I survived meningococcal septicaemia AMA

[MyBearIsCalledTeddy]

I am a long time lurker but this new AMA topic has promted me to join. I am loving all of the threads.

Aged 2 I developed meningococcal septicaemia. I have lost both my legs, my left arm and left ear. I have zero hearing (can't hear a sound) and zero sense of smell.

65% of my body has had skin grafts. I look like a burns victim.

My parents were told on a number of occasions that I would not make it.

30 years on, I'm married and have 5 wonderful children.

Do you feel lucky? In 1997, my 18 year old sister contracted the same miserable disease and sadly died. It was scary how fast the infection took hold. You won’t remember any of it since you were two obviously, so I guess, do you feel normal as that’s what’s normal for you? If you get my meaning?

@doodlejump1980 Do you feel lucky? do you feel normal as that’s what’s normal for you?

Firstly, I am so sorry your sister passed away. It's a truly horrible disease. I do feel very lucky to be alive but more so I feel lucky that I can help others by being here to fundraise. I have raised over £10k so far for Meningitis UK. I do and I don't feel normal. There is no such thing as "normal" I don't know an different to how I am but at the same time I know I am different and would love to be able to hear, smell, walk but I don't know what those things feel like.

@zzzzz Thank you :)

Do you feel anger towards anti vaxxers?

How did you and your husband meet?

@Slanetylor Do you feel anger towards anti vaxxers?
Yes. Pure and simple. Why on earth any parents would risk their child going through what I and many, many hundreds of children/adults have gone through is beyond me.

@beeefcake How did you and your husband meet?

We worked together and 3 years. I had fancied him from Day One but didnt think he, or anybody else, could/would fancy me. After I left the job we started to meet up for a drink and within 2 years were married and had our first baby.

Your story is inspiring. 5 children is a big task but your world must be filled with love.
Have you ever written your story?

Well done for fabulous fundraising. I’m glad you made it 😊

Do you use any prosthetics OP?

What do you think about the quality of NHS prosthetics (if that's applicable)?

I'm asking because I've seen so much fundraising for "good" prosthetics and whilst I know some are incredibly expensive I find it hard to understand why something so fundamental to someone's quality of life should have to be bought privately (especially when multiple prosthetics are required).

I'm also in total awe!!! 5 kids, fundraising etc - are you superwoman!!

What was school like for you?

I wore prosthetic legs during high school but they were uncomfortable. I stopped wearing them when I was at uni. I have an electric wheelchair now.

I went to a school for deaf children and for the most part it was fine...it was out of school I was bullied.

You sound amazing OP. You must have survived a lot subsequent to the actual infection. My daughter had meningitis at 10 days old so it's something close to my heart.

Your husband, family and children are lucky to have such an inspiring person in their lives.

I'm sorry if this sounds rude, but how do you communicate as a family if you are deaf, given sign language (I thought but may well be wrong) requires two hands?

Do you lip read?

Apologies if this is too personal but I'm trying to understand the dynamics of how you communicate as a family.

Also do you have care day to day outside of your husband to help you and the children?

Not personal at all. A lot of BSL can be done with one hand. My children, husband, parents and siblings are all fluent in BSL. I lip read too. I always have a small whiteboard and marker pen with me for if I need to write something down. It's actually attached to my wheelchair so I don't forget it!

I don't have any help with the children but we do have a cleaner who comes three times a week and i have a carer morning and night to help me to wash and dress/undress... My husband sorts the children whilst my carer is here.

My husband works from home now and all the children are in school.

Me too! I was 17 and less badly affected than you.
Do you reflect on it often and has it changed your outlook on life? I know it did for me as I was 17 so there was a very clear before and after iyswif but wondered if that was the same for you?