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

Benedict’s revenge

I have had a rather busy and sociable week. It has been completely brilliant and was a slight taste of ‘normality’ for me. Normality and independence are something that I desperately cling to, as I refuse to give in to Benedict’s attempts to seize control and conquer my body. However, when you have Dystonia a busy day is enough to exhaust you, so a busy week was perhaps a step to far. I still think this week was so worth the last few days of Dystonic  antics though!

Benedict, my little unwelcome Dystonia alien, decided to start playing up on Friday night. My right hand/arm had gone into a spasm, and started to tremor, my head also had a tremor going on that looked like I was shaking my head to say no very fast, and my back decided to bend backwards, in an attempt to fold me in half. As you can imagine this was extremely painful and rather distressing.

Then last night my leg decided to spasm. Now normally I can just about control my emotions when my Dystonia plays up. Usually it is only a few choice colourful words that escape beyond my spasming lips. However this particular leg spasm was agony, and had me in floods of tears due to the pain. Then my arm decided to join in. By this point I was extremely upset, and rather angry at myself for giving in and letting out my emotional response to the spasm. Yet they do say that a cry now and then is healthy, so perhaps I actually did myself a favour.

Today was also eventful. Even though the day was relaxed, we just sat quietly at home, as my grandparents and my man were visiting, my body still deemed it necessary to act up. I can only presume that the many activities I have done this week had triggered the hideous spasms I have experienced over the last 48-72 hours. I woke up at 5:30 am this morning to my arm spasming and my head doing its no no tremor. Then my leg put up a big fuss when I attempted to get dressed. Through-out today my arm/hand has been having spasms and tremors often and violently. At one point I honestly though that if the spasm carried on for much longer then my shoulder would end up dislocated – thankfully it eventually ceased. At other moments in time the tremor in my arm was so violent that I ended up hitting me sister.

I have currently given in to the spasms and pain, and retreated to the quietness of my room. However I have not come here to dwell on the problematic issues that Dystonia causes. I have returned to my room, to relish in the memories of the week, to mentally high five myself for the accomplishments I have made and to look forward to the days ahead. I cannot wait for tomorrow afternoon to have a consultation with a personal trainer that I hope to work with. The beauty of having Dystonia is that you know that even on bad days that things can only get better! There is so much to look forward to!!!!

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Comments on: "Benedict’s revenge" (1)

  1. My name is lelia and I so much agree with on that note .i also have dystonia and I embrace as gods gift and look forward to tomorrow

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