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. It turns out that physiotherapy is actually quite affordable in the UK so I just went private – I so wish I had done this months ago.
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 so difficult to hear anyone speak because as soon as more than one person in the room talks I cant hear a thing. It’s like my hearing aids just cant distinguish the voices and mashes all the sound up into one noisy rumble. So much of my understanding now depends on the visual element of communication that I can’t keep up on conversations other people are having because I cant see everyone’s faces clearly. It’s disheartening. I feel so lost in this new world without my natural hearing – everything sounds so distorted, harsh and distant. Its such a struggle to deal with the noise, deafness, tinnitus, imbalance and oscillopsia that I pretty much want to just stay home.
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 who seemed to have time for me.
I was passed through a series of tests specifically designed to assess my balance and hearing. These included rotary chair testing, various audiometry tests and Continue reading
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 already gathered info on packages and prices. They all seemed to give money back guarantees so I decided to go for it and spend £3,500ish to help me with this new experience of isolating deaf-tinnitus. I was fitted with my new pair of Phonak Q90’s from Boots and was absolutely delighted Continue reading
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 it no way makes up for lost hearing, it definitely improved my ability to hear others in a one-on-one situation; saving them from having to shout. The downside is that you are constantly connected to a machine and wires so its not a long-term solution. I can Continue reading
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. It’s isolating and if you are going through that, I feel for you and I understand. I’m sorry for your loss.
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, high dose corticosteroids (either tablet or injection) need to be given ideally within 72 hours (but also can be effective up to 1 month). Why do I observe that this is happens for people abroad but not for us in the UK?
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 so disgustingly dizzy that I’d fall to the floor and not be able to move again for hours. I remember him wrapping me up in blankets and sliding me into the kitchen so I could catch some of the sun rays coming in through the window. I must have looked pretty scary laying there half dead and I know it really shook him up to see me like that. But we both had faith in my healing and knew it was a blip that would pass soon.
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 with you in the hope that by doing so I will spare you some of the cr4p I went through and you will get the support you need quicker than I did. .