Last time I posted I felt that I was balancing on the knifes edge and was feeling pretty negative, well I’m feeling darn good today and I plan on enjoying it. My legs have not been as bad the last couple of days, the swelling in my knees is going down and the pain in them is tolerable. This improvement has made such a mental difference as the pain was really beginning to get me down.
Having my pain levels go down has made the biggest difference as it is the pain that I struggle to deal with the most. I can cope with my body spasming, tremoring and getting into unnatural positions but the pain is what I can’t cope with. Normally it would be my jaw that causes the unbearable pain, so at least having it in my knees made a change.
I am now on half term, which mean no college and no riding 😦 however I know that it is best just to let my body rest and recover this week, before I throw myself back into everything head first next week. On a positive note I made into college last week!! After being too ill to go in the week before I was determined to drag myself out of bed and into college – trying to get dressed whilst my legs where on strike was interesting but I managed it and it was the best thing I could have done. I know that I tire very easily these days but doing normal things like college make me so happy.
As I have mentioned before my cousin David and his friend Sam are running the London marathon for The Dystonia Society in April. I woke up to see a small article had been written on them in their local newspaper (Somerset). Its so positive to see awareness of Dystonia spreading!
I often say that I wish I could see inside my brain so I could have a better understanding of what exactly is going on. As other than all the medical jargon I have no idea what exactly it is doing…this picture describe it perfectly and makes me smile.
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.
For the first time since July 22nd I can smile! It takes a bit of effort due to all the botoux but I don’t care!!!
The operation so far is looking like a success! No pain, I can open my mouth, I can chew, my lips are still a tiny bit wonky but I don’t care, it can take a few days to see the full results of the botoux. Having no pain in my face, is the most amazing feeling! Now when my face decides to spasm, its is only my eyes, mouth and nose that spasm, my cheeks stay blissfully still!
I feel so lucky to have been treated by a surgeon who actually understands what Dystonia is, who listens to what you have to say and cares and likes to put some extra amount of botoux in as he finds it has better results!
So little dystonia alien, I feel like that’s another point to me… I’m catching up.