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!!!!
At this very moment in time, I feel like my body spent the whole of last night trying to get back at me for writing a positive post yesterday. I had spent the whole of yesterday feeling rather odd, like half my brain was missing and the other half was covered in fog. By the evening my jaw was really playing up, with my dystonia pulling each side of my face in opposite directions, which was agony, this of course then led on to hours of Non Epileptic Seizures. Consequently I have woken up this morning feeling like my body has been run over by a bulldozer and my head been repeatedly hit by a hammer. However on the bright side of things, today my jaw Dystonia is a lot better than yesterday.
I have decided that today I shall completely avoid solid food and only consume softer food such as soup or yoghurt, in an attempt to try and prevent my Jaw from playing up so much, as I really want to be able to enjoy tonight’s New Years Party.
Tomorrow I plan on writing a letter to my consultant, to ask for a date for him to administer my injections and to ask for a plan to be put in place for future injections to be administered. I am hopeful that I shall not have to wait to much longer for these injections, considering he was meant to do them several weeks ago, but failed to give us a date.
I am hoping that the New Year shall be filled with positivity and improvement.
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.
Yesterday I went out to the cinema to see the new James Bond film. I was really excited, yet filled with nerves. The reason for the nerves was that back in August I was diagnosed with Non Epileptic Attack Disorder, my seizures seemed to be triggered by extreme pain, lights being shone directly in to my eyes and flashing lights. Despite the fact that I have not had a seizure in over 5 weeks, I was still worried, after all with the amount of explosions that there are in James Bond films, there was bound to be some flashing lights.
So you can imagine how ecstatic I was, when we got to the end of the film without having any seizures. The flashing lights had merely set my dystonia off, which left me blind for a few minutes. The was yet another huge step forward for me, and has filled me with confidence. It was a very successfully and enjoyable experiment 🙂