Wednesday, 17 November 2010

Progress II

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



Ivy said...

Wow Angel what a blog and what a progress.
You are so brave and I am sure a real help to anybody facing a similar op.
Hope you can eat some baby bites of Christmas Dinner.

I have the feeling I know who the book about Chronic illness is dedicated to.

Kate Hardy said...

Hugs - you've been through a hell of a lot and you're doing SO well. Good on you for keeping positive. Hope your great progress continues apace! (And you're doing much better than you think you are!)

Flowerpot said...

You are doing SO well and being able to write about it as well is incredible. Keep going and congratulate yourself every single day.

muddyboots said...

being of a slightly, no totally squeamish nature l can really feel for you & what you are going through, this is the person who runs a mile from a cut finger, keep up the stick exercises & here's wishing you well for the coming weeks. xx ps: banana split is waiting 4 you!

toady said...

You're doing great girl!! Little steps = big progress.

Chris Stovell said...

Damn - my comment disappeared into cuyberspace when I pressed send.

Chris Stovell said...

Okay, will try again - just so full of admiration for you, for hanging on in there and WRITING! Well done, brave girl. Cx

Fran said...

So good to hear. It's lovely to hear about all the little progress steps.

arosebyanyothername said...

There's only one word for you - inspirational!
I hope you get to eat some Christmas Dinner.

Frances said...

Angel, how beautifully you write. Your words tell so much to those of us who would otherwise know nothing, nothing about what you have been through, and what these skilled, careful doctors are allowing you to gain.

I wish you strenght (of course, I know you have plenty of this) as your recovery continues.

How lovely that your IJ and you have had some very rich hours together.

Please do write again when you wish to.

Lots of love! xo

Queenie said...

No idea how I missed your previous post, just caught up with both, so glad it's going so well.

Jenny Beattie said...

You are incredible. It feels such a privilege to read what you've put up here. I've nothing but admiration for you.

Very good wishes and keep it up.

Debs said...

I was only going to take a peak (as I'm at work!) but couldn't stop reading your post. You really must write that factual book.

Glad you're so positive and that Idle Jack is okay. It's strange how teens react sometimes, but it seems harder for the older ones to deal with things I think.

If there's anything I can do/send you, please let me know. I think you're doing amazingly well and can't believe how far you've come in such a short time.x

Colette McCormick said...

God you have gone through so much - but you have come so far. Keep positive.

her at home said...

I am wincing in pain wiht you but admore your strengh and feel deeply for idlejack, I can remember the terror of seeing my father again after he had a long stretch in hospital it isnt lack of love rahter I htink loving too much to bear to see you in so much pain and "letting you down" by breaking down adn hsowing his fear when he knew he needed to be strong for you.

mollygolver said...

Angel you are inspiring, amazing. Thank you so much for your blog posts - here's to the best Christmas dinner ever!

Fennie said...

Yes, I do hope you get to enjoy your Christmas dinner, too. What is so amazing is the total control and calmness you exude, unflappability, just get on with it. New jaw, bit of sleep loss, morphine, few sticks, stitches out and pass the brandy butter, please. Seamless. Hardly a pause. (I know it's not really like this - but that is just how you make it seem when you writ about it). Can I send you a big big hug and hope that our paths cross sooner or later and that you continue to produce more of this inspirational writing.

Preseli Mags said...

That's incredible progress. Here's to Christmas dinner and carols!

bayou said...

You make me laugh, the description of the eyebrow --- *ggg*
It's so good to read about your progress and everybody can sense your positive spirit in all this. Time, it just needs time. Once without pain, it will be easy again. I hope you have plenty of plans for a very special christmas. A long virtual hug to you, for me you are a hero! Keeping you in my thoughts.

Reasons said...

You total Trooper. I would like to send you something, if you don't mind giving me your address though if you don't want to that's fine of course, I understand.

Milla said...

phew. You're ok! still feeling a bit sick (me, not you, though maybe you, too!) overwhelmed at your strength. You write it so welll, vivid but matter of fact, not sensationalist or "poor me" at all. Fervent good wishes to continued recovery. And well done, you little star!!

snailbeachshepherdess said...

Bloody good show! So proud of you even if you have got 21 sticks stuffed in your gob - sideways I presume??
Cake festering well - being fed alcohol on a regular basis !!!
take care

elizabethm said...

You are just amazing, do you know that? I think about how you are doing often and don't often enough make sure that you know. here's to Christmas dinner! xx