Wednesday, 29 June 2011

A personal post

I figured that I write a lot about shopping, a bit less about food, and an AWFUL lot about Squeaky, but actually very little about me.  And maybe I should change that.  There's a few things that make me who I am, that maybe the world should know.

Right.  When I was 12 I had meningitis.  I don't really know the full details, there's a lot they don't tell you, even at that age.  As far as I understand it, I had Pneumococcal Meningitis, which is the variant that's immunised against with the PCV vaccine.  If that vaccine had been available or generally administered 30-odd years ago, I wouldn't need to be writing this post now.

I'm here.  I'm a survivor, ok?  I have severe hearing loss in both ears, with no indication of the long-term outcomes, whether it'll stay the same or not.  I don't know what tomorrow will bring any more than any of us do, but I know that it'll never get better, the nerves are permanently damaged and it's not the sort of problem that can be treated with surgery.  (NB, the level of hearing loss edited on 6/8/13 as I asked the audiologist for the official level)

That's kind of why I didn't try to go to CyberMummy.  I'm not good at crowds, I'm not good at having conversations in loud rooms, or working out different accents.  I worry that people will think I don't like them, or that I'm being rude because I'm being quiet & not joining in.  I worry that I'll get something wrong because I misheard and people will think I'm stupid. I worry all the damn time about something or other.

Having Squeaky gave me a whole new set of worries.  Would something be passed on to her? (how, I don't know, it's like a scar, and I didn't pass on the scars of 2 broken ankles!) Would being pregnant somehow do more damage to me?  Would I be able to hear her crying?  Will I be able to understand her when she starts to talk?  I still don't know the answer to that last one.

I could have got more help than I have.  But that would have involved talking to social services.  And that's not something I'm prepared to do.  I'll have stopped needing any particular bit of help by the time anything arrives, and I really REALLY don't want them in my life if I don't have to.  If I didn't have SqueakyDaddy, yes I would probably have to suck it up & accept that it's necessary, but as he's here, they're not.  And that's the way it's staying.

So what am I saying with this post?  Apart from that I'm pro-vaccination?  Meningitis kills.  Even when it doesn't, it still turns lives upside down.  Know the signs.

Babies & toddlers                                             Children
Fever, Cold Hands & Feet                                   Fever, Cold Hands & Feet
Refusing food, Vomiting                                        Vomiting
Fretful, Dislike handling                                         Drowsy, difficult to wake
Drowsy, floppy, unresponsive                               Confusion & irritability
Rapid breathing                                                     Severe muscle pain
Tense, bulging fontanelle (soft spot)                        Severe headache
Stiff neck                                                               Stiff neck
Dislike bright lights                                                 Dislike bright lights
Convulsions/seizures                                              Convulsions/seizures
Rash that doesn't go away when                             Rash that doesn't go away when
   pressed with a glass                                                 pressed with a glass

Not everyone has all the symptoms, and they can show up in any order.  If you suspect meningitis, phone your GP or NHS Direct or go to your nearest A&E.  Please.

Key facts

  • Babies, toddlers and young children under five are an at risk group for meningitis, with over 50% of all cases occurring in this age group.
  • With 2,500 cases of bacterial meningitis reported in the UK every year, more than three babies, toddlers or young children will be taken ill with meningitis every day.
  • Meningitis kills more children under the age of five than any other infectious disease in the UK.
  • Meningitis is the disease parents fear the most.

Why are babies and children at risk?

  • Babies and young children are particularly vulnerable to meningitis as they cannot easily fight infection because their immune system is not yet fully developed.
  • Babies and toddlers can’t tell you how they are feeling and they can get a lot worse very quickly. Keep checking them
For more information visit Meningitis Trust

I have not been asked to write this post, or been offered any incentive to do so. It is simply a topic that is close to my heart, for obvious reasons


  1. Back when I was 16, I dated a young man who had meningitis as a small child. Like you it affected his hearing, and he was almost entirely deaf. His only memory of the illness was feeling like someone had stuck a sword down his neck/back.

    Thanks to him, when The Kid was little I was VERY paranoid about meningitis.

  2. I didn't know your hearing loss was because of illness that late in life; I guess I thought you'd been born with it. I do know what you mean about seeking out assistance. Boy, do I know.

    One of my Mom's older sisters died of meningitis at age 3 (they call it spinal meningitis, but I don't know anything more than that). This would've been about 1936ish, so of course my Mom never knew her. And there was no medication for it then.

    When the doctor diagnosed her, he told my grandparents to immediately remove their other children from the house, so they sent them to stay with my Grandma's sister. And then the doctor told them they were also very much in danger of contracting it, and that since she was going to die no matter what they did for her, they should just leave her alone in the house to die.

    Which, of course, they refused to do. I'll refrain from giving any of the few details I know, but it was a horrific, prolonged death that affected both of my grandparents all their lives.

    I think I mentioned to you that Lorraine is a family name; that was this sister's name. She was named for a sister of my Grandma who had also died in childhood. You can therefore understand why my Grandma was absolutely horrified when my aunt Mollie decided to give the same name to her daughter. Luckily my cousin Lorrie is still alive and kickin'.

  3. Great post about a really serious subject! Having met you I think you will cope brilliantly at Cybermummy next year...if you hang out with me no-one will even notice if you get anything wrong because I'm always getting the wrong end of the stick!!! xxx

  4. FWIW, having met you in groups and one-on-one, you really don't seem to miss a whole lot. Really really. The first time I met you - in a big group of crazy internet people - I didn't even realise you had any hearing loss. (Also, if you ever did miss something, I'd think it was my fault for mumbling or not getting your attention properly!)


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