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.
Thankfully my friends and family (still hadn’t heard from boyfriend) were all immensely supportive and it’s touching how (most) people, once they know, are willing to make a special effort to speak v.e.r.y c.l.e.a.r and L.O.U.D. But there is also a sense of it not being sustainable; that people can’t talk like that all the time and there will come a point when everyone will go back to normal and you will be left out of the pack, not able to participate because you’re one sense short of a full deck.
Now all I could hear was the things I didn’t want to hear, like the noise of traffic, refrigeration or children screaming. Those little things we take for granted like knowing when the stove is boiling over, or the bath is running, or someone needs you…were all fading away. Now when I went outside, there was no wind, no trees and no birds, just the constant noise of my orchestral tinnitus. My world had somehow shrunk into me. And I had had to shrink into it, because to be in high-speed surround-sound life with my dizziness and deafness was far too disorientating and shocking to deal with.
On a positive note I could still hear on the phone and watch films through headphones in my good ear. These were important pleasures and functions that connected me to my friends and kept me entertained.
Being someone who prides myself on being a highly capable, multitasking, top speed, super women, having to hobble around on a stick isn’t really a look I’m too keen to wear. I tell you, even the old people overtake me!! But what can you do? I am what I am and this is where I am and I have no choice but to manage it the best I can and surrender to the experience one moment at a time. I’m grateful for the support of my loved ones (particularly my mum who deserves a big mention for her tireless acts of service, kindness and unconditional love).
Here is a video of me trying to walk straight in the park without a stick, around 3-4 weeks after I first got ill…
So, back to the NHS process…thanks to my powers of nagging and begging I was able to bring forward my first hearing test appointment to the next week. I told the receptionist that I was hard of hearing and to come and get me when they called my name as I might not hear. Off course, just to upset me, they didn’t. Instead the audiologist stood there calling my name for a while until I saw him and realized the extent of my deafness and burst into tears. He was very understanding and then put me in the sound booth played lots of different beeps into my ears which mostly got camouflaged by my tinnitus and I was sent home to wait another week for my next appointment.
After weeks of eager waiting for the ENT appointment, it turned out I wasn’t getting the ENT after-all, but a GP covering for him. Nevertheless he did all the necessary frowns, looking in my ears and evading questions, and gave me the corticosteroids which I should have been given weeks ago. He referred me for the bog standard MRI to check it wasn’t anything more serious and a blood test.
A week later I hadn’t had any effect from the steroids. I returned for another appointment, this time with the real ENT. He was frustratingly laid back and said that there was nothing he could say as I hadn’t had the MRI scan yet. Despite this he did manage to tell me in quite a frank way that he thought I have Menieres Disease and, without giving me any explanation of what that meant, prescribed me Betahistine (SERC) and told me I would probably have to take this for the rest of my life. I was pretty horrified at this because firstly I am aware of the potentially lifelong implications of Menieres Disease, secondly because this man has just thrown a diagnosis at me which doesn’t seem to have any basis and thirdly because I don’t want to be dependent on a drug. When I asked him why he thought it was Menieres he said it was because Labyrinthitus doesn’t affect hearing. (!!) Well, that aggravated me because you only have to look at any health website, including the NHS’s own to see that this is not correct. It became apparent at that point that my Ear, Nose and Throat specialist didn’t seem to know the basics about what Labyrinthitus is and I pretty much lost faith in his expertise. I asked him for Vestibular Rehabilitation Training (VRT) (the crucial exercises I need to get my brain to adjust) and he said he doesn’t do it and I asked for hearing support and he said “later”.
Betahistine is a heavily debated drug with little evidence of its positive medicinal effect, however it has also shown positive results now and then. Given my assessment of the evidence I decided against taking it for the time being. I decided against suppressing my vestibular system in favor of helping my brain to adjust naturally through exercise.
It’s really important to educate yourself about your illness and any other similar ones so that you can discuss it and ask the right questions of your doctor. In some ways I was made to feel bad about asking too many questions or disagreeing with ‘the expert’ but the truth is you have every right to ask questions, demand clarification and challenge. It’s your body and you should have a clear understanding of the decisions and diagnosis being made and the implications for you. You have a right to ask for things which you think might help your healing and if you are dismissed with no clear explanation, either ask again or ask someone else. I would also propose that you record your appointments. Often its difficult to absorb all the information you’re given at the time so this gives you a chance to re-listen afterwards and check what they said. I wish I had recorded mine so I could play you some of the strange answers I got.
A week later I had my excursion to Watford General for my very first MRI scan. Many people say its a very noisy experience and claustrophobic but because I’m deafened I didn’t hear anything and I actually found the vibrations quite relaxing. I knew what to expect because I’d done my research and I simply lay still and meditated for 30 minutes. I didn’t find it a difficult experience in any way and was happier knowing that it was magnets being passed over my body and not radiation. They also didn’t give me the dye so that was one less worry.
So in essence it took a whole month to get a MRI scan and steroids, which is probably quite fast by NHS standards. But when you’re ill, in need of help and some answers, every day is a long time. Each day was a long wait. Personally I would have liked to have spared myself the torment of the wait and just gone private but I just didn’t have the resources to follow this route.