'P' is for ... Progress and Positivity

I haven't blogged about my progress for a while so when ‘P’ came up, I thought it would be the ideal word.

For anyone new to my blog, nearly five months ago I went through major surgery - total jaw joint replacements (both sides) caused by arthritis, one of the manifestations of my Behcets disease.

Did this really happen to me?

Was it really the 13th October that we drove to the hospital - me taking deep breaths, in, out, puhhhh, blowing away, like I was in labour - trying to calm myself, and not panic, and hubby kept reaching for my hand, covering it with his and crunching it tight as he tried to reassure me. 'It won’t be long now. Soon be over.'

Nearly seven hours of surgery later, and I came round in ITU and was sick, sick, sick - not good when you have two new jaws. Hubby was beside me. I couldn’t see him but I could hear his deep, booming voice. ‘It’s all done – it took six and a half hours. You look incredible. Well done, darling.’

On the one hand it feels as if it was yesterday. On the other, when I see the photos, it might have been ten years ago. When I did my last blog about progress, I think it dawned on me then that it was going to be a long, long road. And it has been.

I will always remember that first glimpse of myself in the bathroom mirror after surgery. It wasn’t me. It didn't even look like my eyes. Tiny, tiny eyes filled with pain stared back in horror. Mrs Doubtfire was the first person to spring to mind. My face was an enormous pastry, doughy mixture. My neck, more swollen than when I had mumps.

Feeling as delicate as bone china for weeks after the surgery, there were times when progress stopped, ir it was so painfully slow, it was undeterminable. The pain was brutal. Everything hurt above the neck. Parts of my face wouldn't do what I wanted them to do. I developed a new party piece - I could only lift one eyebrow. The other sat like an overstuffed caterpillar about to fall off a cushion over my eye. My brain played silly buggers with my nerves for months. I couldn't stand noise. For weeks, every small step was progress; a shower, washing my hair, brushing my hair, pulling a top down over my head.

Now I am me. No more Mrs Doubtfire. There has been so much progress, although I still wonder if there will ever be a time when my jaws feel as if they are mine, rather than mechanical.

The most significant progress, is I have no TMJ or jaw pain. I stopped taking morphine months ago, and don't take any pain killers for my jaws.

The scars have healed wonderfully. The two on my neck are still pink, deep and painful - they feel sore and sometimes pull, although it helps when I rub in copious amounts of bio oil. And the ones in my head ache but otherwise, the scars around my hairline and ears are barely visible. I can turn my neck and drive without thinking about it. Sometimes it feels a little sensitive if I wear a scarf as it rubs, but nothing much.

There are tender patches on my head that feel as if been scalped – hair might have been yanked from my head - and it still feels tender, almost bruised on parts of my forehead and eye socket.

I still can’t sleep on right side as it hurts to put my head and ear down. And if I turn on my left, I have to lay with my head angled on the pillow so that my ear sits below the edge or between a gap to cushion it.

Most of the feeling has now returned to my face but all around my hairline, the scars are still numb. The tops of my ears have feeling but the lobes could be pierced without any feeling.

My mouth opening is about 2.5 - 3cm, a huge improvement from the 1cm opening pre-op.

My bite isn’t quite right - it's still tricky to bite spaghetti or salad but that's no big deal in the scheme of things.

I can just about brush the backs of my teeth.

I can eat crusty bread. And sweeties.

When I use my jaws there is always the sound of a quiet rustling, like fabric or newspaper if I tune in to it. They squeak if I eat an apple or anything that makes them work hard. But there is no longer a clunk or click when I talk or yawn.

I can sing, laugh, yawn, and talk. Oh, I can talk! By the end of the day when I'm tired my cheeks ache, as if I've been laughing too much. And I'm not sure whether others can spot it but when I'm tired I also develop a slur or lisp and my words don't come out quite so easily. If I get too excited and want to speak too quickly my brain stops me, like I’ve had a stroke and slows me so I sound like I'm drunk. Or imagine a ventriloquists dummy. Sometimes it feels as if someone has their hand stuffed up my back and is making me speak, forcing the words out, yet all the time, my mouth won't co-ordinate with it and my face feels taut and stiff.

However I look normal. I go to the shops, the bus stop, the school playground, and to people who don't know me, there is nothing untoward except a couple of scars on my neck if you look up close. Strangers would have no idea what I've had done.

I learnt the hard way that with this surgery there would be no day on day improvement. It was no good getting frustrated or trying to push progress. My consultant told me it might take six months to get my jaws working to capacity. It's still only five months. When I see him in a couple of weeks for my check up he'll be delighted with my progress. Looking back at the photos, it's clear how amazing it's been. A lot of that has been my mental attitude but staying positive has not always been easy. TMJ replacement surgery is complex and the recovery is a slow process. Patience is not one of my virtues.

We still don’t know the life expectancy of the jaws and being realistic, it's inevitable I shall have to go through the whole thing another once, twice - maybe three times in my life time. But after eighteen months of the most debilitating, all consuming TMJ pain, I am free of any. And for now, I can't tell you how good that feels.

Until another day
Bye for now
xx