Hello to my bilateral oscillopsia friends! What started 6 months ago as a fever, turned to a cold, to a sinus infection, to an ear infection, to some hearing loss (1 ear only), and left me with permanent inner ear nerve damage and the HELL we all live in called “Oscillopsia”. Also, I have no […]
I’ve tried to keep all my posts mildly upbeat, considering the circumstance. I don’t want to leave a trail of misery in my midst nor give those of you out there in my position any reason to lose hope. But I realise that in doing so I’m also putting a big smile on a tragic […]
One night In late April 2012 I awoke about 3 or 4am with the worst headache I’ve ever had. I couldn’t sleep, so got up and waited until the doctors office opened and got there as soon as it opened at 11am which seemed like an eternity. The doctor said I had an ear infection […]
I cant believe its been 5 months since I became ill. Time is passing so fast and all I’m doing is going to appointments back and forth trying to get my life back on track. There is so much I want to write about but I just haven’t had the time unfortunately as I’ve had […]
I’d like to open up a space on this blog for other people to share their experience with vestibular issues, labyrinthitus and hearing loss. It can be so isolating as the people around us don’t understand what we are seeing, feeling and hearing. Personally I so appreciate connecting with others who have had similar experiences and […]
1. This is not forever It feels like this has been going on forever. It feels unbearable – the pain, discomfort, restriction, isolation, helplessness and loss of who we were and life as we knew it. The truth is that we don’t know the future nor how long our healing will take, but its not […]
Yesterday I had my first Vestibular Rehabilitation Training session – hallelujah. I was eager for this appointment as so many people have told me they started getting better once they started VRT exercises. I gave up waiting for the NHS because life is just too short to be waiting so long for these essential appointments. […]
My family wanted to take me out last weekend so I agreed to brave a restaurant to see them. I searched out a place that would be carpeted, spacious and quiet to lessen the impact of background noise on me. Luckily I chose well and the restaurant was quiet and empty. But even still it felt […]
This is what the world looks like through my eyes, unless I am sitting very still. Thankfully its no longer a spin (like in the acute stage), but its still very disorientating. Its horrible to not see in focus around you.
I can’t tell you the relief I felt to finally get my appointment at University College London Neuro-otology Department. Despite all the effort of travelling into London on the underground with vertigo and new hearing aids, it was all worth it because finally I was being seen by people who knew what they were doing and […]
By the end of the next week I just couldn’t cope without a hearing aid and decided it wasn’t an option to wait a minute longer for the NHS to provide me one. Over the last few weeks I’d gone for free consultations with a few private hearing aid centres in my area and had […]
By now I had got myself a Sonido Listener to get by in the world. This is a handheld electronic device which amplifies sound. It has an inbuilt microphone at one end which you point at people to make them feel important, and a headphone connection the other end which you hear them through. Whilst […]
I don’t know how to describe the feelings you have as you begin to notice all the ways in which you can’t hear; all the ways in which you’re now excluded from life which is lived interdependently with others. It’s like permanently being the one who didn’t get the joke whilst everyone else is laughing. […]
This week I found out that any sudden, noticeable reduction in hearing should be treated urgently as a medical emergency. It should be treated with the same importance that sudden blindness would be. So how come this is not the case in the UK’s NHS? In order to have a reasonable chance of saving someones hearing, […]
For the next few days I carried on laying horizontal . I slept a lot, researched a lot and found innovative ways of functioning without moving my head from the pillow. Those days that I had to make a bathroom visit, were traumatic because I’d get myself there with my boyfriends help, but then get […]
On Fri Feb 13th 2015, exactly 3 months ago, I was busy finishing off things at work and eagerly looking forward to spending Valentines weekend with my boyfriend. I was feeling a bit tired and run down and so we had decided to try and arrange a last minute spa getaway as a relaxing and […]
This is my very first forum post ever! I’m glad I finally got round to doing this and getting my head round WordPress. I’ve been recovering (or not) from bilateral (bloody unlucky) Labyrinthitus for 3 months now. I’ve learnt so much whilst travelling the tedious, process-driven, time-consuming NHS path and I want to share this […]