I’m sorry for not blogging earlier about my progress with the CI. I’m afraid there is none and I have been dreading writing about it.

I have a lot of worries about various situations surrounding the CI and I’m finding myself getting more and more stressed.

The biggest worry is that it’s not worked. But I’ll get onto that in a minute.

The other big worry that is bothering me a lot, is that I don’t think that people really think I’m giving it a proper go. Mostly, it’s because I’m not wearing the CI when they see me. To be fair, I can see why they think that. But the fact that is of utmost importance here is that I simply cannot wear it in social situations. I cannot understand a thing. I rely 100% on lip-reading which is not only hard work, but I’m having to lip-read with the constant babble of noise on top of that distracting my concentration which is soul destroying when I know I can cope better with my hearing aid on its own.

I AM wearing it, but I am not wearing it all day every day like I do with a hearing aid, for the following reasons:

  • It is intolerable to wear for long periods of time
  • I get a headache after half an hour, let alone for hours at a time, even if it is turned down low
  • My Tinnitus is at it’s worst whenever I am wearing it to an extent where even after taking the CI off, it will still be present in my ears for a further couple of hours
  • I cannot understand anything anyone says, it takes over any quality I am getting with my hearing aid in the other ear
  • All sounds are muffled, warbled and distorted and I can make out no clarity of any sounds which affects my concentration and patience
  • Wearing it is exhausting, I get very tired and am easily irritated when wearing it, so while wearing it, it affects my relationship with the most important people to me in the world

On top of this, there are the additional annoyances that I can’t tie my hair up when I am wearing it as the pad just falls off. I can’t even tuck it behind my ear. I have very thick hair and it’s about shoulder length at the moment. The pad has two double strength magnets in it and even then, it falls off quite easily. I don’t suit shorter hair so it’s very hard self image wise to deal with the idea of cutting it short to help. Doing my work or jobs around the house and also dealing with a hair grabbing small child with my hair not tied back is a nightmare. A headband does the job the best it can do, but it’s not ideal.

At my last appointment, the audiologist set the processor with three different programmes. They are all very different and react to different frequencies in different ways. She also lowered the higher frequencies, to try and reduce the shhhh sound I get enveloping everything I hear.

I have made a conscious effort, since this appointment to wear the CI even more, no matter how hard it has been. I have been following a rota on my fridge to wear it at certain times on different days for increasing periods of time. Unfortunately, this has made me rather an unpleasant person to be during those patches of the day. Whilst wearing it, I am irritable and have been snapping at the slightest thing.

At the end of the day, it’s unbearable to wear and 3 months after switch on, it is still no better than it was on the day my CI was activated. I know that 3 months to some people is “nothing” in terms of CI progress, but everyone I have come across, has had some form of progress by now. I have had none.

I am SO sorry for letting people down, the readers of this blog hoping for CI reassurance, the readers who are my friends, wanting the latest news, supporting me every step of the way. I hate having to say this but: I really do not think it is going to work for me.

Please remember, that I did not go through all of this to give up at the first hurdle – I really have tried. The operation just before Christmas, being away from my children for two nights, the dizzyness, not being able to drive and horrid, constant Tinnitus attacks that plagued me for weeks. The bald patch on my head which is still growing back and everything that came with the switch on; all that, has really been one of the hardest times of my life.

I really have, and AM trying my very best. I really wanted this to work. It was going to change my life for the better in so many ways. My heart has broken, that it hasn’t done what I dreamed of. I’m not sure if everyone will understand where I am coming from, but I hope you do, or will try to.

I still believe in the CI. I have met too many people where it was the best thing in the world for them, not to. I also think, that if the CI was in the other ear, where I currently don’t have any distortion with my hearing aid, the CI would work wonders. But it’s too precious to me, I daren’t risk it.

If you have approached this blog to get information on CI’s and how they can work for people, please do not be put off. I have many contacts on my blog roll that I can pass on to you. I am the only person I know, that it has not worked for.

Perhaps I should put a little star next to the last word on that sentence and link it to the next paragraph.

*The journey isn’t over just yet. This blog post may be premature and I dearly, dearly hope so. They are still rooting for me at the hospital and keep telling me to persevere. They seem to think there is hope left, even if I am only clinging to that hope with the shreds of my fingernails. However there comes a point in everyone’s lives, where the limit with anything hard going, has to be reached and said “You know what? I think this is as far as I can go” and I think this may be coming soon, for me.

Perhaps, if I wore the CI every day for 2 years, maybe then one day, it would suddenly work for me. Or perhaps once the girls are older, my life is less stressful in other areas it’d work eventually then – you never know. But I know that I can’t put myself through this on a daily basis until that happened, knowing it is only ever an “IF”.

I’m so sorry, but my sanity just cannot take it much longer.

Bx