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.
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
So Dystonia Awareness Week 2015 has officially drawn to close for another year. It’s been great seeing pictures of people dressing in green and wearing green wigs to promote awareness on social media. I must admit I’m still struggling to get parts of the green dye out of my hair, I may have vague tints of green streaks for a few more weeks but that’s not for lack of trying.
Whilst Dystonia Awareness Week may officially have drawn to a close, our annual fundraiser for The Dystonia Society has yet to take place. We shall be throwing this in June, and shall be announcing the upcoming date this week. So keep your eyes and ears peeled! We hope to see as many of you as possible for tea, cake and some awareness!
I am thrilled to report that over the awareness week almost 1500 people viewed my blog. Of which 937 were new visitors. This completely hit last years numbers out the window. Hopefully everyone learned something new or helpful.
There are a number of different options sufferers are offered when diagnosed with Dystonia ranging from Deep Brain Stimulation to botox injections/ medication, and physiotherapy and psychotherapy. Unfortunately depending where you are in the world this can be a bit of an insurance or post code lottery. Each of these different treatment options has it’s own list of pros and cons, and they are not always the same for each suffer just because it helped another.
Deep Brain Stimulation can help significantly improve the symptoms of Dystonia, which in turn improves a persons quality of life. I know I would jump at the chance of having the surgery if I was eligible, but unfortunately like many others I am not classed as being ill enough for it. There is also no guarantee that it would improve symptoms, there is a chance of a negative complications during surgery or if an infection occurred post-op.
Injections, medication, physio and counseling also can help sufferers manage the symptoms and get about with their day to day life. However their is no guarantee how long the improvements will last. For example, over time its possible to develop antibodies and grow resistant to botox injections.
Treating Dystonia generally involves a combination of all of the above. One treatment alone often is not enough. however every individual is unique and there is always an exception to the rule.
Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.
Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!
I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!
I can only hope that as awareness for the condition spreads the attitude around it changes too.
Please check out today’s VLOG which is on the same subject https://www.youtube.com/watch?v=CJZz7_EMUtE
When I was diagnosed with Dystonia in 2012 it took a few days for reality to really sink in. But after allowing myself to accept the diagnosis I launched myself into researching the condition. Something I’m sure many of you sufferers do. The problem with the internet is that you can find just about anything you want to find on it. Researching useful information can be problematic.
I was lucky and stumbled across The Dystonia Society’s Webpage quiet quickly (http://www.dystonia.org.uk/). Their website is packed full of easy to understand information and resources. It helped me come to terms with my condition and understand fully the condition I was dealing with. Previously I had not understood that it was my brain sending incorrect signals to my muscles causing them to go into painful spasms. I had simply thought they were just spasming.
The Dystonia Society over the last couple of years have been a wealth of knowledge and their helpline has been of great comfort. Another fantastic site is The Dystonia Medical Research Foundation (https://www.dystonia-foundation.org/). This is the American equivalent of the The Dystonia Society and is another resourceful website, providing fantastic information on the condition and advice. Websites such as these two are a great resource for suffers to use as a tool to educate Doctors, health professionals and family members who don’t understand the condition. They even have a have section for schools. I find myself checking these sites constantly for new material I can use to help advise others and am never let down.
Please also check out today’s awareness VLOG on Youtube https://www.youtube.com/watch?v=JEGq26wHwpo&feature=youtu.be
When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.
Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.
I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.
I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.
I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.
To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare