Yes that’s right Dr, at the tender age of six I was bitten by a mythological creature. Within six months of this terrifying beast having a chew on my thigh you diagnosed me with M.E. You had exhausted all other diagnostic criteria. Not once did you consider that something so dramatic as a dragon bite may have occurred. Had you have taken a thorough medical history maybe right from the start you would have suspected Lyme Disease, perhaps you would have treated me and cured me of this hideous illness straight away. But how silly of me. You are a Dr, you do not deal in the likes of maybes, possibilities and mythological creatures; only cold hard facts, ones that fit nicely into your tick boxes.
Over the last 17 years do you know how many times your kind have uttered the words “It would appear you have X, but I am unsure because you just don’t fit into any of these boxes exactly!” Since when did the boxes become so rigid and unadaptable, are we not all unique individuals with our own mix of conditions that affects us all in varying ways? If as people we are so unpredictable in the way a condition may manifest, why then are your boxes so unforgiving. Only Monday of this week the Dr sat there trying to decide whether to diagnose me with inflammation of the optic nerve in both eyes or inflamed retinas in both eyes. Frankly the lovely woman was lost, I had her quiet confounded. She could see plainly that I was rather ill, her barrage of tests confirmed that, but not one of them could put their finger on as to why. I sat there quietly next to my mother, both of us whispering “The dragon bit me 17 years ago, but you don’t believe in Chronic Lyme Disease.”
Now replace the word dragon with a tick. This small seemingly insignificant creature is known to carry, in many cases, Lyme Disease. A disease that more often than not will report a false negative during testing due to the lack of accurate testing methods available. Oh but a lumbar puncture would pick it up you say? Yes, it sometimes does, but my neurologist swears me away from it for fear of making my Dystonia worse. One hospital says we will give you IV antibiotics that you need to cure you but we will only do this if you have an L.P, another admits they are 100% certain I have chronic Lyme but their hands are tied due to regulations that are out of date and blinded with inaccuracies.
Chronic Lyme is often hailed as the Great Pretender. You only have to look at me to see why. Here I am in another flare up of symptoms, attempting to treat each one as it appears. Its distressing really, knowing that IV antibiotics would cure but regulations prevent this as I’ve had both positive and negative results. So in the meantime it’s a guessing game of what will subdue the next round of symptoms for now.
If only Drs believed in mythological beasts like Dragons and Lyme Disease.
I was up in London today for an appointment with my fantastic neurologist. Whilst I always stress over the little things like timings, how the injections will go and medications, I never stress over seeing him. His manner is so calming that during the appointment I feel as if it doesn’t matter what he says, it’ll be okay as we will always put a plan of action in place to try and make the future as pain free and positive as possible! The hospital I attend has some fabulous Toy Story themed stickers on the wall in the waiting room which I love. As I’ve mentioned before I always picture my Dystonia to be a Toy Story style alien named Benedict. Which is why this picture naturally had to happen today 🙂
I’m currently coping with Optic Neuritis on top of everything else. The hospital which I’m under for this had decided to leave it up to my neurologists as to whether or not I was treated with steroids. He has decided that he wants me started on steroids and wants an MRI with contrast carried out, as this is my second flare up in six months. I shall be spending Thursday at the eye hospital so hopefully I can talk to them about getting all of this put in to place and moving forwards.
Overall today went extremely well.
When I was diagnosed with Dystonia I developed a need for control; exercising it in life helped me cope with the lack of it in my body. Consequently, I don’t cope well when things are beyond my ability to manipulate. On the evening of the 1st May I was sexually assaulted. I’m not going to go into details. However, for a person who craves control in life this was yet another stark and frightening reminder of how little control I have. Naturally the police were involved, and I must say the support I have received from both them and my university has been outstanding. Unfortunately, due to a lack of forensic evidence the police were unable to charge my attacker. Whilst a disappointing outcome there’s a lot that can be taken from this ordeal. As many of you may have picked up from my blog posts over the last week, my emotions have been all over the place; one moment I’m smiling, the next I have a hatred for all near me, and then I’m crying. It’s been exhausting.
Whilst retelling the attack to the police officer working the case, he mentioned to me that many victims of assault emotionally spiral and are unable to cope; he asked that I try not to let this happen to me. I informed him that that isn’t me; I am a stubborn woman. Whilst I’ll admit the last week has been a bit up in the air, I haven’t hidden away from the world. If I can live with Dystonia, then I can make it through this. I simply refuse to let anyone have a negative impact on my life. It is mine and I will be happy!
Focusing on the positives around the incident has been key to enabling myself to feel like me again. I have been thinking about when in 2012, during a stay in hospital, a rather arrogant neurologist, who had missed the module on bedside manner, misdiagnosed my symptoms as psychosomatic. He informed my family and I that my symptoms were due to trauma and stress, and that they would continue flaring up whenever my stress levels increased. He was obviously wrong and months later I received a correct diagnosis, but this misdiagnosis and subsequent few months of incorrect treatment still irk me. However, I cannot remember the last time I was as stressed and emotionally charged as I have been over this past week, but my Dystonia has stayed at its usual spasm level throughout – despite my Botox being overdue. Proving once again that the previous neurologist was wrong. It’s a fact that for me, provides a gateway to happiness in what has been a dark time.
Whether you are ill or not having a support system in place is something everybody needs. Everyone deals with varying difficulties in life, and whilst experiencing these a support network helps keep life ticking over and enabling you to feel like you can cope. Often during difficult times, it becomes very tempting, and easy, to simply shut yourself away from family and friends. I know personally that I would much rather deal with a problem by myself, this is simply because by talking to others the issue feels more real and daunting. However, acknowledging it and making plans to resolve it with people you trust is a key to moving forwards.
When I was first diagnosed with Generalised Dystonia in 2012 I shut myself away from most of my friends; even a trip to Tesco was difficult as I did not want others to see what had become of me and judge me. Reflecting back on this now, I know that this was more a fear of seeing others react to my spasms and having to admit that I really was having to deal with this. A huge chunk of me wanted to pretend it was simply an unpleasant dream. Despite knowing that talking amongst trusted individuals is helpful, I still fall back into bad habits whenever life goes slightly askew.
This past week I have been coming to terms and dealing with some difficult situations outside of Dystonia. Admitting that they happened and needed dealt with was a hugely difficult step, but a necessary one. My botox is a week late this time round, I am receiving it this coming Wednesday, so dealing with a combination of life being more flawed than usual and my spasms progressively increasing in severity, has been more than I felt I could cope with. This is where a support network is vital. Family and friends can help give an outside perspective on how to manage life events, and advise what steps to take. This is an invaluable tool! Sometimes though, you need more than just the loving circle of individuals. Realising this is key. I have just started talking to a councillor. This is something I had hoped I would never have to do again, but it’s been necessary and I know is helpful.
Living life with Dystonia is never going to be easy. I greatly admire every individual who does so. Realising when you need support is not a sign of weakness but of great strength. So please remember to talk to those around you. This condition drives us all barmy, sometimes we need grounding.
There are many aspects to life with Dystonia; to address them all would take hours. So I’m going to focus on just a few this evening. As with any condition, once you are diagnosed, many sufferers go through a soul searching period. This is simply trying to work out who you are now. Inevitably we all change, for better or worse, once a chronic condition develops. You’re still the same person, just with a few modifications.
At eighteen I was a Student Midwife. There was not a lot else that made me who I was. I was a daughter, girlfriend, and student. I felt fulfilled. If you had told me then that in less than a year I would be unable to practice midwifery I would laughed. Midwifery was my passion, to even entertain the thought of another career seemed ludicrous. I could talk about the subject until I had grossed people out enough that they were begging me to stop! Now at 23 I am a daughter, student, freelance writer, blogger, reflexologist, advocate and Spoonie. Midwifery is but a happy memory that still brings a tear to my eye. I put up with less drama, I have no patience for anyone who only wants to be around during the more upbeat moments of my condition, and I am a hell of a lot stronger than I used to be.
It has taken four years to get to this stage. I have gone through denial: refusing to acknowledge that my illness won’t just disappear. I was so lost in this that I even reapplied and was interviewed to go back to study Midwifery. A small moment of madness in reality. I have grieved for the person I was, and that life that I lost. I have floundered in uncertainty, whilst those around me helped keep me from sinking into waves of despair. Now I finally have accepted who I have become. Despite everything I have been through, and am still going through, I am happy and thriving.
There are still days when I question why I have experienced the things I have. Only last night I was joking that I must have been a dementor in a previous life, for why else would I be sentenced to this path? Melodramatic I know, but it doesn’t make that feeling any less. Despite my illness I have no regrets. I am surrounded by people who love and support me every time I fall. Through my Dystonia I have had the opportunity to meet and talk with a number of individuals who I admire greatly. I have made many new friends. I have contacts around the globe! At the end of the day, I am happy. I cannot ask for anything else.
Currently the exact cause of Dystonia is not known; though a number of problem areas have been linked to the condition. Research has shown that there is a fault with a section of the brain called the basal ganglia. It is only in a small minority of sufferers that the condition has a clear cut cause.
Dystonia can appear on its own, secondary to another medical issue or as a result of medication – this is known as Tardive Dyskinesia. At the current time 80% of children diagnosed with Dystonia have it alongside a primary condition for example Cerebral Palsy. In adults the condition can be caused by a stroke and other neurological issues.
As research is progressing more genes are being found to be related to different forms of the condition. Studies have found that some cases of Generalised Dystonia are hereditary. However even if there is a genetic issue it does not guarantee that you will pass on the condition. It is thought that there is between a thirty to fifty percent chance of a child inheriting Dystonia depending on the mutated gene and type of Dystonia. So far over 20 genes have been identified in relation to Dystonia, with more being found all the time.
For more information on the genetic links to Dystonia I recommend http://www.dystonia.org.uk/index.php/about-dystonia/causes/is-dystonia-inherited
Living with a chronic condition can have a detrimental effect on the sufferers attitudes or mental health. Many people experience disbelief from both the public and medical professionals during their fight to achieve an accurate diagnosis. Due to this many choose to refrain from openly talking about mental health conditions and passed traumas with doctors and those close to them. Often this becomes an early defensive behavior that is learned in on order to prevent pre-emptive judgement.
In 2012 during my fight for a diagnosis I found myself in the John Radcliffe for 8 days as I had developed Pain Triggered Non Epileptic Seizures, and my Dystonia had spread from my jaw to my eyes. I was very honest about my past with the consultants in charge of my care. I expressed that I had suffered physical abuse during my teenage years, that I had sought help and that I was now in a much happier place. I still view being honest with the doctor in charge of my care as a mistake however, due to the fact I had had this unfortunate experience I was informed all my symptoms were psychosomatic, and that I need neuro-psychiatric contact. As I’m sure you can imagine I did not take this well. I remember clearly stating that I would go talk to their psychiatrist, purely so I could jump through their hoops and prove them wrong.
Mere months later I had my diagnosis of Dystonia and a letter from my neurologist stating that my past experiences had no impact on my current state of health. That letter has not stopped doctors and acquaintances questioning me over the years though. On numerous occasions I have been asked if I am depressed. I am generally an optimistic person who loves nothing more than to laugh. Yet being repeatedly questioned has its impact. I am defensive of my health, I feel like I have to justify myself and that leaves me feeling vulnerable. For if people struggle to believe me when they can see the physical symptoms in front of them, what else will they close their mind too? Vulnerability is an emotion that too many sufferers of chronic illness experience. It comes in both physical and emotional forms. One of the best things a person can hear is ‘I believe you’. It is an empowering statement that allows us to relax and breath. Acceptance free of doubt opens up a line of honest communication. Something that we all need.
In the United Kingdom it is estimated that at least 70,000 people suffer from Dystonia. Despite being the 3rd most common neurological movement disorder many people have never heard of it. The word Dystonia describes uncontrollable muscle spasms which are caused by the brain firing incorrect signals to the muscles. There are many types of Dystonia however, and no two types present exactly the same. The incorrect signals can cause the body to take on abnormal postures, tremor, contort and more. Many GPs will not see the condition during their practising career which can make knowing when to refer for a diagnosis difficult. Many sufferers go years before diagnosis occurs.
The condition is incurable and a tricky one to treat. Whilst many people manage to live full lives with appropriate treatment, this fact does not lessen the impact of the condition. A task you may be capable of preforming one day you may be unable to perform the next. If the condition appears in adulthood, in the majority of cases, it will remain contained to this area – this is known as focal Dystonia. However typically if the condition appears during childhood it generally will spread across numerous parts of the body -Generalized Dystonia.
Obtaining a diagnosis and receiving treatment can make a huge difference to a person’s quality of life. Without treatment I would be unable to see consistently, I would struggle to communicate due to jaw spasms, my head would be lopsided and my arm would be uncontrollable. Due to lack of awareness reaching the necessary professionals diagnose can be difficult, which is why awareness week is so important; increased awareness will not only help improve diagnosis times but can lead to more funding to find a cure.
Are you doing anything for Awareness Week? If so get in touch and let me know.
Green for Awareness Week
Dystonia Awareness Week has arrived! This naturally got me reflecting on my journey with my alien so far. It has been a long four years to say the least, but the experiences I have had on my journey so far has been worth it. I don’t think I will ever be 100% adjusted to the lack of control I have over my body, but I’ve accepted, adapted and molded who I am around my quirks.
At 17 when I was diagnosed with Oromandibular Dystonia I didn’t understand what was wrong with me. I thought it was some sort of infection causing the issue and that once dealt with it would just be an unpleasant memory. When I was diagnosed with Generalised Dystonia at 19 it felt like the end of the world. Emotionally I was a mess. I couldn’t wrap my head around how I had gone from training as a midwife to being unable to brush my own hair, let alone stand up. Now at 23 I have hope.
If you spoke to me about the condition even two years ago I would have told you that I could not imagine living the rest of my life with it. The idea alone used to reduce me to a quivering sobbing heap. Despite the pain and the spasms, I can now picture the long term. I understand that my Dystonia isn’t going anywhere but I’m okay with that. It’s part of my life now and although it can be pretty dire, it has at the same time filled my life with so much laughter.
As is now my annual tradition I shall be blogging daily through-out Awareness week, and going green for Dystonia. So hop on over here daily for more information on the condition.
For more on Oromandibular and Generalised Dystonia head on over to http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/mouth-or-tongue-dystonia
After a year and a half of waiting tomorrow I am being admitted into The Royal National Orthopedic Hospital Stanmore for intensive rehabilitation for my Ehlers Danlos Syndrome Type Three. I am a mix bag of nervous and excitement. From talking to previous inpatients of the program it sounds extremely positive and successful. There are many different components to the rehab, such as hydrotherapy, physiotherapy, pain management and sessions with psychologists. On the most part I am very optimistic, my consultants all feel that the treatment should offer significant improvement.
The only part of the program I am wary about is the psychology sessions. If I could opt out of these I would. Now I shall be sensible and fully cooperate with them but I can’t help my reluctance. I have had years of sessions with varying types of psychologists. Since I have been ill I have had specific sessions with cognitive behavioral therapists to attempt to control my seizures, however out of the three therapists I have seen only one has looked at me holistically. Due to this my file now contains a note from my neurologist instructing therapists not to focus on my past and informing them it has no impact on my medical situation. Click on VLOG and blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I am going to be seeing over the next few weeks will be lovely, I worry that they will be like the many I have seen before.
I get admitted at 8:30am tomorrow morning, so it’s not long to go now. My neurologist is convinced it will make a huge difference to my jaw and I’m keeping my fingers crossed he is right.