When God Smiles At You

So, I took the steroids for four days and I completely flipped out, disappointing a lot of people along the way. All for nothing. There was no chance that taking the medication for only a few days would do anything at all to reverse my self-inflicted hearing loss, considering even with the full course the odds of a measurable positive outcome was slim in the extreme. It was a complete failure.

Except when I went to the audiologist to have moulds made for my future hearing aids about two weeks after the steroid drama, a final hearing test was done and to everyone’s amazement it turned out that there had been some improvement. Not in both ears – there was no change at all in my left – but hearing in my right ear was almost exactly back to where it had been back in May! It’s impossible to say if this was down to the steroids or some sort of freak natural reversal, but the tests were clear. Yes, my hearing loss was still severe enough to warrant some serious hearing aids [none of those tiny, invisible, in-the-canal domes for me], but this regain of hearing in my right ear means that a cochlear implant may not become necessary.

I felt as if God was smiling at me!
[My far wiser friends have since reminded me that God is always smiling at me; I’m just not always all that receptive to it].

About a month later – three weeks ago today, actually – I went back to the audiology department to pick up my brand new hearing aids. The audiologist popped them into my ears, did a bit of fancy-schmanzy computer twiddling and, finally, switched them on. I took a deep breath, mentally recited the shehecheyanu and BANG! – just like that I had Spiderman-like hearing. The most emotional part was hearing the sound of my own voice again. I wasn’t born deaf, so I’ve obviously heard it in the past, but it’s been quite a long time since I’ve been able to hear it. For a long time I’ve only really been able to feel the vibrations of my voice when I speak rather than actually hear it, and it was a pretty overwhelming sensation to hear myself again. It was something of a shock to discover that it didn’t sound at all as I remembered it. It sounded tinny and harsh and extremely loud, reminding me of how it sounded when I as a child would hook my father’s microphones up to the stereo and speak into them. Every time the audiologist asked me a question I had a Cheshire grin on my face, because it was so completely rocking that I was able to actually hear him – even when he was turned away from me! – and every time I answered his questions I jumped at the loudness of my own voice. The audiologist did a bit more twiddling and tested my reaction to him opening and closing doors and windows etc, to see that it wouldn’t be painfully loud. As he put it: ‘It will be annoyingly loud, but it shouldn’t be painful’. There are so many sounds that my brain has not picked up for a very long time, and to the brain any new sound is automatically processed as ‘important – needs to be actively listened to’. I have been told that it will take possibly upwards of three months for my brain to retrain and figure out which sounds are important and which sounds are merely ignorable background noise, because it is in essence rebuilding the sound filtration system from scratch.

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– My New Best Friends –
I call them Watson and Mycroft

 

I won’t lie – having the hearing aids is both totally amazing and incredibly difficult. It’s super cool to be able to hear things, but it is also quite disorienting when people walking past my house sound as if they are in my room [not great for someone with PTSD who is already on permanent high alert], and it can be quite tiring when just brushing something off my clothes sounds like a major earthquake.

In the first two weeks I found it quite overwhelming and confusing to hear my own voice, because it was still sounding tinny and foreign to me – as if someone else was speaking my thoughts, and I really missed not feeling the vibrations anymore [I suppose by brain was too busy processing the sound of it, to also allow me to experience the physical sensation of it], but now – three weeks into wearing my hearing aids I’ve got used to what my voice sounds like – it no longer sounds distorted – and I can once again feel it in my throat and chest, which is reassuring.
A lot of sounds are still very loud: refrigerators, traffic, people coming and going, but I suppose that eventually those sounds will fade into the background. When I first stepped out of the hospital I felt as if the world was assaulting me with its sheer loudness, but, in the midst of sirens and buses and people talking on their mobiles I picked out a sound I hadn’t heard in a very long time: the sound of a bird chirping.

I suppose you have to listen out for the really good stuff, in the same way that you have to actively tune in to sense God’s smile..

And the other week, when visiting my sisters, I had ample opportunity to practice this; as annoying as the sound of my sisters’ kids rummaging through boxes of Lego and train tracks was, being able to hear their little voices when they excitedly called out for me made it totally worth it! It was ace!

The journey is of course far from over, I’ll have a re-tune of my hearing aids in a few weeks where the volume will be turned up even louder, but all in all, I am really glad that I finally made the decision to do something about my hearing.

xx

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Out Of Control – Me On Steroids

There I was, having been told that there was a good chance that my hearing loss was due to my own actions. Not an easy thing to deal with. Part of me absolutely felt angry with myself, was blaming myself; I have a natural tendency to be very hard on myself – especially when the consequences of my actions turn out to be severely negative. But, there was also another part that just felt confused, because whilst the second most recent overdose was certainly a serious one, the most recent one was one where I didn’t ingest more than about half a teaspoon of the chemical, and I couldn’t quite understand how it could have had such a drastic effect on my hearing. But, clearly it had.

The ENT specialist had prescribed a high dose of Prednisolone which I was to take for a week in the hope that it may reverse some of the recent hearing loss. The name of the medication did ring a bell at the time, but not loudly enough for me to clock why, so I went down to the hospital pharmacy and picked the medicine up. It wasn’t until I got home that I remembered that this was a medication which a previous GP had refused to prescribe when my asthma was really bad, because she felt it was too much of a risk, putting me on it. There were two reasons for this: firstly, that people with a history of serious mental health issues are particularly prone to react badly to this medicine, and, secondly, that I have in the past had extreme adverse reactions to three other medications [one of which I was reacting to when I took the second most recent overdose], so the doctors are always very cautious about prescribing any non-essential new meds to me.

But, there I was with the medication in my hand, not knowing whether or not it would really be a good idea to take it. Yes, this medication could potentially save me from needing cochlear implants down the line, but, at the same time, if I did have a really bad reaction I could end up putting myself at considerable risk. The ENT specialist wasn’t someone who knew me well [or at all, really], so when he prescribed it, he did it on the same premises he would for anyone else; ‘Worth trying, no harm done if it doesn’t work’, whereas I knew that this medication could spell real trouble for me.

There was a part of me that was genuinely scared of a bad reaction; I knew perfectly well the horrible feeling of being out of control because of a medication. I had been through it three times.. Yet, there was another part that so badly wanted to be able to do something to reverse the damage I had apparently caused.

I spent a week going back and forth, unable to decide what to do, talking it through with lots of people, knowing full well that, ultimately, it was still my decision to make. I did speak to my GP [well, technically, the receptionist spoke to her on my behalf], and she said that it would be ‘perfectly fine’ for me to take the steroids, and – after all – I had had no adverse reactions to the steroid injections I was given when treated for anaphylaxis.

In the end I decided that I would give it a go, because I knew that if I didn’t I would always be wondering ‘What if..? What if..?’.

Still, to be on the safe side, I decided to start the course early Monday morning, so that if I did have a bad reaction I would be seeing P. later that day. [With two of the three medications I had previously reacted badly to, it had happened literally within a few hours of taking the first dose]. I also had a doctor’s appointment on Tuesday, and scheduled a ‘just-in-case’ appointment with K., my synagogue social worker who I have been seeing semi-regularly, for Wednesday afternoon.

Monday came round and I took the first dose, which – as this was a high dose treatment – was a good handful of pills, making me feel as if I was actually overdosing on tablets. By the time I was due to see P. – about six hours later – I already knew something wasn’t right. I could feel things firing in my brain, rapid electric sparks in my head, and it was as if I couldn’t keep track of my own thoughts. It was a truly bizarre experience. – Anyone who has ever been seen by the mental health crisis team knows that one of the questions you will be asked during the assessment is ‘Are you having racing thoughts?’. Being prone to deep depression and suicidal ideation rather than mania I have always answered ‘No’ to that question, not really knowing what ‘racing thoughts’ actually were. I’m telling you, by noon that Monday I knew exactly what they were – and it was freaking me out, big time!

So, I had a crazy rambling session with P. that day, very unlike any other session I have ever had. I also spoke to H., my care coordinator, that same afternoon and she sorted out a referral to the crisis resolution team for Wednesday, as it was clear I was not in a good way and would likely need the extra support, particularly over the weekend.

On Tuesday morning I went to see the doctor – an absolutely lovely F2 who I hadn’t met before. By then I had taken the second dose of Prednisolone – more out of a sort of manic compulsion than anything else – and consequently the reaction was getting worse. I had also used a surgical scalpel and cut myself very badly in two places; enough to warrant stitches. The doctor’s reaction was ‘Come off these meds immediately – this is a really serious and abnormal reaction!’.

I explained to her the reason why I was on the treatment in the first place and why I was finding it hard to ‘just stop taking the meds’, and this young doctor was absolutely brilliant. She sat back and listened to me carefully and then took the time to make five or six phone calls – while I was still in the room – to get hold of an ENT registrar to find out what the implications of stopping the treatment would be for my hearing, so that we’d be able to make an informed decision. The ENT registrar told her that as treatment had been delayed by several months already [Urgent NHS referral, remember?] it was unlikely that my hearing would improve, that the specialist who prescribed the steroids probably felt it was worth a shot – even if it was a shot in the dark – because sometimes people do respond, even with delayed treatment. But, the registrar concluded, in light of the extreme reaction I was having it certainly wasn’t worth staying on the meds, as the odds of success were so small.

I felt really reassured in that moment that I wouldn’t be missing out if I ended treatment prematurely, because the odds of any improvement were so small. It made complete sense to stop taking the meds.

But, then I got home, and I was still hyper and there was so much in me saying that firstly I was already dealing with the adverse effects of this medication [the GP had explained that it would more than likely be a few days, maybe even a week, before the chemicals in my body would stop messing with my brain].. and it was only a few more days to go.. and what’s to say that I couldn’t have an equally abnormal positive reaction to these meds..? After all, my body is clearly highly sensitive to small chemical changes..

So, the next morning I took the third dose, against medical advice. This time it wasn’t manic compulsion that made me do it, but that part of me that just needed to hold on to hope, that simply couldn’t give up, even though everyone around me felt this was a very bad decision, indeed.

I spent time in my session with P. that day, exploring why it was so terribly hard for me to stop taking the tablets, even though the rational part of me knew that the chance of a positive outcome was incredibly slim – and that was really helpful, even with the chaos raging in my head.

I also had a good chat with K. that afternoon. She was characteristically open, direct and honest with me both about her anger and her disappointment that I had carried on taking the medication in spite of what the doctor had told me, and in spite of the fact that I had felt completely reassured at that point that I wasn’t missing out. I told her that I would think very carefully about handing the meds in to P. the next day, but I was also clear that I wasn’t prepared to make any definite promises, because I simply didn’t feel that I could. So much of me felt out of control and I just couldn’t say that I’d be able to do that, come morning.

Oddly, the thing that made me realise just how out of control I really was wasn’t the fact that I had cut myself so badly, but the fact that I found myself at a McDonald’s having a Big Mac.. I’ve been a vegetarian for something like twenty years, and I keep sort-of-kosher, so for me to sit down and eat something like that goes against so much of what I believe in. It is something I simply wouldn’t ever do, if I were in control of my actions..

I did end up giving P. the tablets the following day, but not before having taken a fourth dose that morning, this time – again – in a very compulsive manner. There was no reasoning whatsoever, just acting: I simply couldn’t not take them. This made me realise that I really needed to view the tablets in the same way I did my scalpels and cords [all of which I had handed in to P. two days earlier, feeling too out of control to be safe with them]; while I was still having this strange reaction I just couldn’t manage the tablets responsibly.

It took a good while after that final dose before I felt completely back to my normal in-control self, and I carried on working with the crisis resolution team through the weekend and most of the following week, just to be safe.

I am really glad that I had as much support available to me as I did during this time, because it was incredibly frightening to be so out of control. The experience was very different to other times when I have felt out of control. Whilst what came out in the midst of this whole ordeal – feelings, thoughts etc – were things that were almost certainly already brewing inside, it was – at least the way I look at it – triggered by outside factors. And that’s quite a scary thing.

All the very best,

xx