Ear We Go!

IMG_0782 I am currently awaiting surgery for my fourth onset of a middle ear disease called ‘cholesteatoma’. http://www.nhs.uk/conditions/cholesteatoma/Pages/Introduction.aspx    This destructive disease is effectively a ball of skin cells which grows inside the ear eating everything in its path, including bone.  Nice!  Although the ball of skin cells resembles a large tumour it isn’t cancerous, but it must be removed surgically.

Most cholesteatomas are slow-growing but they do cause a lot of damage.  In my case the recurrent disease has destroyed my balance organ and made me almost completely deaf in my left ear.  The surgery I’m waiting for will cure the cholesteatoma but in doing so it will make my balance worse and leave me with no hearing at all on my left side.  If untreated the disease will eventually find its way into my brain, so surgery is my only option.

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So I’m in a strange position at the moment knowing that I’ll have an operation next year which could severely compromise my mobility and independence – at least in the short term.  My surgeon told me that I will have to learn from scratch how to walk and balance, without a balance organ.  With no useful sight, and therefore no visual points of reference to help me walk, I am quite nervous about what it will be like post-surgery.  So I’m taking a proactive approach in my preparations.

At the moment my balance is quite poor, and I walk as if I’ve had three too many.  I’m often stumbling and swaying, trying to counteract the effects of vertigo.  My balance began to deteriorate in March this year.  At first it unsettled my guide dog Dash, and he lost a lot of confidence.

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He takes his work very seriously and I think he felt responsible for my tumbles and stumbles.  So I had to scale back his harness work and rely on sighted companions to get out and about.  But over the last few months Dash has adapted really well and now walks very cautiously, checking constantly to see how I am.  He no longer gets overly anxious in harness, and if the ground looks uneven he’ll simply stop and wait for me to adjust my balance before continuing.  Dash has always had amazing intuition.  My Guide dog trainer has advised that we don’t go too far without accompaniment as I have had a few nasty falls which potentially put Dash in danger as well as myself.  It’s not easy adhering to this advice because a guide dog is essentially a freedom ticket.  So restricting our walks has been tough.  In September I learned that things are going to get even worse from the mobility point of view, and this was a real knock.

But I must find a way round it.  In Summer this year I met a lady with MS who was training with an assistance dog, and she mentioned that Guide Dogs were making her dog a special harness to help her balance.  I remember wondering at the time if this might come in useful for me.  Subsequently I have done some research and discovered that in the US (and increasingly in the UK) there are ‘balance dogs’ trained specifically to help people with chronic balancing problems. http://www.keystonehumanservices.org/susquehanna-service-dogs/balance-dogs.php

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In my view Dash has already stepped up, of his own accord, and helps me in ways beyond his guide dog training.  But I am going to make enquiries about whether his harness can be adapted so that I can use it as a stabilizer if needs be, when we’re out and about.

I have spent most of today researching walking aids.  I don’t need a walking stick but I do need something to stop me toppling over when I lose my balance.  This will help Dash to stay confident and keep us both safe.   But trying to find something discreet, aesthetic and useful has been really hard!   After much hunting I’ve come up with a Sabi walking cane http://www.designed2enable.co.uk/product/sabi-roam-sport-cane  and a tri support ferrule, which I need to buy separately. The ferrule has three flexible feet to make the walking cane even more stable.   I want something that I can hook over my arm on stand-by to access quickly if I start falling.

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This situation reminds me of when my sight was starting to fail and I was not safe going out and about without a mobility aid.  I was crippled with self-consciousness and hated every second of my first journey with a long cane.  I felt so blind, even though I did not think of myself as blind.  I suspect that my first walk with a balance aid will make me feel really disabled, even though that isn’t how I define myself.  But in these situations we’re faced with a stark choice.  Accept it, embrace it and get on with living.  Or deny it, hide from it and never set foot outside the front door.  If I don’t accept that I need to use a balance aid I will not be able to go out safely with Dash, and we’ll lose our freedom.  Having had a guide dog since 2008 I am not about to give up my mobility and independence!  Absolutely no way.  Someone said to me today that using a walking aid isn’t a sign that I am disabled, it’s a tool to enable me to carry on regardless.  And she was right.  We all need to make adjustments as we go through life and I’ve always felt that obstacles are there to get around not to stop me in my tracks.  So I need to put my philosophy into practise.

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Recently I spent a few days at the Calvert Trust activity centre in Exmoor http://www.calvert-trust.org.uk/exmoor/exmoor  taking part in a series of outdoor challenges.  I am by no means athletic but I completed every single challenge, including rock climbing.  The great thing about going somewhere like Calvert is that it reinforces a ‘can-do’ attitude and that ‘can-do’ ethos stays put in your psyche for some time. So back home in Hereford my priority is to get back into my long solo treks with Dash and find a way of overcoming my deteriorating balance.  My Guide dog trainer is visiting in a couple of weeks time so I hope to show her what Dash and I can do!  If she sees that we are safe when we’re out together then I am on the way to freedom again.

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My operation will not be soon, given the crisis that Hereford County Hospital is in at the moment.  So I am going to use the time wisely and prepare myself for what lies ahead.  So far on my list I have: Find out about adapting Dash’s guide dog harness; Start using a balance/walking aid; Make my home environment clutter-free and safe; Learn the Alexander Technique   http://www.stat.org.uk

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3 comments on “Ear We Go!

  1. Hi Wonder Woman! Well done on all counts! Climbing wall looks awsome! Glad you got your writing going again Ever onward and upward. See you soon….Jenny xx

  2. Pete Hulme says:

    Hi, Claire. Just read your latest post. I’m so sorry to hear about the latest testing health problem. Balance is so important. Tried to text you but it looks like you’ve changed your mobile. Warm regards, Pete

  3. Torie says:

    HI Claire. Oh goodness that sounds scary. I hate not being able to balance. The disease sounds scary to have.

    Good luck with the ajustments 🙂

    Torie

    >

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