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

Posts tagged ‘silver lining’

Illness and Inspiration

Over the last week I have not been well. My seizures have increased to the point that one night I seized from 12am till 6am, my body was spasming constantly and I was feeling really under the weather. The last three days I have had a temperature along with a sickness bug, so have spent the days in bed resting. As I have mentioned before Dystonia does not respond well when the body has an infection/bug, for me this means it acts up a lot. I have put this last week of bad spasms and seizures down to my body fighting off the bug and then succumbing to it.

Today whilst reading through some material on the Dystonia Society’s website I came across a section on Dystonic Storms/attacks and it has really got me wondering if my ‘new’ Non Epileptic Seizures are actually not Non Epileptic attacks and Dystonic Storms instead. In my ‘new’ type of seizures I am completely conscious  however I am unable to communicate verbally, sometimes I may be able to do this via twitching a finger or blinking my eyelids, other times I am unable to communicate in any form, which is terrifying! The Dystonia Society describe Dystonic Storms as :

episodes of a rare condition called status dystonicus where people develop frequent and intense episodes of severe generalised dystonia. A single episode of this severe dystonia may be referred to as a ‘ Dystonic storm’ or ‘ Dystonic attack’. They usually occur in individuals who already have dystonia affecting a lot of the body…During an attack people do not lose consciousness  and are completely aware of their surroundings but they may not be able to communicate to others as the muscles of the face and larynx are often involved. “

Naturally when I next see my consultant – which shall hopefully be soon – I shall put this to him and get his thoughts on the matter. – if you would like to read more on Dystonic Storms or Dystonia in general then please visit the Dystonia Society’s website http://www.dystonia.org.uk/index.php .

I found this picture earlier on today and it inspired me.

I am not going to have a perfect day everyday, and some days I am going to struggle to find the silver lining. However something good happens everyday, it may a day from hell, but if I woken up that day and I am alive, well that is fantastic and I am going to be grateful for it. There is no point in dwelling on the negatives in life.

So I am going to ignore my spasms and seizures, force my spasming face into a smile and carry on.

Jaw Spasms

Friday to yesterday afternoon went fantastically, for once the Dystonia alien decided to take a bit of  a break and let me be normal (well as normal as I could be). I thoroughly enjoyed every moment of it. However last night after dinner, the alien decided it wanted to make itself known. It started with my jaw/facial muscles, being pulled in every direction, which caused absolute agony in my TMJ (the jaw joint). Shortly after the spasms ended, another one started, which was more extreme than the last. Due to the pain the spasms were causing, I ended up having a Non Epileptic Seizure. This annoyed me somewhat, as I had managed eight weeks without one.

Since last night my jaw has stayed in a fixed spasm. It is being pushed to the left, whilst also being stuck slightly open. I cannot even begin to describe the pain that this is causing. Due to this I have had to resort to stronger pain killers. These pain killers are great but they do make me feel like I am away with the fairies. However I would rather feel a bit odd, than be in agony. This spasm has also created other problems, such as I am now unable to eat anything other than soup and yoghurt, due to the way the jaw has spasmed, and I am struggling to drink even through a straw. So now all I can do is wait for my GP to send off a referral for me to see someone about treatment.

There is a positive side to all of this though. I have been trying to lose some weight so I am hoping that by only being able to eat yoghurt and soup, it should help with the weight loss. 🙂 There is a silver lining to all problems.

 

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