself. Strangely I could remember my friends' phone numbers straight off the top of my head. I cried deep and joyfully when I talked (well croaked) to them all. My brother wrote me a letter saying he was sorry if he was ever horrible to me, and if I made it through, he would always be nice to me, the love of a baby brother. My family and friends supported me incredibly, I can never thank or love them enough.

Toes were black and hard

“My toes were black and hard, and the silver nail polish made them look freaky. My finger was black and like a piece of dead wood. My flesh was black and falling off on my shoulder, my bottom and other small patches over my body. The black mark on my face had gone completely with no scarring.

“I was transferred to a High Dependency ward. The porter dropped a pint of frozen blood on my foot. I cannot describe the pain, but I can recall it directly as it made me physically sick. A bit like the heparin injections straight in the tummy, instantly sick, so I’d put up with bruised thighs and have them in there instead. I was covered with tubes and holes, at that point, it didn’t matter. The first time I was given morphine by mouth I spent about two hours giggling, being high. Unfortunately it didn’t work like that again, the pain was immense, intense and unfair. At some point I had to try to put my feet towards the ground; I have gone through a 17 hour ‘back to back’ labour and run a marathon, these two things pale into complete insignificance compared to that pain of trying to put my feet towards the floor for the first time.

“An ambulance took me all the way back to Norfolk. I felt every bump in the road on my sore body. It was a long journey.  I was in isolation in case I had transferred MRSA from the other hospital. Eventually I saw my friends. I received hundreds of cards, teddies and balloons, I felt so much love, it helped offset the pain. I had lost around three stone, my legs looked so skinny; all my running muscles had gone. I plucked up the courage to ask a consultant if I’d be able to run again. And he said, maybe without thinking about the impact seven words can have, “Yes, but you won’t win any races.”  In the middle of the night I wanted to brush my hair, it took me over half an hour to reach for my hairbrush, I was so weak, my muscles wouldn’t do what my brain told them. It made me angry.

“It was embarrassing having a catheter, I had to walk again so I could go to the bathroom. This was my initial motivation. It hurt, it hurt so much, but it was worth it for my dignity. I’m ashamed to say that sometimes I pretended to be asleep when people came to visit me, sometimes I couldn’t face the conversation about how I felt. I didn’t know.

Kim L's bacterial meningitis case study

Can’t play the oboe any more

“I was transferred to another hospital. They cut off my dead finger. I watched. I can’t play the oboe any more, but I wasn’t that talented at it anyway. My writing looked like a 5 year old’s to begin with, but it’s legible now. I got extra time in my exams, even mathematics, bonus! I got told to re-sit a year at college. I didn’t, I still got three As and made sure I went to university at the same time as my friends. I’m stubborn like that. 

"I drop things a lot, pens go flying across the office, my brain still thinks my finger is there; I've only dropped the kettle once. When I run I can still feel my finger in my gloves, phantom pain, same with my toes, it’s weird. Oh my toes. They fell off one by one, once I was allowed home, the nurse would come to change the dressings on my feet every day. They stunk. Rotten. It was dead flesh, of course they stunk. I did hand my mother two dead toes in the middle of the night. We burnt them in the wood burner, silver nail polish and all. What else could we have done with them?

“I walked like a penguin at first, toes give you balance and a sense of space, I kept bumping into things. I now have an excuse for my natural clumsiness. I had crutches and a wheelchair for a few weeks. I was only offered limited physio, the care I had received in hospital was amazing, our NHS saved my life, but the aftercare and rehabilitation was non-existent. My ex-boyfriend was embarrassed to take me Christmas shopping in a wheelchair. Note the word Ex. The pain eased up, but the scars on my feet and up my Achilles constantly itched, I couldn’t wait to get my shoes and socks off and scratch like crazy. The wounds on my bottom and shoulder became awesome big raised red scars too. I hid them for a long time. It’s hard to be an 18 year old girl with scars. It’s hard to be an 18 year old girl without scars. I had already been bullied at school for being an eczema covered scabby geek, my self-confidence was non-existent even if I didn’t show it. I have done a totally nude glamour shoot since to help me deal with these marks left on my body. I wore open toed sandals in Ibiza the next year and there were comments. I have never worn open toed shoes since. Flip flops are not my fashion item. I’m only just learning to be confident enough to show my feet to people.

Other lasting after-effects

“Other lasting after-effects? My pupils don’t respond quickly to light, some of the nerves on my eyes might have been damaged. No big problem, I just sometimes look like a heroin addict. Tiredness, sometimes I am so tired I can’t move, but I’m a mum of a hyperactive sleep allergic toddler, I run 30 miles a week and I’m a partner in an accountancy firm, so of course I’m tired. Flashbacks, feelings of insecurity, anger, naturally, not often, but I hope they are justified. Each year when the clocks turn back, and the leaves are on the ground, and there is a feel of autumn in the air; Halloween haunts me more than most I guess.

“So, back to a very important thing in my life, running. In the Easter of the following year, I jogged a mile of the Pennine way with my intensive care nurse. We raised money for charity. I ran on and off in the years that followed, including the Great North Run with my Dad and brother, it had always been a passion and something I was good at, but the words of the consultant stuck in my mind and stopped me pursuing it properly, I would tell myself my feet were still healing, when in fact running probably could have healed them (or me) so much sooner.

Running heals

“In 2008 I joined a super supportive running club and started training again. Something clicked. Remarkably your body always remembers its sport. My first 10k race for the club was just under 50 minutes, in 2009 I broke 40 minutes, it felt spectacular. Scars eventually turned to stars. I’ve won quite a few races since then too and placed in many. I have county medals and I’ve been Sussex road racing Grand Prix senior champion, my PBs are 19:23 for 5k, 39:04 for 10k, 65:45 for 10 miles and 1:27:27 for a Half Marathon. I rank in the top 100 in my age group in the country for these distances. Okay, that’s not going to get me into a GB vest, but it’s not bad. It may have taken me over ten years to prove Mr Consultant wrong but tell me I can’t and I’ll show you I can, eventually.

“I was convinced however that my feet wouldn’t get me around an entire 26.2 miles of marathon. Others knew me better than myself and persuaded me to try. Marathon training can bring out the negativity in every runner. Self-doubt, self-pity and tantrums a-plenty. I remember stopping still halfway into a 20 mile training run and saying my feet just won’t do this. No different to any other virgin marathoner in training. I ran London 2010 in 3:24. Ecstatic, but broken, I wouldn’t do another… I ran Brighton in 2012 in 3:09 dressed as Supergirl; I’m not sure I could match that physical high with anything.

Kim L's bacterial meningitis case study

“Yes my feet hurt, at the moment they bleed too. I can’t stop the pressure sores. Sometimes I feel the toes that are not there and other times I get sharp pains shooting through my feet. I’ve tried innersoles, prosthetics, lamb’s wool, hundreds of different trainers, and my current favourite is play dough, yes they all help a bit. Will the pain stop me? No.  It’s only temporary, I’m not damaging myself (of course I have to be sensible and realistic as 50 plus mile weeks, and Ultras are probably out of the question for me). The adrenalin and buzz I get from running a PB, or placing in race, or enjoying a new route on the South Downs with friends or smashing up speed reps on the track, outweighs this pain, a million to one.

“Do I get negative or depressed? Yes, sometimes. Every injured runner’s prerogative? Surely. My downhill running is awful as I can’t propel forward safely. It’s only natural to wonder would I be a better runner if I had all my toes and more flexible un-scarred feet? But actually perhaps I wouldn’t have the drive and grit that makes me the runner I am if I hadn’t gone through the experience that I had. Meningitis is a cruel horrid disease, it kills and it maims. There are so many survivors and fighters without arms and legs, without sight or hearing. There are toddlers and babies who have suffered so much more than I have.

“What do I think about when I’m running? What makes me tick? What gets me to the finish line? Why is running my drug? First there is a new motivation in my life, my son. Running again proved to be my salvation after suffering post-natal depression and over a year of torture with my poor baby suffering with silent reflux. It let me be me again and not just a mummy without a clue. I run for my sanity but also to inspire him to be fit and healthy, to motivate him to always do his best and not to be afraid of failure. That love that you never knew existed until you have a child, that love that must nearly have broken my parents’ hearts when they spent every hour watching over me in intensive care, so close to losing me, well that love can motivate you to do absolutely anything.

“But there are also my two mantras. The two things that are the positives jumping out from this negative horrid experience. The two true scars that I have been left with.

“I run this body. Nothing else does, and certainly not meningitis. And I am the luckiest most privileged runner, with or without toes, in the entire world. It would be an injustice not to try my hardest.”

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