Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Archive for the ‘September 2015’ Category

Settling In With Spasms

It’s the end of my first week at university already and I love it here. I spend the majority of my waking moments laughing with my peers and attempting not to get lost. One of the joys about university is the simple fact that I am surrounded by a large increase in people, and this naturally means that there is diversity amongst the student body. Every day so far, I have met someone with a different type of medical condition. This has really helped me to relax and settle in.

12032298_762857283840053_87691901_nTypically my Dystonia hasn’t left me alone but I haven’t let that bother me too much. I twitched the other day and caught a police officer, who luckily was more concerned that I was okay than anything else. Truth be told I was torn between being mortified and trying not to laugh. I was simply embarrassed to the point of laughter. My new friends and flatmates have all seen a couple of spasms now and have handled them really well, mainly with laughter which is all I could hope for.

I phoned the Neurology hospital that I attend and they still have no idea when my next lot of injections will be, which is causing me some concern. My injections are due on 30th September, this would have been the seven week mark so was pushing it as it was. Unfortunately the hospital staff still have no dates to give patients as to when the injections are going to be. My spasms are unfortunately already beginning. My arm never really completely stopped spasming during this cycle. I am keeping my fingers crossed that I get will my injections date sooner rather than later.

Moving Day

12025935_761678247291290_633906675_oToday I moved into my halls of residence at Oxford Brookes University. Saying goodbye to my family was incredibly hard. On countless occasions they have helped me through painful spasms and watched over me during my seizures. However sitting here in my new bedroom now after promising my mum that I would be careful and look after myself, I feel immensely happy. I have been battling for three long years, but now that I have finally reached a place where I can cope with my symptoms myself most of the time, I have won.

I cannot wait for Wednesday when our introductory lectures start, but in the meantime I look forward to having some time to go out and explore Oxford.

Another Referrel

Eye-chartSitting back in the upright, green leather chair, I stare straight ahead at the wall with my left eye covered up, where supposedly I should be able to see two rows of letters. I can’t see a thing. Not even there outline. I can see a white blurry box on the wall but that’s about it. The optician is quite frankly horrified at the deterioration of sight in my right eye. It has only been eight months since my last appointment, this dramatic result shocks us both. I thought my glasses prescription just needed a slight tweak. As it turns out new glasses cannot fix this issue. By the end of the examination she murmurs a simple sentence that chills me. “I need to refer you to the hospital, the muscles in your eye are not working properly”. What?! This was meant to be a routine appointment.

I questioned whether it could be my Dystonia, and while it was a possibility, she was not convinced it was. She explained the three different medical specialists I would most likely see at the hospital, the last being a neurologist. It always seems to end up there.Can I just have a new brain? As it always goes with these things it shall most likely be a wait before I am seen. In the meantime the possibility of another intruder controlling my body, my sight, hangs in the air. If it turns out to be Dystonia then other than piling me with more medication there is very little they can do, as they are unable to inject these particular muscles.

Over the years I have always been told that my left eye has compensated for my right. Its doing this now more than ever. With both uncovered I can see, things get blurry now and then but generally I’m okay. Cover up my left eye and the words in front of me are blurry, I cannot even focus on my own hands! It’s times like these that I want to take the faulty parts of my body out, line them up and just yell at them. Realistically I know it’s not going to get me anywhere, I’ve also banned myself from googling my symptoms, I know it will just tell me I’m  going to die, it’s one of the things google does best! I’d rather wait for hopefully a much more optimistic diagnosis from a Doctor.

So I’m keeping my fingers crossed that it’s not the Dystonia, and that it is a condition that they can easily treat! It would make a nice change.

The Ballet of I’m Fine

I’m very aware that today’s blog post may come across as me being grumpy, I assure you I’m not! I’m quiet cheery really. However I want to discuss a certain topic that is often glossed over when it comes to chronic illness. I like to refer to it as the Ballet of I’m Fine. We sufferers are experts in the dance, but it is one that we resent pirouetting to with a passion. Too often I see across the social media platforms people airing their feelings at having being cast in this ballet once again. But what else are they to do? Far too often we are acutely aware of people not wanting to know if we are anything but fine. It does not matter to them if our limbs are hideously distorted due to spasms, if our speech is slurred and our sight impaired. They are willing to blindly over look what they can see in front of them, as long as we dance the same old dance.

Well, why should we?! Let’s be honest here people, my ballet shoes are hardly ever worn, I air my illness through my blog. Yes I wish I didn’t have my conditions, but I do and I’m doing my best to raise awareness and carry on with life. So please excuse me if I retire from the Ballet of I’m Fine all together. I have been guilty of smoothing over my illness before to people I know would rather not hear about it. But enough is enough, the dancing shoes are going in the bin.

Chronic illness is not something to be ashamed off. We should not be living in the shadows with life passing by. So we are slightly different, we are unique. That simply makes us interesting. Instead of staring at me in the street, I would much rather you politely inquired as to what was wrong. I would love the chance to educate more people on the condition.

To you folk who care enough to truly listen to how we are holding up, you don’t know how amazing you are!

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