Posted in Archive, February 2016, September

Disaster Date 1

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As anyone who checked out my latest VLOG will know, after a highly entertaining bus ride the other week with a fellow spoonie I have decided to blog more openly about the dates I have been on. Up until now I have kept them to myself purely because they didn’t go anywhere, however as this lovely girl pointed out to me, it’s the sort of the thing she would like to read. So I’ve decided to do a couple of blogs retelling these dates – the guy’s names and locations have been changed!

Just before Christmas a guy I’d met a handful of times in the local clubs and around uni asked me for a drink. Thomas knew I was ill, so in my eyes we had already passed the first hurdle. There was going to be no need for an awkward ‘so by the way I have a severely dysfunctional body, you cool with that?’, conversation followed by spluttering and murmured excuses into half-drunk cocktails. I was feeling far more relaxed than I usually would do, simply because I didn’t feel like I had the ‘disability burden’ to get out there.

It was the usual routine, pull every outfit I deemed to be flattering enough to wear on a date from my wardrobe, and then force my friends to pick the winner. It’s a wonder they put up with me really. Whilst I was spending so much time on my appearance, I did not stop to think about strapping down my left arm. The spasms in this arm have been the death blow to so many dates but I still don’t learn. After all, it just isn’t the most attractive look. If I had thought about how twitchy I had been that day I would have seen the disaster in my plan.

The start of the date was fantastic; we were sat across from each other in an adorable cocktail bar with scented candles everywhere. The conversation was flowing with pauses only for laughter. We seemed to connect, and after several more drinks decided to go for a walk. Tom was a gentleman and held the door open for me, as I turned around to thank him and make a joke I twitched. I don’t mean a little twitch either, it was the sort that leaves you feeling bruised. In typical fashion I caught him in the neck. If anything is going to kill the mood on a date, it’s that.

At the time I felt awful. I spent a good ten minutes apologizing before we decided to call it a night. As you can imagine we’ve not spoken since, I wonder what put him off?! Luckily I can see the humor in these situations as they happen far too often.

Posted in Archive, May 2015

Trauma & Dystonia

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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

Posted in Archive, May 2015

Discovering Dystonia

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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

Posted in Archive, May 2015

Adjusting to Dystonia

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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