Wednesday, 7 December 2016

You Can't Get Used to Pain!

A couple of weeks ago I was in a really bad place. To be honest, things aren’t that much better now. During this time I had an interesting conversation about pain and my ability to cope. Since the attack at the age of 18 my anxiety levels have been rather erratic. With the anxiety and stress comes more pain. I suffer from migraines, face, neck, shoulder and arm pain. Both neurologic and muscular. This can sometimes completely wiped me out and leave me unable to communicate. The pain is totally debilitating to the point where I feel sick and I can’t form my sentences properly. With this comes total withdrawal; mentally, physically and spiritually. I shut down; emotionally and physically, while I try to deal with the pain. In this time, I find it hard to communicate, I cannot get comfortable and I cannot lift or move my arms and hands freely. This happens a lot and most of the time I can hide it from co-workers or acquaintances, however, I cannot hide it from my family and friends. Especially those who I live with.

While I try to reassure my loved ones, and tell them that I am ok and that I am just in a lot of pain and need some time, it is hard to live with someone who is like Jekyll and Hyde. One minute I am happy and chatty and looking forward to my day, then within half an hour I can be an angry mute who just wants to be left alone. The only thing that really helps is a massage. This relaxes me mentally and physically and loosens the muscles and in turn the nerves. Unfortunately, I am not a millionaire so an on-call massage therapist is out of the question. So for the most part I try to stretch the spasmed muscles and rely on medication (something I hate). Without the medication I would be unable to have any quality of life. 

From being ill a lot of the time, over time people’s sympathy and empathy diminishes. Unfortunately, for us long term pain suffers the pain doesn’t. During the conversation about my pain and my stress my friend said: “surely you should be used to the pain by now!” When you live with pain every day, day in day out, surely that becomes the norm and you learn to get on with it?” He pointed out, that unlike others who think they are dying after one day of a bad head cold, I somehow must have become used to this pain, even immune to it by now and be able to function the same as any other human being who lives day to day without pain.

I know there will be a few of you raging as you read that. I was a little taken aback myself. Especially beings as he is an intelligent chap. But alas, he obviously does not understand. I am not taking this as an opportunity to bad mouth him or discount his view in anyway. He has never even set foot in a hospital in his life, so he can not even begin to understand or sympathise with a chronic pain patient. He doesn’t understand other people or the struggle they go through. The conversation did make me a little sad. Part of me felt weak, needy and angry at myself because I have to rely on people to help me and the other part felt totally sad and helpless. 

For all those people who live with someone with long term illnesses or pain, just for the record you can never get used to pain. Pain is not a natural state of being. Pain restricts your ability to do things and really impacts on your hormones and your ability to feel happiness. Over time it wears you down and it often means that you are more prone to other illnesses and disease. Not only this, but situations that an average person can cope with just fine, can become a big deal for a chronic pain patient. Being in a constant state of pain is tiring and frustrating. And it can also be very isolating.

I know being back at work and working from an office desk can be quite a challenge and that is one of the reasons why I cannot undertake a full time job. By 11-12 o’clock every day out come the strong pain meds and there with it goes part of my functioning brain. I try and stretch out and take a walk to the toilet. But once the muscles have spasmed and the nerves start to fire off, the only hope I have is to numb the pain a little. The rest of my work day is a bit of a nightmare. Lunch is often unappetising and the pain makes me feel sick. When I am trying to type and use the mouse, the nerve running down my neck, arm and hand starts to fire off. This then leads to the trigeminal nerve firing off and my head and neck muscles becoming so stiff and pressurised that I am sitting at my work station hoping that someone will actually chop my head off.

I also can not drive too far or stand or walk for too long. Christmas shopping is an absolute no-no and I opt to buy my gifts online. Doing my own hair is a challenge so I opt to let it dry naturally or when I can I pay the hairdresser to dry and straighten it. Ironing is another no-no, I cannot even lift the board and the iron to get it set up without triggering pain, so I still rely on my mum to help me. Large boxes, bottles, pans, casserole dishes, bags of washing, laptop bags, shopping bags, pull handle doors and anything else that is heavier than a 500ml bottle of water physically hurts me to lift or move.

Unfortunately, for thousands of people all over the world, pain is a constant and daily battle. One that you cannot often see being fought. People often make jokes about my weakness and limitations but it is a reality for me. I would love to be NORMAL. And even typing this now, my eyes are filling with tears. I feel so flawed as a human being. This article isn’t supposed to be a woe is me moment, it is supposed to help you understand what chronic pain patients go through.

Many patients are worse off than me. The drugs cannot contain their pain and they are suicidal and bedridden. Some people are in so much pain they cannot physically talk, stand or lift a thing. I know I am lucky in that respect and I know I need to learn to love myself and embrace the pain because the pain is part of who I am and it has lead me to the place I am at now. Unfortunately, I resent it, I hate myself for not being able to fix me, to be stronger and to be more stable. It is a constant battle, body and mind and one that I know I need to approach with more compassion.

I'm Sorry!


On a final note, I have received a few nasty messages over the past few months and I want to say for the record I am sorry if you think I have let you down. I am sorry I can not be there for you all and make all your pain go away. I feel guilt every day that I do not respond or blog. There are only so many hours in the day and in between my job, running my own house, going to my appointments, dealing with extreme tiredness and my pain and trying to see my mother and brother, I do not have a lot of time or energy to do much else. Mentally and physically I feel broken. When I usually have a spare hour after sorting everything out at the end of a long day at work, I am in so much pain and so drugged up that I can hardly speak, let alone read, reply and blog. I just want to curl up with my heat pack and sleep. Unlike what some people believe, my battle is still on going, I have not been cured and I suffer, just like you do every day. 

I also lost my God Mother Ann in October after her battle with cancer. And this is another reason why I have been so quiet. Ann was one of the closest and most constant people in my life. She has been there for me since the day of my birth, came with me to the hospital appointments when my mother couldn’t make. She was at christenings, birthdays, Christmas and even supported us all when my baby brother Arran died. My mum and brother were able to be with her son by her side when she passed away. She was an amazingly strong and wise woman and I know that me, my brother and my mum are going to miss her dearly.

Despite everything I have going on, please know, I am sorry and I will try my best to get back to you all. I receive so many messages and some often get missed in the message request file. I set up this blog to help people and to make sure people do not feel alone and I know my lack of response or recent blogs goes against that. I cannot make any promises that things are going to get better, because my health has been bad recently to the point where I thought I was going to lose my job. But I will try my hardest to get around to blogging and replying a little more than I am now.

Thank you as always for the support and I shall speak to you soon.

Love always,

Thursday, 25 August 2016

Happy 5 Years Face!

So it's 5 whole years since my surgery. Yay! This year particularly has been a largely reflective time for me. Lots of changes and endings. Lots of repeating patterns and destructive thought processes. It's been a long old journey. Sometimes I wonder whether it's time to pack this all in. To finally close the book on my orthognathic journey. Although the surgery was a huge success in so many ways, there are still a great many things I struggle with. My journey certainly didn't end after orthognathic surgery.




One of the main findings to come out of this year is the whole sinus infection issue. After suffering terribly with constant reoccurring sinus infections after my first surgery, I had both my upper and lower plates removed. This was in hope that it would ease the pain and muscle spasms on my bottom jaw and ease the sinus congestion and constant infections related to my upper jaw. Unfortunately, although the surgery helped with my breathing and nasal drainage it did not resolve the sinus infections 100%. They were definitely less frequent after surgery, but I still experience nasal congestion daily and sinus infections once - twice every 3 months.

I went to see an ear, nose and throat doctor before having my plates removed and he suggested another surgical procedure. But as you all know I am not willing to go through any more surgery, so I refused. In January this year a 6 year leak was discovered at my mother’s house. A lazy plumber had not installed the pipework correctly and the waste water pipe from the boiler was unconnected to the waste pipe. As a result, over the 6 years water and waste dish water had been seeping into the floor and under the foundations of the house. The leak was fixed, but the moisture, mould and damaged floor was not. The housing association finally got around to sending a surveyor, who proposed a list of works; repointing, walls stripped and replastered, floor brought up and dried out and mould treated. They then discovered asbestos tiles throughout the downstairs living area and promptly stopped all work. It was then when they all disappeared. We couldn’t get hold of anyone. The housing officer, the surveyor, the workmen, the maintenance department, no one.

The air is thick with mould. My eyes constantly itch and burn and my nose feels like I’ve just jumped into a swimming pool. My brother has had flu like symptoms for months and my mother’s asthma is terrible. The house we had worked so hard to make nice was now ruined. The mould started making its way upstairs to my brother’s room, the airing cupboard and the bathroom. We moved all of his clothes into my room. We continued to call, write and email the housing association, but nothing. I took it upon myself to message the MP who was fabulous again and wrote to the housing directors immediately. Another 2 weeks went by and nothing. I email the directors myself, the tweet the CEO @Steve_Howlett, write to the MP again and the Ombudsman. More people have arrived to survey the house and disappeared again. I really don’t know what to do. The mould report says it all.




So anyway, after that long story, we now believe that after years of suffering, pain, high temperatures, shivering and having to take constant antibiotics that this leak may be the cause of my sinus issues. Something that could have been completely avoided if someone had done their job properly. Look what negligence can do. To make matters worse Peabody are in no hurry to rectify the problem and in fact lied and told the MP, the ombudsman and environmental health that the problem has been fixed. Oh to be a millionaire and leave the UK!

This year, like all the others since my operation has been a step forward. I now have a steady stream of money and clients and I am becoming more confident in myself and my abilities. I have had the opportunity to work for myself and explore different areas of work I had never thought of. For example, I have fallen in love with online marketing. If it wasn’t for the operation I would be working in H&S or HR for some corporation somewhere. 

On the flip side I have also had to wrestle hard with myself. I get negativity thrown at me all the time and I take it very personally. I hate myself and constantly pick holes in anything I have done. Be it a lost word during a telephone conversation, a spelling mistake on an email or forgetting to do something. I know no one is perfect, but with my medication and pain, I really have to concentrate extra hard on everything I do. So when it doesn’t go 100% right, I beat myself up for it. Why put in all this effort to mess it up anyway? 

I’ve also had to come to terms with the fact that I am 28 and miles behind others my age and so far away from where I thought I’d be. I take comfort in that fact that this time two years ago, I didn’t think I would ever be able to work again. Constant pain and fatigue made it impossible for me to even go to the shops or see my friends. I still have pain every day and I get awful face and head migraines but these are less frequent now. 2-3 times a week, on a good week. I can sit at an office chair for 7 hours now and not have to go home to sedate myself with powerful pain relief. I still take the pain relief but a lot less. 2-4 co-codomol 30/500mg, ibuprofen 400mg x 3 and 20mg amitriptyline daily. I have sumitriptan nasal sprays and diazepam for really bad days. It would be nice to think that by this time next year I will be able to write and tell you that the medication has all gone and I am pain free at last. Let’s keep our fingers crossed for that one!

My assessment for King’s College body dysmorphia clinic has finally arrived. I have that booked for the 5th September. My mum can’t come with me, so my brother has agreed to. I shall let you all know how I get on. Hopefully, this will be the missing piece in the psychological part of my recovery. I have waited for this appointment for almost 2 years now. In that time, I have only seen my psychiatrist and psychologist at King’s 6x. I know I need to work on this side of me. I know this inner bully needs to be quietened down and I need to be less scared of the world. I need to learn to love myself and to believe the good comments and ignore the bad. I am always waiting for someone to validate my self-hatred. When they do, that is it, nothing else matters. All the negative feelings of hate and fear come rushing back. Stef you are a freak, you are ugly, you have put on weight, you are unlovable, everyone you love leaves, you won’t ever have what you want. Look at that chin, that fat, you are stupid, you are pathetic and weak, you have to rely on other people, just give it up, it will make the world a better place. I suppose some of these are normal, in moderation, but this is all consuming for me. These are my 10 commandments. These are the demons I face every time I leave the front door, answer the phone, speak to someone. It is always there looking over my shoulder waiting for someone or something to back it up. And for the most part people have no problem making that happen for me. 



Have that for a deviated chin! Sure many will hate seeing this picture!


Be it a spiteful comment at work, your partner lying to you, your friend letting you down or just some silly troll online. There is enough hate in the world and I refuse to join these people or to stop helping people who need it. 



Well this went a bit dark. So finally, for now, I shall finish by writing a little bit about plate removal surgery. I have had a lot of people message me recently about removing their plates. It is completely common practice in places like Switzerland to have your plates removed after a year. The only reason it is not common practice in the UK is because it costs money. Personally, I am all for removing the plates after a year. It is much more natural and stops future issues with bone growth over the plate sites. Furthermore, you may find that like me, your jaw movement and breathing gets a lot better once the plates are removed. Many people have a horrible time with orthognathic surgery and this puts them off suggesting plate removal surgery. However, plate removal surgery is a lot easier and a lot less painful. Even people who have had their plates removed 12 years after surgery can tell you this. 

Plate removal surgery is day surgery and all work will be done inside your mouth. You will be sore after surgery and maybe a little numb from the stretching, but nothing like the original surgery. My surgeon said I could go back to a normal diet after a couple of days but I stayed on soft food for 1 month after the plate removal to allow the bones to properly heal and for me to build my facial muscle strength. A lot of people do not have the same pain and or problems with muscles tearing as I do, so this step would be totally irrelevant for you. You can go back to work and resume normal activity as soon as you can. 

  • Pain of orthognathic surgery 10
  • Pain of plate removal surgery 6

Average pain levels for me

  • Pain level on a good day 3
  • Pain level on a bad day 6


This time last year, I dyed my hair red to celebrate my transformation and achievement and this year I make a vow to myself. To be honest and to work on myself. To stop cutting everyone out and to really try to love me and everything I have achieved. As always I send my love and strength and hope that this blog continues for many years to come. 

Lot’s of love

Steffie

xx


Visit my new blog site www.jawandface.co.uk for exclusive never before seen images and content. 






Thursday, 28 April 2016

I'm Tired!


I’m tired of people who don’t understand. I’m tired of pain. I’m tired of seeing people I love struggle. I’m just tired. Mentally, physically, emotionally and spiritually.

The day after I found out my godmother has cancer, I felt compelled to blog. My godmother has been there from the day I was born. She lived 2 doors down from us and has been a trusted family friend and guardian for many years. She has had a hard life. Her daughter hasn't been well, she lost her son at a young age, then her
amazing husband (our godfather) and most recently and without warning her lifelong best friend. I supposed after all of that hurt, her body has finally had enough.

Times like this really put things into perspective. You start reflecting on your own life and your own decisions. You start to come to your senses and remember that really, right now, in this moment, is all we have. This can be quite scary. There is no real past or future, just now. I worry about the mortality and the health of people around me. Not in a selfish way, but because I want the best for them and I don't want them to suffer.

Currently my mum and brother are living in a house that has 6 years of waste water under the floors. The kitchen fitters forgot to connect the waste water pipe in the kitchen and as a result all of the water from the sink and washing machine has been gushing under the floors and the foundations for the past 6 years. Mould is starting to form everywhere and to make matters worse the floor under our laminate is asbestos. My mum, brother and I have been so ill. Skin and eye irritation, breathing difficulties, flu like symptoms and nasal congestion. The housing association are dragging their heels. They think that they can come in; lift the lower floors and strip the walls while we live there. It's killing my mum and brother as it is, without releasing it into the air. Mould is toxic and can cause cancer and asbestos can kill you. Mum is so tired from work and family dramas that she just doesn't have the time or the fight left in her. She is the tenant so only she can deal with it all.

Just when we thought everything was going ok, it all falls apart again. It's disappointing to say the least. I just want her and Fraser to be happy and healthy. I don't want her to struggle, no more than I want my godmother or anyone I love. Life and people can be so unkind.

Work has been hectic and I’ve really neglected my loved ones. I worry and have such high levels of anxiety on a daily basis that this mood of fear is all that I am.  I'm a worrier. That's what I do and have always done. My threat system is on constant high alert and the inner bully in me cannot wait to attack and beat me down. I’ve managed to back myself into such a position that I feel like I am trapped and can’t breathe. The hours fly by and I couldn’t tell you what day of the week it is. I'm a total zombie with very few feelings other than fear, worry, exhaustion, anger or in-difference.

A lot has changed over the past few months and it’s all starting to take its toll on me. Having multiple issues and daily medication makes full time work really difficult. I feel like a lot of the medication (especially sumitryptan) dumbs me down and makes it hard for me to concentrate.

I know my pain levels are often made worse by stress levels but sometimes it's just from over doing it. I'm weak. To the point where I struggle to lift a 500g tub of butter. It physically hurts to lift a 500ml bottle. Doing so puts pressure on my arms, back and neck and in turn causes my jaw and face to hurt.

Don't get me wrong, it is a lot better than a few years back when I couldn't stand for more than 2 mins and my mother had to physically lift my head off of the pillow or the back of the chair. I have a lot more freedom of movement. But it still isn't anywhere what I would class as "normal".

I've also picked up a terrible habit of biting my bottom inside lip when I'm feeling stressed or anxious. Which is practically all the time at the moment. As I can't feel it due to numbness, I bite away until it bleeds. Some weird form of self torture, I suppose. But all this pushing and pulling also puts pressure on my joints.

I'm still getting the optical pain caused by the pressure around the neck muscles but this has eased off somewhat since the spring equinox. For those who are interested; the NHS have been doing trials for some time looking to find relationships between cluster migraines and the moon cycles. Having suffered from migraine and nerve pain for over 5 years I can definitely see a difference in the pressure of my head and face before and after the Autumn and Spring Equinox. This could be due to the warmer brighter weather or there might be some truth in the theory of the moon cycles affecting our pain. They control the tides and we are made up of approx 65% water, so why isn't it possible that the moon can affect us?

 


On another note I tried Bowen for the first time last week. Bowen is a relatively new therapy created by the Australians in the 1950's. Unlike deep tissue massage this treatment uses light movements and is mainly concerned with dealing with the fascia. Fascia is the band or sheet of connective tissue and primarily collagen, beneath the skin that attaches, stabilises, encloses, and separates muscles and other internal organs. It links to the whole nervous system.

Each session typically involves gentle rolling motions along the muscles, tendons, and fascia. The therapist then pauses between each physical intervention to allow the body to reset and adapt to the treatment. The appointment takes around 1 hour.

During my session I could feel a slight sting around the area that had been manipulated and then I had quite a few involuntary muscle twitches around my body. This was not unpleasant and the whole experience was actually quite relaxing. After my appointment I was advised to rest and continue with medication and normal exercise (which is non-existent). I was advised not to take really hot or cold showers or baths and to drink plenty of water. I have been to one appointment so far so I am yet to see if it helps my pain levels. I shall update you in due time.

In summery I just want to say, although you may be tired and in pain and feel like no one truly understands, you are loved and valued and by just reading and gaining knowledge you can help so many people. All of the treatments, drugs and struggles, they all help to inform and treat other people. Many of times I've been on the edge of breaking down and giving up and one nice word from a kind heart is all it takes to snap me out of it.

We don't know how long we are going to be here and it's ok to be a little bit selfish. You have to help yourself and take time for you. You are imperfectly perfect and I hope that when you read this you understand that you mean something to me. By reading, sharing, learning or commenting on my content, you are allowing for me to grow and for others to connect with you. I can't always answer all of the questions but you have taken the time to reply and share your knowledge and experiences with my readers. It's so brave and I admire you all.

Until next time my jaw-geous lot.

With love always,

Steffie



Tuesday, 26 January 2016

Who am I after Jaw Surgery?

It’s always great when things go right but I have always expected the worse. I suppose this pessimistic view comes from years of experiencing constant failures and let downs. I do not want this to be a woe me moment or even a poor Steffie moment. I want this to be an authentic view of the world through my eyes. The eyes of someone who doctors would say has depression, anxiety, agoraphobia and body dysmorphia.

As many of you know I have undergone quite a transformation over the past 6 years. A rollercoaster of emotions, fears and loss. Loss of people close to me, loss of my job, my career, my house, my friendships, my family, my old face and my identity. I speak to a lot of people online, girls and boys, old and young and we all have the same fear going into this operation. What if after all of this I don’t like my new face? What happens if the reflection in the mirror isn’t what we hoped to see?

The sad truth of the matter is, there are lots of people who go through with this surgery with the explicit intent of making their face look better. Yes, that would be a great bonus to finally be aesthetically pleasing to people for once in your life but I really feel that this should not be the primary focus when having the operation. I say this from experience. You will never be 100% happy with your reflection because you are looking for the negatives. While I post up selfies in a vain attempt to make the world like and accept me, I see clear as day the bump in my nose, the way it slightly bends to one side, I see the asymmetry of my jaw line and how long and masculine my chin looks. And no I don't need some helpful person to point that out to me thank you! I dream to look like the tanned perfectly petite models with long eyelashes and flawless figures but I know I am far from that.



Why do we all want to aspire to the norm? Surely the thing that makes our species so amazing is how unique we are? The different skin colours, the hair types, eye colours, the shape of our bodies, our height and even our jawlines. Wouldn’t it be great if we could all just accept ourselves for who we are? There is so much more to beauty than a pretty face but society makes us forget that. Instead we all just get in line and try to clone ourselves.  To make matters worse we are a cruel bunch and there are many people out there who would line up to tell you exactly what is wrong with you. In the age of social media we have nowhere to hide. Even if you don’t post pictures yourself, you can bet at some party or event somewhere your picture would have been taken and it will be online somewhere. Why is it so important for us to fit it? To be normal and not to embrace our oddities. Our wonky nose, our one bent tooth, our weak jawline? Maybe after we fix all the flaws we are still unhappy and miserable? I always consider Michael Jackson and the self-hatred he must have had for himself to what to change his face completely? Why do we torture ourselves?

Most of us have been told from a very young age that there is something wrong with our face or our bite and we need to get it fixed when we are older. As we grow up and develop we become more conscious of our differences and all other manner of insecurities start to surface. As a young impressionable teenager we have magazines, Instagram profiles and television thrown at us. Shoving down our necks how we should live, what we should wear, how we should behave and what we should look like. Anyone who doesn’t fall into line and at least aspire to meet perfection is a weirdo or a misfit. A total social outcast rebelling against the natural order of things. Living in modern society is difficult and if you are already damaged/deformed you are not going to make matters worse by trying to be an individual or trying to draw attention to yourself. We want to fade into the background or slowly drift along the stream with all the other ducks and not be singled out or ridiculed. I spent a lot of my teenage years doing this and trying to fit in that I never really had the opportunity to find out who I really was. I never gave myself the opportunity to express my opinion or explore what I liked.

I visiting the hospital not long ago. I am in pain every day of my life and struggle to function on the pain and nerve medications. I get frustrated because my brain is slower and I cannot communicate as well as I once could. I cannot maintain concentration or retain large amounts of information like I once did. I struggle to grip things and I cannot lift, sit, stand or walk for any period of time without feeling a huge amount of pain. I get tired easily and my neck and face cease up. It gets worse in the winter. As soon as the temperature drops a couple of degrees my muscles spasm up and I am left in huge amounts of pain. I try to control it with heat packs and layers of clothes but I struggle when it comes to showering and drying off.

I constantly blame myself for my imperfections and illness and sabotage my happiness because I don’t particularly like myself. I often question if it is all worth it and what contribution a deformed and defective woman could add to the world. I have night terrors and I suffer from panic attacks. I rarely go out alone and if I do, I am on such high alert that I use my quota of adrenalin and am completely exhausted. People who do not have these fears or anxieties will never understand what that feeling is, but I know many of my spoonies will comprehend. It’s not even the pain that gets me down the most, it is the inability to do things for myself. To be a normal functioning human being. I have contemplated suicide on a few occasions but the only thing that holds me back is that I don’t want to be selfish and hurt my mum. Otherwise I would have given up a long time ago.

Anyway I have gone way off track. At the hospital appointment my psychologist and I were talking about my core beliefs and why I feel the way I do and she asked me; “so who is Stefanie? And what does this person like? What brings her happiness and enjoyment?”. Dead silence came over the room and it was then that I realised, I can’t love or like a person I don’t even know. Who the hell am i? and what do I like?

I have spent my life being a people pleaser and doing things that I thought would make people happy. I went to university because I thought that would make my dad love me. I thought that I would get a little more respect at my workplace. I started working in HR and Auditing because I wanted to have enough money to look after my mum and brother and to make my dad proud. I worked 3 jobs as well as full time university because I wanted to look after my family and please my boyfriend at the time. I used to go out for meals and shopping with my friend because she was unwell and had nothing else to do. Even though I was in pain and had very little money. I also went to the pubs and clubs because I wanted to make her happy even though I completely hated going to a place where drunk people could point out my face and make rude comments.  So when in amongst all that people pleasing was I happy? And when did I have time to grow and develop as an individual?

A lot of people have told me to be more selfish but I still find this hard because of the guilt I feel when I say no. This isn’t because it is something I should be doing, but it is because I don’t value myself enough to believe that I deserve anything good.

4 years on from surgery and I was given my final chance to get the genioplasty from the NHS. I never wanted my operation to be about my looks so I said no. But thinking back to it now, it is probably another way for me to keep bullying myself and believing I don’t deserve to be free of this issue. I am wise enough to know that a million operations will not fix the issues I have with my face or my looks. And I am also wise enough to know that I need to start looking after myself and discovering who I really am, away from family, colleagues or friends. So how do I plan to find myself and my identity?


Silly as I sounds I started a Pinterest board in secret and I started looking online for things I liked. I went and got some holiday brochures and newspapers and I started to put together some ideas about things I like. I moved away from the blog for a while and made some adjustments in my life. I made a choice to be more loving to myself and to treat myself right. I started to paint my nails and wear a little bit of make up to make myself feel better. I looked for a new massage therapist and I started reading again. I really got out of my comfort zone and taught myself how to create a WordPress website. I set up as a self-employed freelance PA and met some new people. I wrote letters to the people who had hurt me and I burned them in a bucket in the back garden. I forgave people who had wronged me and I removed negative people and users from my life. Then I distanced myself from everyone in my family apart from mum and Fraser.  My brain really did not want to do any of this. The fear and self-sabotage made me feel tense and uncomfortable every single day. But I tried to push through it. There were tears and days where I couldn’t pick myself up or function and there were days where I felt like I was really making progress.




Things will never be 100% on the health or pain front but I hope that in time I will gather more confidence in myself and rid myself of the anxiety I feel every day.  I suppose what I am trying to say is “be you” and be who you want to be. Don’t feel like you have to fade into the background or please anyone else. You are living your life and everyone is unique, special and beautiful in their own way. Don’t feel disheartened or like your imperfect because good people don’t see that. They see your beauty both inside and out. Don’t be afraid to be yourself and move towards loving yourself, flaws and all. You will be much happier for it. The answer is never going to appear at the end of a surgeon’s knife. The answer is YOU!

Lots of love

Monday, 18 January 2016

How to Reduce Swelling after Jaw Surgery

What is Swelling?


Swelling is an increase in the size or a change in the shape of an area of the body. It is caused by the accumulation of fluid in the tissues of the body. With the combination of broken bones and damaged capillaries, it is inevitable that you will experience some swelling after surgery. However, one of the most shocking issues people talk about after surgery is the level of swelling. While some patients become a little puffy cheeked, other patients swell up like bowling balls.

The first few days after surgery the sight of your face in the mirror can be quite distressing. You may even look at yourself and think “what did they do to me”? It is not uncommon to have swelling in the whole of your face and neck area. The swelling should peak by day 3 and then start to slowly decrease as you recover. You may find the swelling and pain is worse in the morning, but should improve throughout the day as you become more mobile and sit upright.

Sometimes you will wake up after surgery with a pressure bandage on your face. The bandage will feel very tight and uncomfortable. However, you will normally only be expected to wear the bandage for the first 24 hours after surgery. It has been found that the pressure bandage is very effective in preventing excessive swelling and bruising.

It would be expected that the worst of the swelling should disappear within 2 weeks. However, it can take up to 6-8 months before your tissue fluid levels return to a stable condition. In my case I had issues with the titanium plates so my swelling lasted a lot longer than most patients. Finally, it is not uncommon to experience “puffy days” after undertaking jaw surgery. Some patients, even 5 years after jaw surgery, still experience the odd “puffy day”. Just take a look at Kanye West's face from time to time. It does not last and you should have nothing to worry about.

It is vital to remain calm and not make the swelling any worse. It is essential that you do not stress your face or cry as this will cause the swelling to worsen in and around your cheek pockets.



So what can you do to reduce swelling?


There are many different techniques that you can adopt which will help to decrease your swelling. Coupled with my own experience and research, here is a comprehensive list of techniques that you can use to reduce your swelling post-surgery.

Elevation


To aid in swelling reduction you should try to sleep in a more upright position. I would recommend using 2 or more pillows. Having your head raised in relation to the rest of your body will help to drain away fluids and reduce swelling.


Light Exercise


After surgery your surgeon with advise that you do not participate in any contact sport for around 8-12 weeks. You will be able to resume non-contact sports and exercise as soon as you are ready. In mine and many other jaw surgery patients’ experiences, the first few weeks after surgery are uncomfortable and exhausting. With the pain, swelling, lack of sleep and the dramatic change in diet I was unable to do very much. It is important that you do not stay in bed too much whilst you are recovering. Many patients find that going for a short walk everyday can greatly reduce their swelling.

Plenty of Rest


It may sound so simple, but rest is one of the best ways to reduce swelling and promote healing. When the body is in a period of rest it can focus its concentration on functions that are neglected while you are awake. Sleep is a dormant period where the cells are doing a lot of repairing and your body moves from a stress response into a particle wave response. Although you may find your swelling is worse after a period of inactivity it is essential to rest in the first few weeks following surgery.

Medications


Non-steroidal anti-inflammatory drugs (NSAIDs) are another widely popular way to combat pain and swelling. Anti-inflammatories such as ibuprofen, diclofenac and aspirin are often given to patients after undergoing surgery. There are over 20 types of medical NSAIDs. It is important that your surgeon or health care provider is happy for you to take any medications and it is important that these medications do not interfere with any other medications you may be taking. In addition to this, if you suffer from asthma or any cardiovascular issues you may not be allowed to use any type of non-steroidal anti-inflammatory. It is always best to speak to your doctor or pharmacist before taking any form of medication, be it prescription or over the counter remedies.


Arnica 

Arnica is a homeopathic medicine. There are several species, such as Arnica Montana and A. chamissoni, which contain helenalin, a sesquiterpene lactone that is a major ingredient in anti-inflammatory preparations. It has been claimed that arnica treatment can reduce swelling dramatically, prevent muscular tenderness and ease postoperative trauma. Arnica can be purchased in many forms; gel, cream, spray, bath ointment and it can be ingested in pill form.

Although, I did not use arnica after my operation, I wish I had tried this. After my mum broke her ankle my friend bought her ionised arnica gel. Mum used the gel every day after a bath and it great reduced her swelling and bruising. She also felt that it helped to ease the pain. Please be aware that after your operation your face will be very painful and fragile so make sure that you do not rub the gel or cream in too vigorously. Also ensure that you do not get any of the gel or cream on any open external wounds.

Acupuncture 


Acupuncture has been around for many years and originates from ancient china. Most recently acupuncture has become more popular with western societies and is now available in many health care establishments as a form of pain relief and physiotherapy. It is believed that acupuncture has many benefits for patients. It is stated that it can aid in the reduction of pain, swelling and stress and also provides relief from insomnia and psychological issues; such as anxiety and phobias. The needles are very thin but long and are placed in ‘acupuncture points’ around the body. The session usually lasts for 30-45 minutes.



Read more about acupuncture in my Patient’s Guide to Acupuncture eBooklet.

Cold


Another effective way of combating swelling is by using a cold compress on the area several times a day. You can use a variety of forms, including a standard ice pack, a plastic bag full of ice or a bag of frozen peas. The cold will help to alleviate pain, inflammation, heat and redness around the swollen area.



When I returned to the ward after my operation I was given ice packs in pillow cases that the nurses wrapped around my head so the packs touched my cheeks lightly without putting too much pressure on them. I continued to use ice packs for the first 4 weeks after surgery. I used ice packs 4 times a day and kept them on for duration of 15 minutes at a time. Once my surgeon was happy for me to use heat, I started to alternate ice and heat packs to promote healing. This was both beneficial and soothing for me.

It is important that you use a covering, such as a pillow case, when using ice packs. Do not apply ice directly to your skin as it can cause ice burns and blistering.

Hot 


Hot compresses also work well in relieving facial swelling and can help to stimulate blood flow to your face, which in turn lessens the swelling and irritation. You can use a conventional heat pack that you warm in hot water or a wheat bag which you pop into the microwave. You may also like to use a heat blanket or a heated pad for a period of 15 minutes.



Please ask your surgeon before applying any heat to your face as he/she may advise against it in the early weeks following surgery. In my case, my surgeon said to use only cold compresses for the first 4 weeks after surgery.

Staying warm (in general) will also aid in recovery, as this allows oxygenated blood to flow freely throughout your body. This can help to decrease pressure in your face and relieve swelling. It can also act as an effective muscle relaxant.

Drink Plenty of Water


Another way to reduce swelling is to ensure that you drink plenty of water. Not only will this help to keep your mouth clean it will also help to keep you hydrated. By drinking more, your body will respond by getting rid of more water as well as other waste products, which can minimize swelling. Being fully hydrated, your body can remove salt which also contributes to swelling. It is recommended that you aim to drink at least 8 glasses of water a day.






Reduce Salt 


Sodium is an element that is found in many foods, as well as water. The body requires a small amount of sodium in the diet to control blood pressure and blood volume. Too much sodium may result in shortness of breath, high blood pressure and increased swelling. Reducing your salt intake can be very helpful in reducing the build-up of excess fluid in your face post-surgery. You may also want to reduce your intake of caffeinated drinks as these contain a high level of sodium.

Vitamins


Before and after surgery you may want to take a high potency multivitamin or increase the amount of nutrients in your diet (refer to the vitamin chart for ideas). If you are planning on taking supplements please ensure that they have an adequate level of vitamin B complex, magnesium, vitamin C, flavonoids, zinc and amino acid complex. Vitamin B complex and magnesium are beneficial for anxiety levels and also aids in healing. Vitamin C and Flavonoids are great for immune support and work as a great antioxidant. Furthermore, they also promote healing and have anti-inflammatory properties. Finally, zinc and amino acid complex are vital for bone and tissue formation.


Omega 3 Fish Oils


Although it is widely recommended supplement, its benefits have not yet been proven. The recommended daily amount is also unspecified. However, there is a vast amount of modern research that suggests Omega 3 oils may be beneficial in the reduction of swelling. In my case, I found that Omega Fish Oil supplements were also useful to improve the condition of my skin, hair and nails after surgery.

Spices 


If you can handle the heat, one of the alternative ways to help decrease swelling is spice. One spice frequently publicised for its anti-inflammatory properties is capsaicin, which is a naturally occurring ingredient found in chilli peppers. Other good sources include basil, bay leaves, cumin, coriander, dill, fennel, garlic, oregano, pepper, sage, and thyme.

Bromelain 


Bromelain is an enzyme found in pineapple juice. Pineapple has a long history of tradition and is used among the native people of Central and South America. Bromelain can be effective in the reduction of swelling, especially around the nose and sinus area. Numerous studies have shown that Bromelain speeds up the body's ability to heal. These studies have shown a significant difference in the speed of recovery in patients who had Bromelain before and after surgery and those patients who did not. From my own experience, I drink pineapple juice everyday as I find that it reduces the pain and pressure in my face. In general, since my surgeries, I have tried to make a more conscious effort to eat more pineapple and soft fruits. Warning: Bromelain in large amounts can increase the risk of bleeding, especially if you take blood thinners such as; clopidogrel (Plavix), warfarin (Coumadin), and aspirin.

Green Tea


If you are trying to relieve the pain and swelling in your face you might want to try drinking a lot of green tea. From my personal experience I find green tea is one of the best ways to relieve swelling and pain. Green tea has a lot of vitamins, minerals and antioxidants in it, which are great at getting rid of all types of swelling and irritation. Green tea contains salicylic acids, which is one of the main ingredients in aspirin.

When I am having a puffy day I aim to drink at least 3 cups of green tea. You may also like to drink a cup of green tea before you go to bed because it will help calm down the muscles, tissues and nerves in your face. If you do not enjoy the taste of green tea you may like to add in a teaspoon of honey. Not only does it add sweetness to the tea, it doubles up as a valuable antioxidant. Green tea can be found in most grocery stores. My favourite is Clippers Organic Green Tea.

So that is that. As always feel free to message me and join me on social media. I'm not on often but I'll reply when I can. Also check out my FAQ's blog here: http://goo.gl/UnHxfi 

Sending my love. 

Always,

Steffie




Visit my website to download special patient packs, leaflets and e-books. 

www.jawandface.co.uk 

..and join me on social media

Facebook: www.facebook.com/steffiesstuff

Twitter: www.twitter.com/jawandface

Instagram: www.instagram.com/jawandface

And if you have a spare moment please can you vote for me in this year's blog awards?
Click on the picture or follow this link: www.ukblogawards.co.uk/a-guide-to-surviving
Thank you so much!



Tuesday, 1 December 2015

4 Years Post Orthognathic Surgery

I can hardly believe it has been 4 years since my first ever surgery and 3 years since I started this blog. It has been an emotional and crazy journey and as many of you know, the journey continues.

So it has become a custom to update you all at least once a year and have a general check in on things. I would like to apologise if I have been a bit slow in responding I have had a lot of work on. Alongside that I have also had to compete with the usual family dramas and ill health.

So an update of my health:


Numbness: Yes. All around my chin, teeth and lower lip on both sides. I doubt that I'll ever regain feeling here. But to be honest I count this as a blessing. I'd rather be numb than to have any more pain or nerve issues. I spoke to a lady a few years back who had the same surgery as me and instead of the numbness, she experiences excruciating pain every time she uses her lips. So this has meant talking, eating, drinking and even kissing her husband and children has become a total nightmare.

Pain: I would rate an average of 6 out of 10. This fluctuates and decreases with my stress levels and hormones. I experience a range of different symptoms. I have muscle weakness and pain in my face and neck. I also experience nerve pain in my trigeminal nerves and down my neck and arms. This means that I find it hard to grip or carry things. In addition to this, I also experience face and head migraine attacks. These have been kept under control with hormones and Sumatriptan nasal sprays.

Infections: Unfortunately, yes! I am still experiencing reoccurring sinus infections. I take regular courses of Doxycycline and have recently started trying ear candling. In the hope of clearing my sinuses a little more.

Mental health: Relatively stable and content. I can cope with the daily pain and have learned to accept it. However, when I do have bad pain days or I do get an infection I find my mood can become very low. Then the feelings of being worthless and a freak kick in. I also become really agoraphobic and hide myself away at home not wanting to speak to anyone. I try to distract myself from dwelling as much as possible.

I still see my psychologist and psychiatrist and they have been really good throughout the whole process. I also try to read as much as I can. This helps me to escape. If I can't read a good film, a bath or a 30-minute meditation or classical music session soon make me feel relaxed.

Current medications for pain: Co-Codomol 30/500mg, ibruprofen 400mg, Amitryptline 20mg, Loestrinen 20 and Sumatriptan 5ml nasal sprays. I have some Diazepam in the cupboard for bad episodes. But I have not been bad enough to use it yet.


Herbal remedies used: green tea, aloe vera, acai berry, raspberry ketone, vitamin D and fish oils omega 3, 6, 9. For the inflammation I drink pineapple juice and use ice packs. When my pain is bad I'll often use a microwave wheat pack. If I can afford it a steam room at a spa really does a great job of easing my pain. It also helps to clear my sinuses and it is actually the only place I've felt completely pain free and relaxed. Such a shame I can't have one at home haha. I also still go for massages. I switch the treatments up every now and then. I've tried hot stone massage, Swedish massage, deep tissue massage, reflexology, crianial therapy and ear candles. I find every single one of these eases my pain a little. It never goes 100% but it does help to bring it down to a more comfortable level.







And on to everyone’s favourite part of the blog...

This year has been one hell of a crazy year. My best friend from primary school got married, I got a brand new car, went on holiday and I've finally found love. Yes, that is correct! After years of being single I finally found someone who tolerates me :). We met on the 1st March 2015 and have been together since. Originally we were supposed to meet for a quick coffee. But that turned into a 8 hour coffee and meal. On the 14th March Alex officially asked me to be his girlfriend. I've literally never felt the way I feel about Alex. Not only is he an amazing boyfriend, but he is also my best friend. For the first time in my life I don't have to be afraid to be myself. I can be my authentic self. He never judges me and accepts my limitations as if they aren't a big deal. He often makes jokes about how I coped before I met him (while carrying my extremely light bags and opening bottles of water for me). Don't get me wrong, it's not been plain sailing, but I know that I have finally found someone who has chosen to share himself with me and accepts me for who I am. Whatever one of us is lacking the other makes up for. So we make quite a formidable team.





In amongst all of our work and commitments we even managed to visit Rome and Tuscany in the summer. It was absolutely amazing!








I also had the UK Blog Awards in April. My brother and I went along all suited and booted. Thanks to your votes I was announced as a finalist at the end of last year. Unfortunately, I didn’t win but I was really grateful to be in final. It was a great night and a fabulous experience. I wasn’t expecting to win because this area is so niche, but when my name wasn’t called I did feel a little disappointed. Thinking about it now, I am unsure if I would have made it to the stage in my floor length dress and heels (not mention the 5 glasses of champagne I’d had) if I had won.






On the eve of my 4 year anniversary I started to write this blog. But I have been so busy that it has taken until now to finally get it finished. As some of you would have seen, I took the bold move and dyed my hair red. Well auburn. I wanted a change and I wanted to make a statement. I really like it and am planning to keep it up for a while. My confidence is nowhere near what it should be, but i am starting to feel a lot happier about myself and the way I look. Alex tells me I am beautiful everyday but I still find it hard to believe anyone could find me attractive. I suppose a lot of other people feel like this too.




Oh and we have finally starting to get mum's house in order and after a year of having no garden we are finally BBQ ready. Although, now it is winter and we won't see any sun here in the UK for another 6 months. But still, exciting news!

All in all, this year hasn't been bad at all. I still hope one day I'll be pain free but I'm unsure whether this will ever happen. I'm in a much better place mentally and physically, so my pain level is much more manageable now. I find it quite difficult to blog now that I am moving on from the experience. But I always have time for people who email me. This is such a unique and totally terrifying experience for anyone to go through. Even living with chronic pain brings its own unanswered questions and worries. I would like to thank everyone who has been there for me through my journey. Especially my mum, my brother, my friends (Theresa, Jackie, Aash & family, Peter, Jeremy, Ali and Mehmood) and my hospital consultants and medical professional. Without every single one of you I wouldn't be where I am now. And for that I am truly thankful.

So on that note... Another year gone, another successful follow up appointment at Guy's and my pain management programme continues.

As always feel free to message me and join me on social media. I'm not on often but I'll reply when I can. Also check out my FAQ's blog here: http://goo.gl/UnHxfi

Sending my love. 

Always,

Steffie

Visit my website to download special patient packs, leaflets and e-books.

www.jawandface.co.uk

..and join me on social media

Facebook: www.facebook.com/steffiesstuff

Twitter: www.twitter.com/jawandface

Instagram: www.instagram.com/jawandface

And if you have a spare moment please can you vote for me in this year's blog awards?
Click on the picture or follow this link: www.ukblogawards.co.uk/a-guide-to-surviving
Thank you so much!