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.