This post is from my old personal blog, now shut down by Posterous.
I like this photo of me a lot. There was never any deep thought behind it when it was taken, I just wanted Chris Floyd to take a picture of my (amazing) nails. As he snapped away and I talked more and more nonsense behind the protective shield of my fingers, Chris suggested drawing a face on to my hands. The result was what you see above.
I think it’s an awesome portrait, hence why you now see it as my avatar in most places you look, but the photo actually has a much deeper meaning to me. Whilst it was effectively born out of larking about, Chris managed to create a picture that symbolises (to me at least) a battle I’ve been quietly fighting with my face for years.
I say ‘quietly’, but this is not the case within the confines of my closest family and friends. In fact for them, they’ve gone through years of me complaining, worrying, despairing and moaning. I am eternally grateful for their support and cannot believe they haven’t chucked me on a bonfire.
I would like to think that most people reading this don’t know the extent of what I’ve been going through, as I don’t want to be known as somebody who excessively whinges. People don’t read my blog or follow me on Twitter to get an update on how much pain I’m in that day, such updates would be boring to anyone, not least of all me.
When I was a teenager I started to have problems with headaches and neck pain. As anyone who has ever had chronic headaches will know, they are notoriously difficult to find a cause for. Headaches can be caused by all sorts of things, from chocolate to brain tumours, so you’re actually pretty lucky if a doctor can ever pinpoint a reason for why you’re afflicted by them.
It wasn’t until around three years ago that an opthamologist suggested my pain was being caused by my jaw. She suspected deeply impacted wisdom teeth, to which I just left her office being grumbly and moany, knowing that most people around that age went through a bit of wisdom tooth related trauma.
As my pain got worse and worse and started affecting my ability to live a ‘normal life’, I had x-rays to confirm whether my wisdom teeth were in fact the problem. My London dentist was shocked by what she saw on the x-ray and referred me to the Homerton Hospital, with the view to them being removed.
This started a long and painful (excuse the pun) relationship with The Homerton. Within my first visit my consultant knew that my wisdom teeth weren’t in fact the problem (they’re so highly embedded in my upper jaw that they’ll never come down, my lower jaw doesn’t have any at all), and suspected I actually had a wider problem with my jaw joint itself. He sent me off to get my skull x-rayed. If you ever get the opportunity to play inside one of these x-ray machines then do it, they have been the highlight of this whole sorry saga.
These x-rays confirmed his suspicion, my temporomandibular joints were badly damaged. They were crumbly and poorly and the source of all my woes. I have to admit that at that point I was elated. I was in a huge amount of pain, but in the shades of the black, grey and white of the image I could see the ‘proof’ of why I was in so much pain. And once you have an identified problem, you can set about finding a solution.
A treatment plan was put together and I had renewed hope that my life would resemble what it had done before, I would be able to get out of bed without pain medication and – hopefully – be able to bring back to life my old favourite party trick of being able to fit my entire fist in my mouth. I’d be able to star on this blog, and all my dreams would come true.
Unfortunately, things got progressively worse. I ended up having to take three months off work and live with my parents like a baby. I often couldn’t eat or talk, I wouldn’t sleep for days at a time being kept awake by the agony of it all. And my only relief came from dangerously high levels of codeine, which left me in a zombie like state. I would be dead on the sofa, wishing I was just that.
The codeine ended up affecting my health dangerously in other ways, it is an opiate after all, and my body would shake and my heart would race. I wasn’t quite Phil Mitchell ‘the crack years’, but it wasn’t much fun. I can make a joke out of it in hindsight, but it was terrifying. I knew I wasn’t going to be able to succeed in business or have children or anything like that, when I couldn’t even get out of bed.
I’m not going to be able to even begin to articulate how much pain conditions of the jaw can cause. But if you’ve ever been repeatedly punched in the face, it’s a bit like that. But every single day. You wouldn’t want to know the internal dialogue I have had with myself standing at the edge of train platforms, but it has been heartbreaking.
It’s not just the jaw that ends up being affected, it affects the ears in a way that leaves you feel like you’re always fighting a fluey infection. You have constant earache and it affects your hearing, and the knock on affects of angry ears are dizzy spells and loss of balance. It’s not much fun clinging to the sofa with the room spinning, not when you haven’t been on the gin anyway.
The referred pain becomes a huge problem too, the musculature of the shoulders, neck and jaw are very complex. My jaw started to severely affect my neck, leaving my nerves compressed and my arms very weak. I couldn’t carry shopping (the horror!) and my fingers were becoming numb. It was very frightening and compounded the fear I already had that I was going to end up a useless lump, unable to fulfil any of the ambitions I understandably had as a determined and smart young woman.
Being in pain is never nice, but at least if you’ve got a bad knee or ankle or shoulder then you can rest it. You can’t ‘rest’ your face, not unless you don’t want to eat or talk. When The Homerton decided it was too dangerous for me to continue taking codeine and effectively blacklisted me from ever taking it again, I was prescribed Seroxat to try and help me ‘cope’ instead. Take it from me that Seroxat is a nasty, nasty drug. I am incensed that I was prescribed it without having any of the risks being mentioned. I came off of that as quickly, and safely, as I could.
When it became clear late last year that there was a very real chance of me throwing myself under a bus, my family very kindly paid for me to go private. We were basically after the opinion of someone who specialised in my condition and who was rated as one of the top people in Europe. Conveniently he worked in the same hospital as my Mother, but I would never have been able to guarantee seeing him there on the NHS, as I’d have always been seen by one of his team as opposed to him himself. So we organised to see him at a private hospital instead, the hope being we’d pay a consultation fee once. We just wanted an expert opinion, then we could go back to the NHS armed with more information.
I left my first consultation with him furious. Not because he wasn’t amazing, but because I realised I had never been treated properly by the Homerton. They had never done any proper investigative work. They had never given me more than 8 minutes of their time at a consultation. They had never offered a solution other than a life-time of pills and the constructive advice of ‘you’ll just have to leave work’.
I had already undergone splint therapy at the Homerton, but it had exacerbated my problem and damaged my joints further. I can’t tell you how much resentment I have for this, they didn’t take the time to understand what was wrong and therefore gave me an entirely inappropriate treatment plan. In fairness to them, they are working under the impossible constraints of a hugely overwhelmed NHS. So it’s not their fault as medical professionals, they do the best they can with the limited resources they have. But I still feel bitterly that they owe me a year of my life at the very least. But there’s not much that can be said or done about that now. My new consultant started me on a different course of splint therapy and taught me all sorts of new exercises. There were things I was banned from doing, and things that became compulsory. For three weeks I wore an alarm that beeped every ten minutes to remind me to relax the muscles of my face. Yeah, that was a fun three weeks for those around me. I also started physio therapy.
My pain came under control, I still took painkillers quite a lot but it was a marked improvement to where I was before. I was no longer crying myself to sleep or researching one way flights to Switzerland, which was nice.
I continued to see my consultant regularly and I was confident that my health was improved enough for me to be able to commit to starting my own business. It was an exciting time to say the least.
Unfortunately, in recent months my pain has returned. My jaw has shifted dramatically and I now have a pretty severe open bite.
These pictures, taken this morning, are of my jaw completely closed. As you can see, I have no contact between my teeth. The gap continues to widen. There are only two teeth in my entire mouth that make contact when my jaw is fully closed, my upper and lower back molar on the left.
This is affecting my speech and my ability to eat. It’s not very nice aesthetically either, but that really is the least of my worries when I have the ever present intense pain to deal with. My muscles are trying to get used this new jaw positioning (which they can’t, because the jaw is misaligned) and they’re not happy at all. Some days my jaw is so tight that I can’t even fit a chocolate button in my mouth, which is understandably an absolute travesty. Chocolate buttons were one of the main reasons I could give myself to get out of bed.
Luckily, I work from home so I don’t have to put on a brave face for anyone. I don’t have to say very much out loud as I do most of my communicating electronically. If I do go to a party or see friends then after a few hours of talking I am exhausted. That doesn’t mean I don’t want to go out, I still love seeing my friends and meeting new people, it just tires me now. Anyone that grew up with me will know what a gossipy chatterbox I was, I remember being told that the only way I would ever be quiet would be if my jaw was wired shut…so maybe I’m finally being punished for years of driving my teachers mad with ‘talking at the back’.
I have been at the dentist most weeks for the last few months, trying to come up with a solution to bring my bite back to normal. I was told I would need extensive orthodontics and was devastated. It sounds vain to be ‘devastated’ about having braces, but come on! I’m a 23 year old single woman and I post pictures of myself every day on WIWT for goodness sake, what would you expect?! It took a long time for me to get used to the idea of having braces, but I knew I had to have them.
My maxfax consultant wrote to me after being informed by my dentist that I would be starting the first phase of orthodontic treatment, he wanted to take a look at my jaw for himself before anything started.
On Friday, I saw him. I was nervous but excited, I don’t know why I was excited. I think I thought that maybe he’d say I wouldn’t need braces, but that I could do some stretches or have a new splint or kiss a toad or something and it would fix itself.
He told me I needed the braces. He also told me he was going to have to brake my jaw, remove bone from my face, fix me back together with plates and screws and then wire my jaw shut.
I didn’t react well to this news, nobody would. I’m in so much pain already that the idea of now going through such nasty surgery just makes me cry uncontrollably every time I think about it.
I am scared that it will hurt, I am scared about what my ‘new face’ will look like and most of all I am scared that even after six months of swelling and a further year of braces that I will still be in pain and it will all be for nothing.
I have to trust my surgeon, but it doesn’t stop the fact that I am terrified.
Of course the real kicker is that this surgery is not covered by the newly reformed NHS. Without wanting to go all postcode lottery on you, I live in a PCT that has no money, and worse than that, I live in the most debt ridden area within the PCT. My doctor, dentist, orthodontist and maxfax consultant will present a case to the powers that be that I should receive NHS funding, but I have been told not to expect to get it. NICE aren’t so nice after all.
The cost? Around £20,000.
I don’t have £20,000. I don’t have any money to be honest. I have already used my savings to ‘live off’ when I’ve been unable to work because of my jaw, and a lot of money has been spent on physio and medical bills already. It’s as though I live in America, but without the better food and cheaper clothes.
As most of you know, I am trying to start a business so I am trying to put the little money I do have into this. I now have to find £20,000 to invest in this surgery, instead of finding £20,000 to invest in my business. It’s not like I need to become a hooker or anything to meet the costs, I’ll find the money. I’m just understandably upset that where I was once excited to be approaching my friends and family for the first round of investment in my business, I am now having to ask them to invest in my new robot face.
I’m not thrilled, as you can imagine. And I am scared about how it will all work out. I feel as though everything I have dreamed about is slipping away from me, just because my skeleton doesn’t happen to fit together nicely.
I am angry that there are people gorging their way to diabetes, drinking themselves to liver disease and smoking their way to cancer and yet I can’t get the treatment for a condition I was born with. That is a wider political matter though, and I won’t ever be discussing it here.
Of course, I am fully aware that things could be a lot worse. I’m not going to die or have a shortened lifespan, not unless I do something really stupid anyway. I am grateful that I don’t have a disfigured face, and whilst I used to be angry that people would respond with ‘but you don’t look ill’, I am of course pleased that I don’t. Other than swelling, my open bite has been the first visual clue anyone would have that anything is wrong. It will be pretty clear post-surgery that something is wrong, but it’s a means to an end.
It’s worth pointing out that, despite all of this, I think I’ve had a pretty successful year. I’ve worked very hard and there’ll be people who are surprised to hear that anything has been amiss at all, which is lovely. I have done some amazing things that I’d have been proud of had I been fighting fit, let alone whilst going through this. I’m still working my arse off and I still know I’ll be very successful one day, I just have to get past this little roadblock first. I have never let anyone down and I never would, and I’m pleased to say that I have some really exciting projects coming up with some amazing people which I can’t wait to get my teeth into, *ahem*.
But anyway, that’s where I am. And that’s the story behind the photo.