Monday 27 February 2017


Balancing act



Imagine - You're  standing perfectly still but your world is spinning around you. I don't mean figuratively but literally! You need to hold on to something to stop yourself from falling. You feel sick , you can't focus properly and your start to panic , your mouth drys up and you can't swallow.
 If you sit down, It’s not so bad. Bright lights affect your eyes, big screens , lots of noise , too much traffic , too many people all make your head go dizzy and you can't understand what is going on. You start to get confused and all you want to do is shut the world out and cry.

Around 6 years ago – I was diagnosed with something called VESTIBULOPATHY WITH VISUAL PREFERENCE. Caused, they say, by damage to the inner ear. So it not only affects your balance but your sight too, because the brain has to re- learn  how to balance and focus again. It took a while to get a diagnosis but the relief I felt when the ENT (ear,nose and throat) consultant told me what it was, was incredible., I just cried, in fact I sobbed in his office.
 For the first time in months since it first started someone understood exactly what it was I was going through and it all made sense to them. For months before that I was back and forth to the GP who thought it was stress, then depression and had signed me off work with that and told me to go have a holiday.  A bit difficult to have a holiday when you can't even walk in a straight line or get in the shower without help. 
  
I just want to share my experience of this condition because there's not a great deal of information out there unless you know where to look. I want to hear from you  about how it affects you on a day to day basis . It's not a life threatening condition as such but it certainly does turn your life upside down in every way. I became too scared to go anywhere, to be on my own and places I did go to , I did with caution.
That time it affected me for almost a year. I had to take 8 months of work. It never disappears but you learn to deal with it. Until of course you get another bad infection and it comes back with a vengeance. And you have to start all over again. Which is where I'm at right now. It doesn't seem to be any easier knowing what I know from the last time, I guess panic sets in and all the fears of falling and hurting yourself and people just not understanding come flooding back. After all it's not something you can see - it's not like having a physical injury or disability that’s obvious. The amount of times people have said  … “well you don't look ill- in fact you look really well” 

I'm hoping to share via this blog not only my story but stories of  others that I know have the condition, and maybe talk to the professionals I've met to get a better understanding of it and how to deal with it. 
I’d love for you to share your thoughts and this blog to others who maybe going through it, and often feel lonely, isolated scared and confused. 

10 comments:

  1. Whenever you feel dizzy, I'd be honoured if you were to lean on me. Miss you! Jim xx

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  2. Rups. I know how hard it has been for you to write this. You're very brave to share your story and hopefully help fellow sufferers where to go for help and advice. You know you can always lean on me. I don't have the dizzies as bad as you, but from my experience it's yuk!!

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    1. Thank you Natalie. I do hope it helps others. As you know it can be a lonely expereicnce

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  3. Rupal I am so glad you are telling your story, people need to know how this invisible illness effects the lives of many.

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  4. Hi Rupal. I know someone who had a similar condition but is well now. You are a fighter and you will come out of it for sure. Best wishes.

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  5. What doesn't kill you makes you stronger! Believe & the universe will align with your thoughts and sync with it, whether those thoughts are bad or good.
    This is a step forward, it can only get better !!

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  6. Hi Rupal, really sorry to hear you've not been well. I've been suffering from vertigo since Christmas and I'm still off work. I first developed symptoms after a vrial infection and at first I couldn't stand up or walk around without feeling dizzy and wanting to throw up! I'm feeling alot better now but still find it diffcult looking up and down quickly at which point things feel very strange. Like you, I feel very isolated and lost confidence in going out or doing normal things. Best wishes and stay positive.

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    1. Thanks for sharing Panks. Glad you're getting better. Hang in there.

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