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.

I notice in myself an envy towards everyone else’s natural and easy freedom, to go where they want and communicate freely. Like every aspect of health you just don’t appreciate it until its gone and whilst I know everyone has their own battles to fight, I want to have that freedom back. I want my vitality – my sparky, chirpy, physical, playfulness. Many people have been complimenting me on how positive I have been and how well I’ve been coping and I do think I’ve handled it all pretty well so far. I’ve really focused on getting healthy and looking after myself – diet, therapies, herbs, naturopathy (will write more about that soon). But I feel like my patience, strength and grace are running dry. It feels like I’ve been in isolation for a very long time and am turning into some species of aged, decrepid cave dweller with no actual ‘life’.

Despite the changes that have occurred in my life, I still count my blessings, for all I do have, for every single function of my body which is working well, for my comfortable home where I can rest and those around me who care about me. Things could be a lot worse and I have to remind myself of this if I start getting too self-pitiful. But mostly my focus is on being as self-compassionate as I can be through this. This is a shitty time and no-one else is going to care for me but me. It doesn’t matter how much I try to explain it no-one seems to really understand. So at the end of a bad day there is nothing else I can do but have some sympathy for myself and pick up the broken pieces of my self up of the floor and try again.

and so… I was writing this last week, after my family lunch…. and I suddenly realised that the audio I was listening to through my hearing aids seemed incredibly lop-sided. I switched ears and tried headphones but still there was no sound in my right ear. Nothing. Nada!

It happened. It dropped again. Just as I was writing about being grateful for what I have, I lost probably the most important thing to me right now, more hearing.

So I set off with my mum to A&E.

All I can say is that the whole week since then has been a struggle. I’m all out of positivity. I’m tired. I’m fed up. And I’m angry at life for taking my hearing. I’m tired of feeling like I am doing this all alone.

I had to almost beg A&E for steroids. After 3 hours of explaining the same story 100 times, I got them. I was asked to return a few days later for a hearing test. This confirmed my hearing had dropped again in my right ear. They proposed making an appointment for me to see the ENT in a few weeks time. Over and over again I had to really stand my ground to get anyone to understand that sudden hearing loss needs to be dealt with quickly. Its like the majority of people just didn’t know. Finally after a lot of pushing I got to see an ENT, who agreed to speak to Dr Agrup at UCLH, who agreed that I should have steroid injections into my ears. She said its the only treatment they have and we must try it.

Now my hearings dropped, I struggle to hear with my hearing aids full blast so I went back to Boots in panic stricken tears. He turned the power up as high as he could and added a power receiver yet still I cant hear anything in that ear. This is scaring the hell out of me. I’m so disappointed.

The fact that my hearing is deteriorating could mean there is an auto-immune element so I got back onto UCLH to chase my referrals. Turns out the referrals were never received by anyone, so for 2 weeks I’ve been waiting for urgent appointments that were never going to happen! After many many phone-calls, being passed pillar to post, I find out that unless you have money to go private, appointments with the autoimmune specialists are a 4-6 week waiting time. How much hearing will I have left by the time I get an appointment?

Why does the patient have to do all the work to get treatment?! Where is the compassionate CARE element of the system? we’re all about process and procedure, tests and medication, and it seems we’ve forgotten that there is a patient in the middle of it all who needs to be assisted and cared for. I wonder how many people actually benefit from the NHS and how many are just sent round the houses until they give up or naturally get better.

So after all the work getting steroids and trying to get my appointments from the NHS I pretty much gave up exhausted. I decided that the most important thing I could do was to rest, so I’ve been hibernating the past 4 days. Unfortunately my tinnitus has been so unbearable that quite a bit of the time I’ve just been bracing myself in fear that the noise will never stop.

I’m sorry if this has been a really miserable post. I do wonder why anyone would want to read anything so damn miserable but its the reality of my situation right now. I hope I will be able to bring some good news and positive spirits soon.

I’m now at least finally up-to-date on the blog so am now in real time and the posts will get shorter as I wont be trying to catch up!

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