At night I wake up with the sheets soakin’ wet and a freight train running through the middle of my head – I’m on Fire (Bruce ‘the Boss’ Springsteen)

Fourteen months ago I spent almost an entire weekend creating this blog. It was something I’d been thinking about for some considerable time but hadn’t gotten around to it. Well, for whatever reason, that weekend (end August 2020) inspiration struck, I set up and registered the web page and wrote my first blog (above, or link here).

I had big ambitions. To write a weekly blog about some or other topic and link it to a relevant line or verse of a song lyric, to hopefully add a bit of interest.

So much for that. A year and two months have passed by since then and the second blog (i.e., this one) has only now been produced. As I sit writing this it is tempting to think of excuses to use to justify the derailing of my plans – there really has been a lot going on – but the truth is that I dropped the ball big time and basically chickened out.

A major contributor to this derailment is the subject referred to in the heading of this blog. Over the month of September 2020, I started hearing a hissing sound in my left ear, that started getting progressively worse (i.e. louder and more intrusive). It is hard to describe tinnitus to a person who hasn’t experienced it beyond the temporary ringing you sometimes get after hearing loud noises or attending a music concert.

The initial reaction of course is the fear that there is something wrong in the ear or brain area. After a week or more of the incessant noise I made a doctor’s appointment, which (given Covid restrictions) took another few weeks to happen, and they said that apart from some impacted wax in the affected ear, there was nothing else to see. Instead of waiting for another appointment I paid to see a private Audiologist who after removing the wax examined my ears with a high tech mini camera. Again, nothing to be found, no visible issues, so he did a thorough hearing test. There was some hearing loss in both ears (only at the higher frequencies), so nothing major, but slightly more than they’d expect to see in someone my age. This hearing loss is a common cause of tinnitus, and hearing aids may well help so my brain can turn the volume down.

The hearing aids are around £1500 not counting the consultations, so back to the NHS I went. To cut to the chase, the next weeks/months included a specialist ENT, an MRI, several physiotherapy sessions, and NHS hearing aids.

Nothing helped, nada, zip.

So back to the title of this blog. My tinnitus gets worse towards the end of the day, partly owing to fewer distractions as I wind down for bed, but also because (and I am convinced of this) it is related to my neck and jaw muscles, namely the stiffness and tension I seem to always carry there. The worst part is that after falling asleep and being asleep for around 2 hours, my neck muscles stiffen up – from being immobile, the physio tells me – and then I wake with the noise at deafening levels. For a few weeks I would wake up and it would be like a jet engine screaming (no longer just the hiss) in the whole back of my head. It’s impossible to get back to sleep in this state, the body is in fight or flight mode, tension headache across the back of the skull which feels like an ever-tightening band, cold sweat and panic. The panic is the worst, is this going to be it for the rest of my life, how will I stand it and is it worth it?

In these early-ish days I had to get up and leave the room. The adrenaline and fear won’t allow me to lay still, so I do the only thing that can distract and calm me, I pick up a guitar. The electric one, unplugged, so no one else in the house will be disturbed. It takes a varying amount of time, 30 minutes, 90, sometimes more, before my breathing slows, and the panic subsides to a point where I can go and lay back down. Deep breathing and then at some point, exhausted, I fall back asleep. For 2 hours, then rinse and repeat.  This may sound overly dramatic but I cannot describe how it feels when there is an incessant intrusive noise in your ear, that NEVER (not in 14 months anyway) stops. You can feel upbeat and positive and be busy during the day and then it is in the background, but if your mental state drops or ambient noise lowers, it is there. There is no escape.   

I went to physiotherapy, they agreed that my neck and shoulder muscles were very tight and did some acupuncture as well as painful massage. It didn’t really help much, perhaps because I cannot afford to pay £55 a session for regular treatments. I went to some counselling for help in coping (even more expensive than the physio, but the NHS waiting list is in years, not months). I got some strong sleeping pills from the doctor, because after a few weeks of never sleeping longer than 2 hours at a time I was in a bad way. I would take a tablet every third day (they can cause addiction apparently) and sleep for 7-8 hours. Not refreshing and rejuvenating sleep, but it definitely took the edge off.

Right, enough misery now. Things are now much better than they were, and I am hopeful I am making progress on the path to habituation. They tell me that this is where my brain no longer perceives the noise as a threat and then fades into the background. I now take a sleeping pill much less frequently and can go up to two weeks without needing one.

So what has changed to improve the situation?

I am as convinced as ever that my back, neck and jaw muscles are involved and if not the actual cause, they are certainly an extenuating factor. I have discovered that if I wake up in the night and it is very loud, sitting on the edge of the bed and stretching out my scalene muscles and others can turn the volume dial down a few notches.

I have discovered that I have bad posture when sitting at my laptop. This is especially bad when this is my job and I sit like that 8-10 hours a day, every working day. I have started implementing cues to increase my awareness of when I am doing this neck hinge thing I do (sitting hunched forward but with chin lifted so I can focus on the screen (I have varifocals)) so I can sit up straight and bring my chin back. I take breaks more often and stretch out my neck several times per day. I also do yoga in the mornings and some breathing/mindfulness exercises.

I am working at changing my relationship with the tinnitus. Trying to remember that I have so many good things in my life that are worth living for and reducing the importance and impact this condition has. Letting it be and reminding myself that it is just a noise and cannot hurt me and it can do what it wants.

I still take paracetamol fairly regularly because I struggle with tension headaches (something I had rarely experienced before this) that I suspect are a result of the underlying stress of the tinnitus as well as the stiff neck muscles.

So, progress indeed, and, in case it doesn’t sound like it……

I have finally written this blog (#2). What more proof do you need?   

..I’d give all my tomorrows for a single yesterday…?

Nope, not a chance.

Listening to the much covered and much loved song Me and Bobby Mcgee1 in the car this morning, it struck me what a poignant and heartbreakingly beautiful line this is. I guess the author/singer feels that life is no longer worth living without Bobby, to the extent that he’d give away the rest of it just to be able to go back and spend a single day with her.

Social media and in particular Facebook present us with memories from the past on a daily basis. Usually (but not always) these are great memories simply because it’s human to want to post the good stuff as opposed to the unpleasant or downright painful stuff. I’m sure I’m not alone in regularly feeling some sadness that they are gone, and never to be repeated, and while they can induce some yearning for the past I still think they are a good thing.

How many of us regularly go through the hundreds or even thousands of photos we take these days – remember the old 24 or 36 exposure films we used to have, wow – and take the time to look at them? With phone cameras taking digital photos and the incredible cheapness of data storage I suspect we’re at a point where more is indeed less.

So Facebook chooses memories for me, and while they’re not always the ones I would have chosen had I actually looked through the posts myself, they often have me smiling fondly. Yearning too, occasionally, but hey, I’m looking through photos and posts from the past that I otherwise wouldn’t have.

I enjoy these regular glimpses into a mostly happy past, but rather than descend into sadness I am  choosing to believe that there are equally great times still to come. Life moves on, and damn quickly, so I am trying to remember to slow down and savour each of these moments as they happen.

Finally, it’s not often that I sing the praises of our social media giants and in this context they’re hard to fault, but hold on to your hat, there is also a lot that isn’t so great, so watch this space.        

Have a great day.

  1. I’d always assumed that this song was written by Janis Joplin but in looking it up this morning I discovered it was written by Kris Kristofferson and Fred Foster. Janis had a #1 hit (posthumously) with it but other artists like The Grateful Dead (the version I was listening to) Dolly Parton, Johnny Cash, Kenny Rogers and many others have also covered it.