My Story

[AlyxLouise94]

Hello Everyone,

I contracted meningococcal septicaemia on the 27th February 2016 and was admitted to intensive care where my family were told the next 48 hours would tell us whether I would survive or not. I however have no memory of this. I remember being in work the week leading up to this with what I thought was the flu but refused to take time off work because I am a teacher and knew it would be easier to work myself than supply work for another teacher.

On Friday I remember texting my mum asking her to get me an appointment for the doctors that day because I didn't know what to do with myself. I went to doctors that evening to be told it was a bad case of the flu and to go home and rest. I rang my mum to come get me and my car because I didn't feel able to drive.

I don't remember a lot of the next day apart from being sick a lot and at one point getting up to go to the bathroom and collapsing where my right leg gave out and I could no longer move. That's when my parents saw the rash and rang for an ambulance.

I remember small parts of what happened after that but I deteriorated very quickly and just passed out. I woke up in ICU 5 days later at the BRI unable to move my right side at all and with wires everywhere! Everyone who knows me knows how terrified I am of hospitals and needles so I wasn't too happy!

I stayed in ICU for an additional 4 days before being moved to the high dependency stroke ward because I had also suffered 2 strokes on the left side of my brain.

I was discharaged from hospital 5 days later with the early supportive discharge team coming into see me twice a day for the next 3 weeks. The first night home was wonderful, until it came to going to bed and having to climb the stairs... that is an experience I'm not going to forget! My fiancé pushing behind me and helping my raise my right leg whilst my mum held my hands and pulled! It made us all laugh though which is what we needed after everything that had happened.

A year on and I am mostly recovered, I now have to wear glasses because my eye sight deteriorated, the back of my left leg and bum are numb and I suffer 1-2 times a month from migraines which wipe me out for at least 2 days.

However the positives!!

I returned to full time teaching last September, am able to drive again and bought a house with my wonderful fiancé. We are also getting married in October 2017.

I have so much love and thanks for the Bristol Royal Infirmary and the wonderful doctors and nurses in ICU and the stroke ward and my physios for without them I would not be here today or be able to walk again.

[StrawberryCream]

Thank you for sharing your experience of Meningococcal Septiceamia with us and how you have progressed from being life threatening ill to being able to return to full time teaching in September 2016. A remarkable story and you have done incredibly well. Thank goodness you were treated quickly enough to avoid the seriously life altering limb loss etc that can frequently occur with that strain of meningitis. It will also have been a very frightening and upsetting time for your mum and fiancé. It's lovely to hear that you will be getting married in October 2017!

Very best wishes

[ignoreit]

My experience was very similar to yours...with one exception: You never mentioned EXTREME pain in your legs. If someone in ICU simply touched my mattress, my bad leg pain became excruciating! When I was released from the hospital, my doctor warned, "Don't use a walker...you'll become dependent on it." That was good advice as each day my gait improved. However, my foot pain (especially around my toes) was so bad that I couldn't wear a closed toe shoe for 10 years.

It's been 40 years now. I'm able to control my daily headache (always non-throbbing) with an American over-the-counter pill that combines aspirin & caffeine. My feet still hurt 24/7 but I can tolerate the pain...if I wear flats.

But here's the good news. Everything gets better. If you met me now you'd never know I have any after effects.

[AlyxLouise94 in reply to ignoreit]

Yes I did have pain in my legs and arms and still get it now from time to time and just don't know what to do with myself however I'm learning to live with it. It sounds like your septecemia was much worse than mine if you were unable to wear certain shoes for such a long period of time.. but I'm glad you've found something to help control your headaches. I've had 2 migraines in the last 3 weeks and could not get the pain to stop for what felt like forever! I have now been back to my doctors who have referred me back to my neurologist and may have to have another MRI.. fingers crossed I find something to help soon!

I'm so glad you are able to say your after effects are now less noticeable, I'm looking forward to the day I can hopefully say that too xx

[Sarahlbt]

Thanks or sharing. I have just come out of the hospital with neisseria meningitidis. I didn't have any complications like you but I'm really worried about the future regarding headaches, concentration, hearing and vision. I feel like my eyes move differently now and get sore? Hard to explain. How long after discharge did you notice your eye sight worsening, it was is an immediate thing?