Tag Archive for deafblind

19 Feb 2017
Blind Blog

Raw

There is no witty title for this one, no sarcasm and no humour; I am without.

This is one of those few blogs where I just open my heart up.

This weekend has been full of emotion.  It was a weekend that had been planned to be fun, full of laughter and enjoyment with my daughter, my best friend and his son; thankfully they appeared to enjoy it, although maybe by the end of the time away my upset began to show.

It would appear; if only to me that by hearing less I am actually not able to see as much either!

My sight has not changed by any great degree, but when I find myself struggling to hear in a situation, I also find seeing more of a struggle too.

Maybe it is because I am not getting the sound clues that I rely so heavily on to fill in the gaps that I miss with my vision.  Maybe it is totally in my head (as some have suggested)

All I know, is that which ever it is.  It has completely thrown my idea of the world upside down and has left me feeling RAW and unable to cope.

I have cried, I have screamed and I have hidden it all from my daughter.  She doesn’t understand, mostly because I am not sure that I even do.

How do you explain RAW to a child?

And if you do know, can you please explain it to me ?

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23 Sep 2016
Blind Blog

Raw Emotions

I have tried to think of a witty title, something to grab your attention …. Words really are failing me on this post though, so just going with the simple choice.

I have been struggling for a while, I have been fortunate to be able to talk to close friends, able to ‘gauge’ the reaction.  There are a few more I wanted to tell, but time and my own worry has stopped me.

Keeping it simple …… Not babbling on.  So, do excuse me if this sounds unemotional.  I don’t know how else to say it.

I am loosing my hearing.

So, it is said, those 5 little words and it is out there…… I have known now for a little while, it isn’t easy and I am not writing this for sympathy.

I’m writing this because it is getting harder and harder to hide it.  Saying “Pardon” sometimes three or four times, not being able to hold a conversation easily as a passenger in friends’ cars.

Its confusing, I can still pick up a conversation across the room, yet not hear the person beside me.  And the prognosis …. It will only get worse.

I am still awaiting my hearing aid appointment from the nhs, it could take upto another THREE months for them to book me in, I have however spoken with my consultants and they are putting appointments in place for me to confirm exactly the kind of deafness I have.

All early indications push towards it being a form of Ushers Sydrome, a condition that is part of the RP spectrum; Retinitis Pigmentosa Is the family that my eye conditions stems from.  And hearing loss or ‘Deafblind’ is another strand.

Those with ushers are either born with hearing loss or sight loss and the other sensory loss occurs later.

As someone who was only categorised as ‘severely sight impaired’ 8 years ago, having been born with the condition …. I am feeling quite numb about it all at the moment.

Those close to me have noticed something is up, but I haven’t been able to tell them all in person, either because of Busy diaries or because I haven’t been able to find the words.

(which anyone who knows me, knows I am not often stuck for words!)

Just like my sight loss, I am not going to let my hearing loss take away my sense of humour or change the friend I am, it’s just not an easy time right now and it’s all a bit of a struggle.

Thank you for taking the time to read, I appreciates it.

xx

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