Small things to remember when you are ill

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 likely to stay this way forever.

We have to be patient and allow the healing process to take place. This is just today, not for the rest of our lives. Lets just get through this day and this week as best we can and not try to prophesize or catastrophize the whole of the future.

As Shakespeare said “There is nothing either good or bad, but thinking makes it so”. Try to pull back from the thoughts which want to distract us from the present moment.

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Week 16 – My very first physio (VRT) and steroid shot

VRT gaze stabilisation exercises

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.

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Week 15 – My miserable week

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.

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Week 13 – Neuro-otologists – the specialists

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

Week 11 – My first techno-ears and the END of the ENT

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

Week 9-10 – Brain scans, sudden hearing loss and the NHS

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

Month 2 – The Dizzy NHS

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.

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Week 4 – Sudden Hearing 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?  

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Week 3 – Dizzy gets ditched

The second bout of Labs was so horrible I didn’t care as much about being medicine-free and I pretty much begged for the anti-dizzy pills. Only I couldn’t hold them down this time. I was desperate for help but since my GP had told me there was nothing anyone could do, I didn’t think there would be any point going to A&E.. The truth is, that if I had gone, they most likely would have treated my hearing loss and saved my hearing. They may have taken my condition seriously and got me seen by a specialist sooner. So many what if’s.

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