A Year On…
December 4th marked one whole year since my operation for a Cochlear Implant – where has the time flown to?!
I know it’s been several months since I last blogged; life has been quite hectic in the latter months of this year – most notably September when I got hitched and embarked on a 3 week long Honeymoon to the other side of the world!
I just wanted to recap on the years events/news and share some tips where applicable. I hope to continue to blog in the New Year now that I have more free time (I feel lost now I don’t have a wedding to plan!!).
Support & Resources; I have been incredibly lucky to work with and be supported by some fantastic people and charities and wholeheartedly recommend those with hearing loss seek support from others in similar circumstances themselves.
You will probably remember me singing the praises of the UK charity Hearing Link – I cannot stress enough what valuable work and support they provide for all ages and all manner of hearing loss. They can provide support not only to you but also to your family members via their helpdesk, email and the courses that they run throughout the UK such as their week long Intensive Rehabilitation Programme.
Other charities and resources that I have particularly found helpful over the last 18 months;
- Action on Hearing Loss
- Local Council Adult Social Services Department
- The British Cochlear Implant Group
- Ear Foundation
- Med El User Forum
- Cochlear User Forum
- Advanced Bionic User Forum
- I have also recently discovered a Facebook group called ‘Pardon? I’m Deaf’ which can be found through the following link; https://www.facebook.com/groups/493428380692725/?fref=ts This is a closed group so you will need to request to join the group. The group has some 5k members and is useful to communicate with multiple people with hearing loss in a more ‘social’ environment.
- I have recently had an article on Sudden Sensorineural Hearing Loss published in the Living With Disability Magazine. This magazine is a subscription magazine and features all different types of disabilities and some truly inspiring stories. It is worth signing up to it as it features other resources and support groups.
Obviously to those who suffer from any degree of hearing loss, socialising can be a daunting and at times isolating experience and it has definitely been a learning curve for me throughout my journey.
I have grown in confidence in the past 12 months since receiving my CI and now there is no stopping me when it comes to getting out and about but I realise for some of you reading this, this is not the case so I have recapped some of my earlier hints and tips below;
- Maintain a positive and humorous approach to life; yes there will be times when you mishear and interpret lip reading wrong but don’t feel embarrassed, share it with the person you are communicating with – I’m sure they’ll find it funny too!
- Prepare; If you are organising a get together, choose a location that will help you or at least minimise the environmental noises around you. Choose restaurants with carpets so you don’t get distracted by the sound of shoes on wooden floors, choose a seat with your back to the wall facing the restaurant so you do not have noises from behind you etc.
- Carry a pen and paper with you in case you really do struggle to hear, no one will mind if it means they can communicate better with you.
- Tell your friends and family what works for you – no one knows how better to communicate with you, than you!
- If you feel overwhelmed, take a step back and breathe. You will be able to think, and hear, better when you are in a calm and focused state of mind. The more you stress over it, the worse it will be.
Even though I can communicate effectively again and generally do not have any issues, I still need to take on board some of those tips myself; I always put myself on the left hand side of people in order to maximise the effectiveness of my right sided implant and always weigh up seating options in busy restaurants.
Something I have noticed with my CI is that the processor constantly adapts its programme depending on the environment you are in (very clever!). I notice this most when I go outside when it is really windy or if I am somewhere really loud and then return to a quiet place, the sounds and speech all seem very quiet and it takes the brain a while to adjust to the different environmental setting. I wanted to mention this because when I first noticed it I thought my hearing or my perception of hearing was deteriorating so I want to reassure all the CI users that this is completely normal!!
Above all, remember, even those without hearing loss have issues hearing in crowded places too!
For those of you who know me personally, you will know that I love to travel where possible and this was a situation I was really concerned about both when I lost my hearing and also when I received my CI.
Travelling with a severe hearing loss can bring a lot of safety issues such as not being able to hear and follow safety guidelines, missing destinations, being vulnerable in social situations especially where foreign language is involved but do not let this put you off travelling and experiencing new adventures – just prepare, prepare and prepare some more!
Below are a few hints and tips I have picked up along the way over the span of 10 flights in the past year;
- Research where you are going, whether there is a hospital/ENT department nearby in case of emergencies or a CI clinic if you have one.
- Bring plenty of spare equipment; whether this be batteries for hearing aids or spare coils and leads for a CI.
- If you are a CI user, make sure you have proof of this (your patient identification card and CI user manual should suffice) as you will need to show this at the airport.
- Ask to go through the body scanner or have a ‘pat down’ to ensure your CI will not get corrupted going through the scanners. Ask your hospital for a card explaining the CI in multiple languages for even easier communication
- Use the Holiday Loaner Scheme provided by your CI manufacturer for piece of mind. Also bring a copy of your programme map in case you need to have it remapped in an emergency.
- Tell the staff (whether that be airline staff or train staff etc) that you have a hearing loss so that if there are any safety announcements or queries, they know to talk to you separately and/or alert you to your destination.
- Buy a guidebook and plan your trip thoroughly, this will mean there is less chance of you finding yourself lost. A phrasebook would also be useful if language will be a barrier.
- Most of all, try to relax and enjoy your new adventure.
My life in the past 12 months;
Since receiving the CI in January 2015 and scoring a whopping 95% on my speech perception tests at my three month review I have had an absolutely amazing year; from my inaugural flight to Copenhagen for 23 hours, having my article on Sudden Sensorineural Hearing Loss published in the Living With Disability Magazine, volunteering for Hearing Link, being spoilt on my Hen Weekend, getting married and honeymooning in Dubai, Australia and Fiji! 2016 will have a lot to live up to!
One thing that I have learnt throughout the last 18 months is that hearing loss does not define you, it just changes your outlook on life and how you cope with challenges you may face. Do not let it hold you back from doing the things you love.
I’ll post again in the New Year with some fresh material, if there is anything you would like me to cover or discuss, please do email me, I’m all (robot) ears!