First of all let me wish each and every one of you a very Happy New Year! I hope you all had an awesome Christmas. Sorry it has taken me a few days to get my head together enough to write this blog.
It’s been a long old year in some ways but in other ways it has absolutely flown by. I have had some wonderful moments and some pretty bad ones but I would definitely say 2013 has been a year of learning and personal growth. It has opened my eyes to a lot of new ways of thinking and coping with the challenges that have come up in my daily life. I’ve also learnt to be more accepting of the “now” and I have been trying not to worry about the past or the future as much. At the age of 25, I never could have imagined this is how my life would be. Constant pain, restrictions and major confidence and esteem issues. But here I am and to be honest it could be a lot worse :). So let’s have a quick review of my year.
January – March
January – March revolved around me conducting research on behalf on the NHS and deciding to create my own website. I really wanted to expand the work I was doing with the blog and help a wider audience. Anybody who knows me knows how much I struggle with technology. But I did it and I’m proud of myself. Here’s the link if you are interested.
I also started to look into alternative pain therapies such as reflexology, massage and aromatherapy. I decided to purchase a couple of day courses to see if that was an area that I would like to work in. Unfortunately, due to my ongoing health issues it was too physically demanding. Maybe it would be something I can get back to, once I’m back on my feet.
In January time I also started a course of psychological treatment called cognitive behavioural therapy. As a starting point, I discussed all my issues with my psychologist dating back to my early childhood. It soon became clear that my esteem issues started at a young age and stem from when I was first told I would need surgery at the age of 11. As I grew, so did my deformity, more people noticed and this was never addressed, until this year. During the sessions we worked on behavioural techniques, such as; thought records and the best friend techniques. This involved me learning to be less hard on myself and trying to silence the self-critic. I am still undergoing treatment but so far it has been useful in helping me to get out more and socialise with friends. I was also able to go to the shops and to the doctors on my own for the first time in years. I also visited the spot in which I was attacked 8 years ago. This was obviously very scary but good for me and I now have a positive reference point of the area.
In the first part of the year I also started Physiotherapy again. I was pretty desperate to find something to help with the pain in my face, neck and shoulders. I really don’t like taking pills. They make me so tired and cause all sorts of side effects. For me, I prefer to try more natural therapies. Every time I have physio it just seems to cause more pain and muscle spasms. The physiotherapist was really confused by my case, so just suggested 5 second stretches and lots of heat packs. Then I was sent on my way for another 3-6 months. Not very helpful at all!
This year I was also encouraged by my physiotherapist to try acupuncture again. However, just like the times before this proved to be unsuccessful. The muscles contracted around the needle areas and this caused me more pain than I had initially been in before the treatment.
Around March time I visited my surgeon. I was a little concerned with my bite as my muscles had been playing up terribly. My face muscles often pulled on my lower jaw and caused me to bite the inside of my mouth. I was also concerned because I had read online about jaw relapse after plate removal. A lady I spoke with online had the exact same symptoms as me and after years of hospital visits her surgeon told her she would need to go through the whole procedure again. She was understandably upset and felt that if her team had listened to her concerns in the beginning, she would not be in this position now.
From speaking with other jaw surgery patients the symptoms of jaw relapse include:
- Changes to the bite
- Teeth movement
- Sensitive teeth
- Spasmed muscle around the jaw and TMJ
- Spasmed muscle around the back of your ears
- Constant pain and pulling of one or both jaws
- Relapse is more common in people who have had their titanium plates and screws removed
My surgeon reassured me that my bite was stable and said that if I was concerned I could always book an appointment with him in a few months. He referred me back to the pain management department to see Dr Poate to see if there was anything more we could do about my widespread pain. At this appointment my surgeon also mentioned that I could have another operation to straighten my chin (genioplasty). I have a very asymmetrical face so this would improve my physical appearance. However, it would not do anything for my pain or muscular issues. In fact it may make my pain and numbness worse. It could also compromise my lip and chin muscles. Personally, I am against having surgery for cosmetic reason, so I declined this offer.
April – July
After a very unsuccessful course of physiotherapy and acupuncture I decided to take it upon myself to research alternative therapies. One of the therapies that appealed to me was hot stone massage and sports massage. Heat packs and mum rubbing my neck normally give me a little bit of relief so I thought this may help. When I asked my physiotherapist he advised against massage and stated they he did not think it would help. Even after the first appointment I could feel my pain levels had decreased. I was taking less pills for two days following the treatment. Although I was in pain, it was a nice pain. Like the pain you feel the day after a workout at the gym, not the excruciating muscle spasm pain that renders me unable to move. Ever since that day, I have paid to see Christine weekly for 30 minutes for a shoulder, back and neck massage. When Christine was on holiday and when I received a free spa voucher I saw other masseuses but they are nowhere near as good as Christine. She really works on the muscles and you can feel the tension being released as she presses and rubs on them. She has many clients who have health issues so she is very knowledgeable about a lot of conditions. To anybody who is having problems with muscle tension/spasms or is highly stress, I would definitely recommend trying massage as part of your pain relief treatment.
After a few months of seeing Christine and seeing some reduction in my pain levels, she suggested that I might want to see an Osteopath. She has problems with her hips and lower back and Christine found that seeing an osteopath helped to relieve some of her pain. I booked an appointment at a local osteopath. I saw John Roberts who was a lovely man. I spoke about my symptoms and briefly outlined my medical history. It was a rather strange experience. I was pulled about and put into weird positions while he pressed on trigger points around my face and neck. At one point he was actually cuddling me and I was trying not to laugh.
He was baffled about my pain but still tried to reassure me by saying he believed it would ease off in time. As part of the treatment he also suggested using laser therapy. But I was not too keen on trying this. By the end of the session I think we both knew that osteopathic treatment was not going to work for me and that it would be best to carry on with the sports and hot stone massages. After leaving the centre my pain went through the roof and was unbearable by the evening. I could not eat properly and my pain medication was not working. This high level of pain lasted for around 5 days before wearing off. This obviously put me off trying this type of treatment again. I was due to see John again in 2 weeks’ time but I cancelled the appointment. Although this treatment did not work for me, I would never discourage anybody from trying it. What works for one person, does not necessarily work for another. There have been numerous studies to support osteopathy as a form of treatment.
On a positive note, me and my family went on holiday to Rhodes in Greece at the end of July. This was our first family holiday in 14 years and my brothers first time going on a plane. My dad had received some money from a life insurance policy that had matured and my parents had decided it would be a nice idea to send me, mum and Fraser on holiday as a surprise for my brother’s 18th. My brother had been going on for years that he wanted to go on holiday, so he was really excited. We had a lovely time and the hotel was wonderful. We stayed in a little family run hotel at the edge of Rhodes town. The people were very friendly and the island was beautiful. I would definitely like to go back one day. Unfortunately, on the last day mum fell and broke her ankle. It was a very stressful time for all of us, especially when Thompson were not sure if they could let mum fly home with us. We managed to get home and thankfully mum did not need any operations. She is now on her way to recovery and is managing to get around with little support now.
August to October
August was mainly taken up with hospital trips for my mum and my brother. Fraser had nearly finished his orthodontic treatment and just needed a few tweaks before his braces could be removed. He was really happy that he would be brace free before his 18th birthday.
Mum was in plaster on and off with suspected blood clots and then a&e plastering her in the wrong position. By early October she had her final cast removed and she was fitted with a moon boot and sent for physio. Very fetching! As she was out of action, I had to resume the role of head of house. I was doing all of the cooking, cleaning and shopping. I was suffering quite a lot with pain and would get very frustrated with myself. I wanted to be superwoman and kept beating myself up because I should be able to do all of these things being a 25 year old. The more stressed I became the worse my pain was. I also felt extremely guilty that mum had to go back to work in her state because otherwise we would not be able to pay the bills or have food. I felt like I should be out there making money and being in full time employment. The reality of it though was that I struggle to sit on a computer for more than 2 hours at a time and if I go to the shop I am exhausted and need to have a sit down. The prospect of work is out of the question. I do miss work and I feel a lot of my confidence issues come from the fact I lost everything in 2012. I broke up with my partner of 5 years, I had to quit a job I loved and I lost people from my life who I thought I could trust. It was a lot to adjust to and now it seemed I needed to make a whole new identity and life for myself.
My two year anniversary on the 26th August was pretty uneventful. Mum had been in her plaster cast for 4 weeks now; my cousin had visited from Cornwall and had stayed with us until the Sunday. The anniversary fell on bank holiday Monday so it came and went without much notice. Nothing had really changed since December last year when I had my plates and screws removed. I was still in pain and suffering from severe muscle weakness and tiredness and the sinus infections that I thought would be resolved were still haunting me. Every time I get a sniffle or a cold it seems to escalate into a full blown infection. According to doctors this is to be expected and it is something that I will have to learn to deal with.
In the midst of all of the emotion of the year, I decided to take a little break from blogging. Although, I love blogging and I love connecting with all of you, it does take a lot out of my mentally and physically. Constantly reliving my surgery and issues can be therapeutic, but at the same time it can be really upsetting. I sat down one afternoon and decided to write down all the skills I have and all the things I am good at (besides the mentoring and blogging). Out of this, I realised I have over 8 years of experience in PA, Administration and Human Resources under my belt and maybe this could be something I could utilise. I find this area of work easy and enjoyable. It allows me to help people and pull together all of my knowledge in the field of admin, law and HR. So on the 9th September I launched SG Virtual Office. SG Virtual Office is a remote based office offering a wide variety of business services. Everything from; logo designs and website building, to diary management and recruitment services. You can check it out on the link below:
November – December
On the 18th November I finally got to see Dr Poate the Pain Management Consultant at King’s. The 2x before I had to cancel the appointments because I could not find anybody to come with me. I do not travel alone or take public transport. Mum was still on crutches so she was unable to come with me. Luckily my god mother volunteered and I finally made the appointment. I was in the treatment room for over an hour and we reviewed my case again. I have seen Dr Poate on and off for the past 4 years with my face pain issues. The last time he only suggested muscle relaxants (which I was allergic to) and tricyclic antidepressants (used for pain). These just seemed to make everything worse before my original orthognathic surgery. My GP had recently placed me back on to amitriptyline after I had been experiencing increased pain and terrible headaches. I am still taking co-codomol 30/500mg 8x a day and ibruprofen 400mg 3x a day. I have also been prescribed sertraline antidepressants because of my low mood, which was causing me to have suicidal thoughts. With the combination of pills I feel a little better pain wise but I am still very tired. Dr Poate sat there and discussed my options but was reluctant to alter any of my medication. He asked me what I thought of a diagnosis of fibromyalgia, to which I responded I am not quite sure. He stated that he thought this was it for me now and that it did not look like I would make a full recovery as we had all hoped. We both agreed that it was not something a young woman wants to hear but to move forward it would be something I would have to accept. He suggested seeing a psychiatrist to be assessed for a final diagnosis and that with the psychological help I could learn to live with the chronic pain and fatigue. He stated that a lot of people’s pain is made worse by stress and depression and that if I worked on these aspects, I may find that my pain levels would lessen. I totally agreed with this point of view and was very willing to give it a try. He sent me on my way and said that I should receive an appointment just before the New Year.
6th December was my 1 year anniversary for plate removal. I do get a lot of people messaging me in a little bit of a panic asking why my plates were removed. My plates were removed because my top plates and screws were stuck in my nasal cavity and were causing reoccurring sinus infections. My bottom plates and screws were causing me pain. The muscle would often spasm around the plate site and the screws would poke through the skin and cause red patches. On top of these issues, my face would sting badly in the cold and my breathing was very restricted.
My surgeon was not too worried about removing the metal work as it had been in over a year. I know some surgeons are reluctant to remove all the metal work because it is expensive and can be tricky if the titanium has fused to the bone. Although there are risks (like all surgeries), I felt like this was the best option for me.
On the 5th December my brother turned 18. It is crazy how time just seems to fly by. I still remember the day he was born like it was yesterday. As the weather was poor we were very restricted in what we could do to celebrate. Me and mum had talked about hiring a scary open top bus tour for him and his mates to go around London. When I passed this idea on to my friends they said “Stef, you are going to put your brother on a bus for his 18th Birthday?” I thought it was a brilliant idea because all of his friends are into scary zombies and ghosts. However, after this rather weird reaction from my friends, I decided to ask my brother what he thought of the idea before we booked it. Originally it was going to be a surprise. Lucky, I did ask! He thought it was a terrible idea for a birthday gift and moaned about how cold it would be. Instead we celebrated by going for a meal with my mum and dad and then he invited some friends around to our house for the evening. I remember when I was that age I was always having my friends around and playing silly games and listening to music. But times have changed. I felt so old. The kids drink like fish and listen to the most horrific noise. Me, my mum and friend Peter were standing in the kitchen for most of the night trying to keep our eyes open. At one point mum suggested that we get scrabble out haha. But the main thing was, Fraser had a good birthday and it was lovely of his friends all to make the effort.
Christmas was nice but quiet this year. It was actually the first Christmas in 3 years that I could actually eat a full Christmas dinner. Halleluiah! I really enjoyed it and loved having a relaxing pyjama day with my family.
Most recently, on the 30th December I went to see the psychiatrist and after years of the hospital being vague, they were finally willing to put a diagnosis on the problems I have been suffering from. Not really much of a surprise, apart from the long list of acronyms that most people wouldn’t understand. According to pain therapists, my physiotherapists, psychologist and psychiatrists I have post-traumatic stress disorder, chronic fatigue syndrome, overlapped with fibromyalgia, Agoraphobia and Depression. Phew what a mouthful that is. With everything going on I probably will write a second post on this when I have the brain capacity.
As some of you may be aware, alongside my book launch, I have continued to create material to be sold through my blog and charity projects. This material has taken months of research and writing to compile. After speaking with some of my jaw surgery friends and online family it was decided that it may be a good idea to bundle all of the booklets and material into one package for patients to purchase. The package is aptly entitled: Jaw Surgery Survival Pack. Enclosed in the pack is everything you need to prepare you for your jaw surgery / orthognathic surgery journey. This pack will guarantee that your mind is put at ease before, during and after your surgery. It will also help you to speed up your recovery through the use of tried and tested self-help tips. As an added bonus, I have decided to reduce the pack from £99 to £49 for the duration of January.