Well done to everyone who ran in the London Marathon today! Especially all those running for the Meningitis Research Foundation!

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Check out the Meningitis Research Foundation website: http://www.meningitis.org/ to find out all about meningitis and septicaemia.

Blog for Meningitis Research Foundation

My involvement in Meningitis Research Foundation’s Awareness Week really began the week before Awareness Week. I had a phone interview with a journalist for the Daily Mail. This got me ready for what was in store for the following week, giving me an idea of the types of questions by the media I would be asked and allowing me to mentally prepare for the task in hand. I ensured I remained calm throughout the interview as I didn’t want to reveal details which I didn’t want to make public and wanted to make my focus on the pushing for a vaccination for Meningitis. My mum spoke to the journalist in order to give a parents’ perspective, a stance the Daily Mail were keen to take and added to the overall impact of the article.

A few days after the phone interview I had photos taken. I was dreading this process and felt very shy, especially when the photographer said that I really should be wearing a skirt. However I had decided by this stage that I was happy to do anything (within reason!) to help the campaign and so I donned my Kate Bush inspired outfit with pride and went for photos in the park, embracing the people staring at me continually with the vague hope that I was famous.

The following week was officially Awareness Week and following the frenzy of the Daily Mail article I was ready to get involved in whatever ways I could and publicise the campaign as much as I could, including getting friends and family to sign the petition and posting numerous Awareness Week related ‘statuses’ on Facebook and Twitter!

I also made sure I publicised the Awareness Week to my local media, both in my parents’ area and in Leeds as I wanted to touch both of my communities. Therefore I contacted The Retford Times who wrote two excellent articles, one focusing on ‘my story’ and the other focusing entirely on meningitis and septicaemia and the positives a vaccination for Meningitis B could bring which I was very pleased with.

I returned to university in Leeds and the next day had an interview with Calendar News. This was the first time I had been behind a camera and I was fairly apprehensive. However, the journalist who was interviewing me put me very much at ease and it became very much a relaxed conversation, I almost (but not quite) forgot the camera was on me. I was really happy with how this piece turned out as they focused very much on students starting at university, which is where I contracted meningococcal septicaemia and so is a very important focus group for me in raising awareness. I was nervous seeing myself on tv but was very pleased with the outcome and it was great to see my experience being used to such great effect.

My next (and very much most nerve-wracking) media appearance was for The Wright Stuff Extra with Gabby Logan. I begged my mum to come down to London with me where we stayed the night and travelled to the studio the next morning. I was most anxious for this interview as it was live, it was television and I was aware that I may be asked a question that I didn’t really want to answer. Also, they asked me to take my other pair of legs with me to show the viewers. This for me is not something I mind doing but rather an action I have never really done, even with some of my closest friends. However, my decision to get involved with Awareness Week meant that I was happy to open up a piece of myself, and my experience which I had kept hidden previously. Also one of my main concerns with this interview was that I was given strict guidelines on what I was not allowed to mention: the Meningitis Research Foundation, the petition or the Counting the Cost campaign and I was also not allowed to wear my Research Foundation t-shirt. This was hard as the Awareness Week was the sole reason I had agreed to share my story. However, I was really pleased with the publicity the show was able to give.

On the Friday of Awareness Week I had an interview with BBC Nottingham. They were great as they were happy to mention the campaign as much as they could and so I didn’t feel under any pressure to try and mention the details of the campaign as I was given the space to speak freely about it.

I cannot encourage people enough to get involved with future Meningitis Awareness Weeks. If you or your family has been affected by meningitis or septicaemia the best thing to do is speak out and raise awareness. In some ways Meningitis Awareness Week helped me too. I dealt with the after effects of this devastating disease, by choice, very privately, talking only to my parents and close friends and coming to terms with the changes in my life and the realisation of my own mortality which this disease brought on my own. Thus when awareness week came, the realisation that I could use this life-changing time to raise awareness was very empowering and I felt that by being honest and open about my experience people were truly stirred by my story into trying to get the vaccination introduced so others didn’t have to suffer. 

Meningitis Awareness Week

http://www.dailymail.co.uk/health/article-2036643/Kathleen-thought-flu-In-fact-meningitis--cost-legs.html

http://www.retfordpeople.co.uk/key-role-inspire/story-13378103-detail/story.html

http://www.retfordpeople.co.uk/Kathleen-backs-efforts-raise-importance-Type-B/story-13378104-detail/story.html

http://www.itv.com/yorkshire/meningitis-warning13213/

http://www.bbc.co.uk/programmes/p00kbqvk

Publicising a private realm

I recently became involved with the Meningitis Research Foundation and, amongst a number of other things, they asked me to fill in my experience on their "Book of Experience". I was dubious at first. It's been almost four years now since I had meningococcal septicaemia and have never really felt like publicising the time, or, more importantly for me, my emotions about it. I'm very aware of the changing state of emotions and to portray my experience in writing seemed as though it would wrongly limit a continually changing process.
I did it however and i'm pleased I did. I want to help raise awareness for the vaccination of meningitis b and the Research Foundation urged me to fill in my experience in order that they could send it to media contacts and I could then speak to them about pushing for vaccinations. Part of me wanted to force myself outside of me comfort zone, to state explicitly with no qualms some of the practicalities and emotions that I sometimes struggle with.
Obviously this account does not portray my deepest feelings. I left out the majority of my experience. The entry could have covered 50,000 words! Also, it is important for me to retain the darkest moments for myself. I cannot, and would not want to, convey these moments.


My experience:

It is very difficult to write this almost four years after having meningococcal septicaemia. The way I feel about the experience now is extremely different from how I felt at the time or even in the following first year, or even two. Conveying the rawness of my emotions in the early days and months is something I will never be able to achieve. My experience too, has inevitably incorporated other people’s experiences, especially since I was in a coma for almost two weeks. This entry then, is my experience of meningococcal septicaemia as I feel about it right now. It is an experience which has evolved, and will continue to evolve, has been horrifying and rewarding, caused great heartache and tears and irreplaceable pride. 

I had started at the University of Leeds in September 2007. I was having fun, had made many friends and was enjoying life away from home: my first taste of independence. I had danced since I was young and had joined a dance society at university with rehearsals most nights.

As the semester drew to a close I was looking forward to my 19^th birthday in December.

On 3^rd December I had been to a dance rehearsal and felt fine, just tired. I had gone to bed relatively early, having to get up the next morning to attend an important seminar (one I didn’t dare miss!). During the night I remember being delirious, shaking uncontrollably and being sick. In the morning, somehow I dragged myself out of bed and luckily opened my locked door before stumbling out my room into the hall of the flat. The lights were blinding and I just managed to get into the kitchen where, again luckily, a couple of my flatmates were. The next thing I really remember were the paramedics in the kitchen asking what I had been taking and saying I would have to take a trip to A&E.

Sitting in A&E, the two friends who had accompanied me offered me water but I kept slipping in and out of consciousness.

After this my memory is very hazy, (consisting mainly of morphine induced dreams in which the nurses would frequently be trying to kill me, terrifying when I finally woke up properly). I have however, been told of what happened by my parents who ended up staying in the hospital whilst the doctors, and myself, fought to save me.

After we had waited in A&E for almost an hour, one of the doctors had spotted a rash starting to appear on my arm and had taken action straight away and I was rushed to ICU. Multiple organ failure followed and I was placed on life support. After an hour’s drive my parents were confronted with the horrifying news that the daughter who had only left home a few months ago was dying.

However I somehow managed to survive the first forty-eight hours despite the condition of my heart being described as “shocking” by a heart specialist. After I had made it out of the most critical stage the doctors were most worried about my kidneys. I was put on dialysis and they feared I may have to remain on it as I just wasn’t weeing! After three weeks in ICU, I was moved to HDU (where I spent Christmas) and then to a kidney ward. This stage of the hospital part of my experience was one of the worst. I was awake most of the time and had a lot of time to think and also to look at the state of my legs, which was horrible because of the effects of septicaemia. It was here that it also turned from 2007 into 2008, New Years Eve. The nurses came in at midnight and gave me a celebratory glass of milk (party!) and I remember looking out the window; I could still hardly move at this point and could hear the fireworks but not see them. I thought about all the happiness and positivity that was being celebrated at that moment and which was a long way from where I was.

Being told I would lose my legs, is to this day the hardest moment I have encountered. Initially the plastic surgeon thought it would just be my toes and heels but as the time went by my legs showed no sign of improvement and were gangrenous and necrotic. Now, I can’t imagine how I coped with looking down at my legs and seeing dead, withered flesh. It is a stark image and one which will stay with me, but not one which causes me much pain. The loss of my limbs, the empty space on the bed where my legs once were, is still emotionally painful to me. It is this sense of loss, which I find hard to comprehend and which causes me the most upset. I remember screaming when the surgeon told me I would lose my legs. I believed I had survived the worst but this news made me realise that meningococcal septicaemia would affect my life forever. I felt it would be a physical hindrance and a daily reminder of this horrific experience I just wanted to forget. I would never dance again. At the time I didn’t even think I would walk again and I certainly never thought I would be beautiful again.

This concept of beauty is something I think about a lot. Before the devastating effects of septicaemia I was very entrenched in the encoded societal views of beauty, those forced upon us by the media. But now I believe beauty can be found in all people, and in all different kinds of forms. There is something very beautiful and very empowering for me, now, to look at my body and see the physical effects of septicaemia and know what they mean: my body is a physical embodiment of overcoming hardship and remaining strong.

After three months in hospital I returned home to my parents’ house to recuperate. My bed had been put down in the living room. I regularly attended physiotherapy in Leeds as we decided to keep all my treatment there at the Seacroft Hospital, where the fittings for my first legs were also done. It is only now that I really appreciate how important these physiotherapy sessions were. Lynn, the physiotherapist there, was, and is, fantastic. Looking back now I never even comprehended not walking again once I realised what was achievable. I was happy to merge my body with the technology if it meant being able to stand tall and walk again.

During this time there were also a number of hospital visits. I was officially discharged. I went for hormone tests as my hair was falling out. I had a number of weighings and blood tests. But top of the agenda for me was learning to walk! It didn’t take long. I was relatively fit still, just very weak and still only weighing about 6stone. Because of my dancing prior to getting ill, my balance and posture were very good. My first pair of legs felt and looked cumbersome. I had imagined that I would straight away be walking on legs that looked real and nobody would be able to tell but I was bitterly disappointed.  I wanted straight away to be wearing heels and shorts and dancing in clubs but this was not to be the case. I did eventually get a pair of legs which allow me to wear heels but they hurt and so I mostly stick to my “comfy” legs which means I have to wear flats but it’s a sacrifice I will take to save pain!

I returned to university the following September. Life was very different and it was hard to adjust to the changes. I am immensely proud and it was difficult at first telling my new flatmates what had happened. I felt like they would instantly view me as weaker, but in fact it was the opposite. They were occasionally nervous asking me questions but as we grew closer they would ask things and express how impressed they were at what I had managed to do. Obviously I could no longer dance but I attended rehearsals regularly and helped with choreography; I also took up photography and art and helped to set up a disability society in the university.

I recently became a befriender with The Meningitis Research Foundation and I look forward to helping others affected by meningitis or septicaemia.

As for fitness, it is difficult but I do what I can with the free time I have. Walking great distances can be tough, I suffer from pain and from sweating so my legs slip if I walk more than a mile which is very annoying. To avoid this I bike places rather than walk which keeps me active. I swim and have recently started yogalates which is great for keeping toned and strengthening the muscles. I do miss exercise. I never feel like I am really working myself anymore, never feel completely in control of my whole body as I did when dancing. I can jog very slowly but I would love to be able to sprint and feel that sense of freedom, and my lungs exploding. What I didn’t realise at the beginning of this process is that different exercises require different prosthetic legs but this is very expensive so I make the best of the legs I have, in terms of exercise.

It has taken until this year to begin to regain true confidence. I feel more content with what has happened and especially the way I look and my physical capabilities now.

Now, I have completed my degree and I am doing a masters. I will continue being active and positive. It is crucial for me to remain so. Having meningococcal septicaemia has been tough but it has given me an irreplaceable insight into myself, my strength of mind, dealing with hardship and also the compassion of others. It is an experience which has added to the rich tapestry of my life.

Preface

This is my first blogpost. It even took me a good twenty minutes to figure out how to blog, which has stopped me blogging for a good two years now (motivation for understanding technology is low at times). I toyed with whether to deliver the overly common and horrifically boring introduction portraying "why I'm writing a blog" but felt I better in case somebody actually stumbles across this (any Arthur Rimbaud fans for example).
This blog, then, is going to be used for me to store my experiences of being an ambassador for the Meningitis Research Foundation. As will become clear it is a charity which is extremely close to my heart and I hope that it will reach people and encourage them to get involved. Some of the writings may be emotional - but there will be a lot of fun had also!