Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Time For A Change

I haven’t blogged in a while. When I am asked why my automatic answer is because I have had a lot on my plate with studying for my upcoming exams. However I have this nagging voice in the back of my head that’s pushing me to admit that there is more to it than exam stress. The combination of Dystonia and Complex Regional Pain Syndrome is hard to cope with. Emotionally getting my head around it has been hard. Whilst the CRPS is not as bad as when I had it in 2009, it is still able to cause enough pain to cause seizures.

the-duff-posterI went out with a close friend to the cinema today to see The Duff ( a fantastic romantic comedy). It was the perfect medicine in more than one way. It had me laughing and finally relaxing in my own skin and switching off to the constant pain. The film enforced the message that you should accept, be happy and own yourself; that you should not change for anyone. This helped me to really wake up and realise that I had been thinking of myself as a condition not as a person and hiding away. We have no idea what way any of my conditions will go. I might deteriorate over the years, I may improve, or I continue to be on this rocking seesaw. Not knowing is ok, I have now accepted that. However I have to stop letting that hold me back from living life. For far too long now I have thought to myself I shall do that when I am a bit better. We have no idea if or when that will happen. That’s ok, I don’t mind, as long as I keep living. So it’s time to make a change and accept that I’m ill, but life goes on.

On a side note we have started planning our May tea party to raise money for The Dystonia Society. So keep a look out for updates!

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Comments on: "Time For A Change" (2)

  1. Good to hear that you enjoyed the film (which I haven’t seen and can’t comment on) – you continue to impress me with your drive and determination. While your message about being true to yourself is a good one, I do not think that we should always carry on “being ourselves” regardless – sometimes there might be ways that we could or should improve and we should always be prepared to listen to constructive feedback from others!

  2. Hey, thank you for running your blog, it’s a really big inspiration to me and has helped me through the darkest days of my life. I understand what you mean when you voice your woes regarding your studies. Like you, my university studies have been affected as well, due to dystonia that spread around my body, which I contracted after a neck injury combined with tardive dystonia + dyskinesia.

    Like you, I too feel that the hardest part of it all is not knowing, and even worse, knowing that the condition could very likely get worse over time. Like you, my so-called “bright future” has been erased to a bleak smudge because my disorder may render me unable to hold down a normal job in future, even if I do manage to graduate.

    You have no idea how much emotional support I derive from your blog, as so few people around my age have problems like this and there’s nobody to relate to most of the time. Loneliness comes along with this disorder.

    Thank you so much for being here, for being alive, and for wanting to make the most out of life. I have been reading your blog for quite a while, and I just want to say I LOVE YOU YOU ARE A GREAT HUMAN BEING, YOU ARE NOT ALONE. If you need a listening ear, need to vent, need opinions, or just want to chat, email me at anubiscuit@hotmail.com 🙂

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