Meningitis: My Story

Meningitis the word that sends shivers down the spines of parents.  It’s one of those things you fear but never think you’ll have to deal with.

I was 16 when I first contracted meningitis. I had a headache which was crippling and I couldn’t move my neck and the light burnt my eyes. My mum assumed I had a migraine and left me in bed. It wasn’t until later that night that when my Mum and Aunt checked on me I was unresponsive and my lips were blue. She called NHS Direct because my mum is a great believer in not wasting NHS resources. They told my mum to open the front door and have someone stand outside as an ambulance was on it’s way. They told her to stay on the line until the ambulance and paramedic arrived. I was rushed to hospital and was seen immediately. They asked my Mum and my Nan lots of questions. The doctors then took my Mum and Nan out of the room and told them that I was dying and that I may not pull through the next 24 hours. They said I had one of three things, a brain tumour, a bleed on the brain or meningitis, either way I was critical and to start making calls home.

They started antibiotics before they knew what was making me so poorly. They advised that my family come to the hospital. So in shifts my family came and essentially said their goodbyes.  I can only imagine what went through my parents heads.

After scans, lumber puncture, and tests, my family was informed that it was likely to be meningitis because of the look of the spinal fluid and that it would be confirmed once the spinal fluid had been cultured.

A few days later the Doctor came to my room and gathered my family around me, he pulled the chair close and said he had bad news it was confirmed I had bacterial meningitis, and that wasn’t it… I also had viral meningitis at the same time. I was seriously ill, I wasn’t out of danger just yet. He then told me I had to have more tests and a hell of a lot more treatment. I had to have a chest X-Ray as I’d also developed a form of meningitis in my lungs. I spent weeks and weeks on end in hospital. I finally got discharged to be seen in clinic every day.  That was short lived and I was back in hospital less than 24 hours later. I was in hospital so long  that furniture from my aunts house was put in my hospital room. I was then allowed to go home for an hour a day and increase it gradually.  When I was finally discharged I still had to be seen at clinic everyday, then every other day, every fortnight etc. This was due to my weight. I’d gone into hospital a healthy weight. I was 9 and a half stone with F cup boobs. When I left hospital I was 4 stone 11lb and had no chest at all. I was so  tiny I could fit into 6 year old children’s clothes.

Typically this came at the worse time for me as I was due to sit my GCSE’s.  My parents had a meeting at the school and had to make the decision that I either was held back a year or sit my exams still. I refused to be held back and sat my GCSE’s and hoped for the best.

My recovery took over 18 months, even then I struggled to put on weight and maintain it. I suffered with headaches and my eyesight.

I did manage to pass all my GCSE’s.

Then in 2010 aged  19 just one month before I turned 20 I was struck down with meningitis a second time. This time I was left in bed because it was at the time of the swine flu epidemic. I knew myself the pain I was in was the same as before. It’s a pain you’ll never forget. I was rushed to the hospital where I was told that it sounded like meningitis again. A few days later it was confirmed that I had viral meningitis and I was very poorly. Doctors were astonished given my history that I had contracted meningitis essentially for the third time. I spent 2.5 weeks in hospital where they managed my pain. It took me a long time to recover and was seen in clinic a number of times. It was discovered that I was suffering with PTSD in almost four years I had suffered at the hands of a deadly disease three times.

I had been left with a suppressed immune system which means I catch illnesses really easily.

Since my ordeal I have been diagnosed with Chronic Daily Crushing Migraines. This is due to the brian damange and chemical changes of the brain that was caused by meningitis. I spend a lot of time suffering pain, my migraines are disabling. I go into hospital every 12 weeks for treatment and will have to live with this condition for the rest of my life.

Not only do I suffer with my head, meningitis has damanged the nerve endings in my feet so I have no reflexes in them. I have poor vision and suffered slight hearing loss.

Here I am at 28 writing my meningitis story because I’m recovering from viral meningitis again. I went to hospital with pressure in my right eye. This developed to a loss of vision accompanied by a crippling migraine. I went to A&E. I was put on a number of drips and was sent for scans. I was told I had slight fluid on the brain but should absorb into the body it’s self. I stupidly dragged myself to work for the next two days and booked leave for the Friday. I was advised that I should get my eyes tested as that may be the cause. I went to the opticians, where he took one look at my eye and said that he was sending me to A&E. He took me out to my partner and told him to take me straight away. There I was back in hospital.

I was seen and they didn’t know what was  wrong with me and again I was back on drips and pumped full of strong  medication. I was also connected to a ECG machine because my heart was racing. We were then told that there was no Neurologist on call over any of my local hospitals. They wanted to keep me in critical care but was told there wasn’t a bed for me. They sent me home with a letter to be seen on the Monday.

Monday came and after more tests I was sent home again to go back on the Tuesday.  I went in first thing where I had another brain scan, and was canulated again to go back on a drip. I was given a potassium drip as well as fluids and pain killers because they had me down as at risk of a stroke because my blood was clotting too quickly and my heart again was racing. I was told that they wasn’t sure what was wrong. They told me that my brian scan had come back abnormal and it was being sent to a Neurologist/Neurosurgeon  I was given an appointment to be seen the following week. I got signed off as I was too sick to work.

I found myself back in A&E at St Thomas that very next week. There was no improvement in my condition.  My pulse rate was 106 so the Doctor told the Nurse to run an ECG so she did my heart rate was then up to 126 beats per minute. I was rushed to Majors and Resus.

A day or so later it was confirmed that I had viral meningitis and that I would have to be signed off for another 3/4 weeks. This disheartened me a little as I love working and I love to be busy and social. The day after my birthday I was given the devastating news that my brain was covered in abnormalities called lesions and that there was too many to operate on. I was also told that the infection had put a strain on my other organs and that they now have a concern over  my heart. I have been made aware that my heart rate is very high and this is a concern because my heart could just stop and I could go into cardiac arrest. I now have yet more pills to take. Basically what I was told is there isn’t anything they can do for me other than to keep me comfortable and manage my pain.

Im a ticking time bomb just waiting for my body to give up on me, all these health complications I suffer all caused by one deadly illness. It could have cost me my life and I’m fortunate that I have my life and I still have my limbs. Sometimes I find myself thinking I’d cope and manage better without limbs if it meant my brain was ok. My brian controls my whole body and now that doesn’t work, the rest of me doesn’t act how it should for someone of the age of 28.

My advice to anyone is learn the signs and  symptoms and don’t wait for a rash not everyone develops a rash. I for sure didn’t.

All the information on meningitis can be found on http://www.meningitisnow.org.

 

 

 

 

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