'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

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

xx

This is it. Bye for now

Hurricane Debbie. That’s what they should call me today. I’ve just sat down to take a breather between hoovering, dusting, cleaning bathrooms.

I’ll never get it all done before I go in hospital tomorrow. Why do us women nest like this? I’m the same at Christmas, before I go on holiday, if I go on a writing course, and now before I go in for my surgery.

There are a million things to do but I am compelled to make sure the house is clean, the washing is up to date, the boys all have shirts, school uniform, Chef whites lined up for the next few days.

I know they’ll be fine. It’s not as if they’re babies. They’re all quite self sufficient (they’ve had to be with my health.) And my hubby is a gem at times like these. Even with his mountain of work, he’ll cope wonderfully as he always does.

'You don’t need to do all this, we can do it,’ he chastises me.

I know they can. But making sure everything is in order is my way of having a little control. It makes me feel better; gives me peace of mind, knowing that while I’m away, they will all be okay. And lets be honest, being busy distracts me.

The pre-op on Thursday made it all feel real. Pulling up on the car park of the Priory, Birmingham my stomach collapsed inwardly, my legs turned to Bambi and my heart banged against my chest, attempting to escape.

I can’t escape. It has to be done. I know it will all go well. I have the best surgeon in the country for this complex surgery.

Because of my health complications the Anaesthetist wanted to see me at the pre-op to check a few things. He’ll come to see me tomorrow too beforehand. It helps that he is completely gorgeous. His bright green eyes are intense but kind, his presence is reassuring. He anticipates my surgery lasting at least seven hours and I have to be catheterised (which I've never had before) but the good news is I won't be on a ventilator - they need me to be alert, to keep my airwaves clear and get me mobile as soon as possible afterwards. Being on a ventilator was one of my fears so that’s good.

So, the plan is, I go into hospital tomorrow (Wednesday) at 1pm and in view of the length of surgery, should go down first (about 3.30pm) to theatre. All being well, I should be finished by about 10-11 pm and straight into intensive care. It depends how I get on the first day whether I'll stay in intensive care another night or go to my own room. Do you want to place your bets now as to how long you think I’ll be in there? You bet. I’m hoping to be home for Sunday or Monday.

Don’t worry. I'm a good patient so I won’t rush things. I’ve had enough operations to know it’s best to do as I'm told. And at least at the other side of all of this, I will be able to be proactive at helping myself recover. For the last year and a half I’ve been helpless and at times, terribly depressed, overwhelmed by pain and the misery of my whole predicament.

At last, this is what I’ve been waiting for.

I have never been more frightened about any operation than this. I wish Woozle was still with us. I miss her. But I know she’s with me in spirit and wishing me a speedy recover. I will get that cup of tea and huge slice of cake at De Grays very soon.

One day. One precious day. One drop of time.

I’ll see you when I see you.

Until then

Bye for now

xx

Season of mists and mellow thoughtfulness

Seven days home and already my tan is washing away in the inclement weather. Loads of washing almost complete, the ironing beckons. Quiet Mousie has settled back into school. Idle Jack once again looks handsome in his chef whites.

I sit at the island in the kitchen and look out. Outside, the world looks an oppressive grey and the hills sit in suspended animation on the horizon with rain-filled clouds sagging over them, waiting to burst. Autumn has applied its brush strokes to the surrounding countryside. Leaves have turned to browns and ochre as green chlorophyll is leached from the trees. Hedgerows bulge with brambles and hawthorns. Elderberry and apple trees bow under the weight of fruit. The swallows have gone but finches, buntings and sparrows flock across the country lanes. Fields lay bare; the harvest gathered and already turned over by ploughs leaves pheasants and partridges exposed. Next door’s straw is stacked against our fencing for winter use. In our courtyard, freshly delivered logs sit neatly stacked, ready for the first fire of the season.

Antigua is a distant dream and as my list of things to do grow in my Filofax, I begin the countdown to surgery.


13th October has a large red circle around the date. And I’ll confess to being ever so slightly in a panic. About everything; the domestic arrangements and whether I’ll get it all done in time, the children, the animals, the housework (I haven’t nested like this since I was last pregnant.) Most of all it’s the thought of six hours of surgery and waking up in intensive care, and the long recovery. This is the biggest thing I’ve had over my thirty years with Behcets disease.

It’s hard. I’m frightened. My chest has taken on the feel of a cage. A bird flutters constantly within it. My insomnia has returned. However with the electric blanket now on the bed, my duvet cocoons me and getting up in the night doesn’t have quite the same appeal in autumn and winter. So I stay huddled beneath, staring up at the vaulted ceiling, watching the oversized illuminated digital clock project itself up onto the bedroom ceiling, the rhythmic flashing on and off, on and off, as the second’s ticks away and morning draws closer.

On Monday 5th October my replacement jaw joints will wing their way across the Atlantic and wait for me in a lab in Birmingham. 7th October is pre-op day. I’ve treated myself to new slippers, pyjamas and a ‘cardigown,’ an ideal jacket rather than full length dressing gown, made of soft fleece fabric. Nan would have called it a bed jacket. I had a facial last week; a vain attempt to prepare my skin in addition to the copious amounts of bio oil I slap on my face. My hair has been a dilemma. I contemplated having it all cut off so it wouldn’t be so noticeable when they shave each side, but then figured that it’s probably best to leave it long - that was idea of growing it in the first place – it would be better to help cover the swelling. And after surgery, I can always have lots of layers cut into it to disguise the scars.

I miss writing. In between the fuzz of chaos, I think about writing and my projects. For now, I must be content simply with thinking about them. Usually at this time of year I would be picking elderberry’s to make wine, plucking rosehips to dry in the airing cupboard ready for Christmas garlands and pot pourri, thumbing through the charity catalogues for my Christmas cards.

There’s no time for any of it. I need to prioritise. And remain positive.



In two weeks time it will be over. By Christmas, my consultant tells me I might be able to have a little food. Hopefully, soon I will be able to eat a banana, hug and kiss people again, talk and yawn without it feeling as if my jaws are dislocating, turn over on my side in bed, brush my teeth properly and visit the dentist. In a year’s time, life should be much improved. After the eighteen months I’ve had, it will be good to have my life back.

So until another day

Bye for now
x

There's no such word as Can't

What’s your mantra?

There’s no such word as can’t

This is mine because I believe that when you really, really want something you must never say the ‘C’ word. You can do anything if you set your mind to it.

My Nan drummed it into me at an early age. Whether it was schoolwork or music, dance or athletics, whenever I said ‘I Can’t,’ Nan would look me straight in the face, her expression serious and retort with gusto, ‘Of course you can. There’s no such word as can’t. Keep trying.’

Sometimes, I puzzled and fretted over her words. There were lots of things I couldn’t do. I couldn’t get A+ in Maths, however hard I tried. I couldn’t get my soufflés to rise like Margaret Owen in Domestic Science classes. I couldn’t run the 100 metre hurdles in under fourteen seconds.

Years, and countless times later of Nan batting those words at me, I found I’d developed huge resilience, a staying power, a dogged determination that nearly matched her strong will. My never say never attitude served me well in my career, personal life, health – especially those times when ill-health threatened to ruin everything. And with the successes came confidence, and a belief that if I tried my very best and kept going, then maybe I could. Nan was right. There really was no such word as Can't.

Now on the second anniversary of her death, whilst I recognise it’s a mantra I’ve maintained most of my life, I have to confess; over the last year or so there have been times when I’ve been lost as I floated in limbo, endlessly waiting for the surgery that’s going to miraculously improve my physical and mental well-being.

Last week, I had to give myself a swift talking to. I’d done so well over recent weeks and had come out from under the duvet where I’d been hiding.I’d stopped swimming because it hurt my jaws to push my chin forward. Or that was my excuse. I couldn’t be bothered. I preferred to sit home and wallow in pain and gloom at my predicament. But a few weeks ago I realised I missed it. Swimming helps the rest of my bones not seize up. It stops me feeling like a lump of lard. And whether it hurts or not, swimming isn’t going to make my jaw problems any worse.

I’m now back swimming four or five times a week. Already, my body tone has improved which makes me feel better about myself and I know I’m preparing myself, physically and mentally, for what’s to come. Exercise has helped the endorphin levels - perhaps it’s psychosomatic, but I feel as if I’m coping with the pain better - I’ve certainly stopped going to bed in the afternoons to shut down from it.

But swimming alone isn't going to help me. I need something to stop me going backwards, sliding towards the open jaws of the black dog of depression.

Come on, Deb. There’s no such word as Can’t. I have to fight back.

It’s easy to say. But the most difficult thing with my periods of ill-health (and other adversities,) is finding the strength to believe in myself again.

As I sat there, feeling sorry for myself, frustrated at the lack of control, I summoned all the positive thinking and strength I could muster for the a final assault. Knowing myself as well as I do, I need a plan or plans. I need goals; something to work to, something to look forward to, something to help distract me and not dwell. Most of all, I need to believe.

Fed up of waiting, we booked a holiday for the 15th September. I may as well be in pain in Antigua as sitting home, looking at the four walls and waiting. We all need the holiday and it will be good for the boys for us to have some proper time together, and if we don’t get away now, it might be months. We’ve had to cancel two holidays because of my health this year.

Next, I chased the hospital and the manufacturers of my replacement joints in the USA tmjconcepts - I sent a nice, but strongly worded e-mail. I can't go on like this. I need an idea of when the surgery is. I have to make certain domestic arrangements. With a husband who works in London most of the week and two boys to organise, it’s not unreasonable to at least have an idea of when the surgery might be, is it - especially if, as I’m told, I might be out of action for several weeks.

On the writing front I would like to announce that I am OFFICIALLY a writer, not because I’ve been accepted for publication, but because I’ve had my first rejection for Living in the Past from a publisher. Well, that makes me a proper writer, doesn’t it? So I've also made a few writing goals which I need these to keep focussed because there were times this year when I gave up - it didn't last, of course - after a few days, I felt anxious, restless and unfulfilled. Writing is the milk in my tea; the fondant on my cup cake, the ice- cream on my jelly.

I intend to finish Country Strife, my second novel and get it on the RNA New Writer’s Scheme for 2011. I’m going to finish the two stories I have in mind for women’s magazines (and submit them.) Finally, I’m going to push on with my idea for non-fiction book about living with pain/long term illness – nothing gloomy or self indulgent - something light with some positive messages. I think it might also be cathartic.

There we are. I have a plan. I feel strong. I have my mojo back. It's just as well.

Last night I had an e-mail from my Consultant.
"How does the 13th October sound for your surgery date?"

Nothing comes to he who waits.

“You can do it. Believe. There’s no such word as Can’t.”

I miss you Nan. But you’d be proud of me.


Until another day
xx

I'm still here. Kind of.

I am in limbo. I’ve been like it for months; floundering, poised up on the top of the hill in my barn, I sit at the island and look out in a state of suspended animation. I am still waiting for the bilateral TMJ replacement surgery. Sorry, I’m conditioned to the medical terminology after a year of injections, investigations and unsuccessful surgery. What I mean is both jaws are to be completely replaced.

“Too much talking,” my husband jests. Not any more. My precious talking. Lordy, how I miss it. And eating, sleeping and yawning. I hardly go out. I’ve tried, but I only suffer afterwards, and I’m not the best company at the moment. I hate to moan but I do anyway. It’s so unlike me. Twenty-three years with Behcets disease, and I’ve never given in before. Having chronic pain can be wearing at the best of times but being in constant pain in my head, jaws and ears is all-consuming. Imagine the worst toothache, earache, abscess, neuralgia pain you have ever had. That’s what it’s like day in, day out. So I hermit; I sit, and wait for the replacements to be custom made. Imagine, in a few months time, I will be walking around with jaws that were made in the U.S.A.

A few of you have missed me and for that I am grateful. I miss me. Some days a catch a glimpse of my old self – she comes out and gives me a swift kick up the derriere and tells me, “Stop feeling sorry for yourself,” “Don’t let the ‘black dog’ get you,” “Think of all the people worse off than you.” I tell you who I do miss – Woozle. She would tell me what to do.

Since I finished the (third) re-write of Tango Man I have crashed creatively. The second novel has stalled. I have a trio of novels in my head which, if I gave them half a chance, could become a Saga trilogy but I don’t have it in me to get them down on paper. I have a couple of unfinished short stories that I intended for the women’s magazine market. Oh yes, and I keep thinking about writing a non-fiction book about 'Coping with Chronic Illness and Pain.' However, all I do is think about it, then I change my mind because I don’t think I’d set a very good example for someone who fights long term illness and pain and copes when I don’t some days.

For those who are interested, 'Tango Man' is now being critiqued under the Romantic Novelists Association New Writers Scheme. And hey, I’ve written a blog. Think of all the positives. It’s only taken me five months. Surely, I won’t have long to wait for some news from my Consultant. We’re hoping August for the surgery. It doesn’t seem that far away now. Maybe this is the beginning of the great fight back. I’m known for them, but then again...

Until another day

Bye for now
x