Well I’m back. Not just back home but I’m me again. Mrs Doubtfire has left the room. It's five weeks since my surgery. And again for the benefit of anyone else facing total replacement TMJ surgery (see previous blog,) here’s my progress from when I came home...
The first couple of days out of hospital I’m as delicate as bone china. The pain is brutal. I can’t stand noise. I sleep like a geriatric, nodding off for minutes here, hours there. Unable to concentrate and read a book, I am content to flick through magazines.
Quiet Mousie grins broadly whenever I look at him, thrilled to have me home. Idle Jack has a few days off to ‘help.’ When I first hear this, I'm anxious at the prospect, and of him making his mess everywhere. While I was in hospital he didn’t visit and barely sent a message. First day home and he’s gone off to his girlfriends to stay over. It’s like he doesn’t care. That’s teenagers for you. When I eventually see him he’s sheepish. Furtive eyes. Then I realise. It’s not that he doesn’t care. He was frightened. And now I’m home and he can see me, he’s better.
I’m soon appreciative for his efforts. He makes soup and cups of teas, prepares food and does housework without me asking. We sit and re-watch the Harry Potter films 1-6together in anticipation of the launch of the latest film. By the time he goes back to work, I miss him and his good nature. I’m blessed to have my two boys.
7 days post op
The first time I go out is to have my stitches removed. Walking into my doctor’s surgery I grasp Hubby’s arm and everyone stares as if I’m Frankenstein’s monster. I apologise to the nurse for doing this to her on a Friday afternoon. It takes forty-five minutes to remove them. It could have been worse. But not much.
Stitches out - 10 days post op
I send a message to friends on Facebook and post photos. I think about writing but thinking is as far as it goes. Ideas stay locked in my head. A week later and I’m able to read a chapter of a book. Trouble is, I’ve changed the book about five times.
Progress has stopped. Or it’s so painfully slow, it’s undeterminable. Everything hurts above the neck. Parts of my face won’t do what I want them to do. I have a new party piece - I can lift only one eyebrow. The other sits like an overstuffed caterpillar about to fall off a cushion over my eye. I scrunch my face up and will it to move. My brain’s playing silly buggers with the nerves. My consultant told me there was no point doing physio, it’s futile exercising stretched skin. I need to wait for the swelling to go down. It will take time. All I have is time.
Showering is difficult, especially washing my hair so I bath. I’m unable to manage without the morphine - something to do with brain receptors, endorphins and tolerance levels, and the awful pain I had before surgery. I mustn’t feel a failure. It’s most important to stay on top of the pain. Pain will hinder healing as will lack of sleep. Just get through the days, and nights; the incredibly long nights. It’s hard to sleep propped up high in the Princess and the Pea bed next to hubby but it will reduce the swelling quicker.
Patience has never been one of my virtues. Where's the day on day improvement?
I count the days since surgery. My consultant told me it might take six months to get my jaws working. It's two weeks. I'm being negative. I am my own worst enemy, creating such high expectations. After eighteen months of TMJ pain, I thought I’d feel the difference straight away. I don’t. I need to stop this. Frustration will only set me back.
At last, a breakthrough. I try a different strategy. When people tell me how great I look, I musn't think they are simply being kind. One look at the photographs and I can see the progress for myself. With the stitches out, the scars are fading fast. When I wear my hair down it’s hardly noticeable. I look amazing, considering. Stop the negativity. Concentrate on the P words; PROGRESS. POSITIVITY and pat myself on the back daily with any progress, however small.
I thrive being more positive. I notice my jaws are not clunking when I eat or talk; the sound is more of a quiet rustling, like fabric or newspaper. I can get a toothbrush into my back teeth. More progress. I don’t spend all day watching Escape in the Country on the Home channel. I remove my pillows from the sofa and put them back on my bed. It’s best to keep sleep for night time. I start thinking of Christmas and open my organiser. I can clean my ears out. I prepare dinner and stick it in the slow cooker. And slowly, as I accept my limitations; that it’s normal, and all part of the process, I find it liberating. Before I know it, I don’t need morphine in the mornings. I care about getting Take That tickets for next years tour and spend most of the day, trying to secure them. I walk round to my neighbours, my first time out. I blog, my first blog post op.
Somewhere around the 20 Days post op mark, I turn a corner and venture down to the bus stop to collect Quiet Mousie off the bus. Driving is tricky but it’s good to be behind the wheel. With Hubby back to work I have to push ahead with domestic duties; getting Idle Jack to and from his shifts, putting washing in, hoovering. It’s slow. But I’m doing it. Every day I see progress.
A week later and I’m back to the Consultant for the post op check up. My mouth opening, 2cm is good for four weeks post op. My bite isn’t right - it was something he flagged before the op - but it's the nearest he could get it. It feels worse than it looks. To my mind, I'm Janet Street Porter wearing a pair of false plastic teeth that are about to pop out. And my teeth won't bite together so it’s impossible to eat salad or spaghetti. But it's troublesome, not insurmountable. At some stage I might see an Orthodontist to see if they can correct it without further surgery because it would be much better to avoid that. If any bacterium gets into my replacements, the only action is to remove them, have them sent off back to the USA, cleaned and put back in. By the time he's finished emphasising the perils of infection, I am clear that it's something I must guard against for the rest of my lifetime, including infections from deep back fillings or tooth extractions.
We talk about other concerns; the drooping eye, lazy forehead, numb patches, etc etc. He can see movement so he thinks it will come back; it may take days, weeks, months, maybe a year. It's normal. So are the occasional electric shocks that spasm from my jaw line down my neck. They are muscle spasms and should ease eventually. It's the same with the swelling. He expects that to take another couple of months or so. I'm progressing as he'd hoped, if not better. And he’s delighted I’m off the morphine.
Now the hard work really starts. He gives me a box of wooden tongue depressors. Five or six times every day I need to place a clutch of sticks in my mouth to increase my jaw opening. Do this for the next two months and gradually increase the number of sticks. I start at thirteen. I’ll see him again in another two months. Then six months. Then annually. Forever.
I go back home and ram the sticks in my mouth. Within three days I’m up to eighteen. It’s been slightly slower this week. I’m managing twenty-one but that's good. It's still progress.
So here I am up to date with this, my second blog post op. I'm encouraged when I see the photos of the surgery and what I've had done. I know I'm getting there. Staying positive has not always been easy. TMJ replacement surgery is complex and the recovery is a slow process. I've needed to keep some goals in mind; to have something to aim for, even when I couldn't see how I could possibly achieve them and I look forward to the time when I can sit and write the days away once more; probably in the New Year. I still have my eye on getting the second novel critiqued on the RNA New Writers Scheme. And that non-fiction book about living with chronic illness or pain and staying positive. However as I sit here, writing this, feeling more like my old self, I am simply looking forward to Christmas. A few months ago my Consultant told me that I might, only might, be able to eat a little Christmas dinner, but I wasn't to build my hopes up. Give it time. Be patient. It seems a theme, patience and TMJ problems.
The surgery is behind me and I have no regrets. I am thankful to my wonderful family, the best friends in the world and of course, Mr Bernard Speculand, one of the best surgeons there is for this type of surgery, and the excellent care and attention I had from him and his team.
Bring on the Christmas dinner and carol singing, that’s what I say.
So until another day
Bye for now
Next Letter for Kids: Susan Hughes
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