Posted in Archive, January

Consultant News and Meditation.

Yesterday evening I finally received an email from my consultant saying he would see me next Tuesday at 1pm! I am so happy, it will be such a relief to have the Botox done, so that my Ormandibular Dystonia will not cause me any pain for a few months. Another bonus is that when the jaw pain eases off, so do my Non Epileptic Seizures! I am going to have a word with him while I am there, about what I do when the Botox wears off next time, as I find it unacceptable to have to battle for so long to get seen!

Over the past couple of months I have read a lot of articles to do with meditation helping with Dystonia. In most cases stress aggravates Dystonia, so doctors often advise their patients to try to live a ‘calm and stress free life’. This is rather ironic, considering that Dystonia causes stress itself due to the pain it inflicts and its life changing nature. This is where meditation comes in, particularly Mindful Meditation. It is all about sitting or lying down comfortably (I know this is often the hard bit to do for Dystonia Sufferers) and trying to focus on the present moment, feeling calm and relaxed.

When I first heard about Mindful Meditation, I was not sold by it, I was very dubious as it seemed a bit ‘fluffy’. However after reading more into it and reading claims that it really did help keep  stress levels down which in turn calmed  Dystonia down a bit, I found myself thinking why not. I am at the point where I shall try anything, if it means that I can have some sort of slight relief from my Dystonia.

I ended up scouring Amazon for books on meditation, Mindful meditation in particular, until I found three, that not only looked like what I wanted, but had a lot of positive reviews as well. I brought Living well with Pain and illness by Vidyamala Burch, Relaxation for Dummies (also comes with a fab CD to guide you through your meditation) and Heal Yourself by Anne Jones (I am just about to start reading this one).

After spending a few days reading through Living well with Pain and Illness, and Relaxation for Dummies, I decided to try meditating for the first time last night. I put on the CD provided to help guide me through it. As it was my first time meditating, I chose to do the shortest one first. I must admit that I was pleasantly surprised. I had started the meditation in a lot of pain due to my jaw spasm, and was feeling rather stressed over it. However by the end of it I was feeling fairly relaxed. I was still in a lot pain, but I was not stressing  as much over it.

Research shows that after a few weeks of doing mindful meditation, that the brain actually shows a physical difference when scanned  The majority of scans show the stress section of the brain has actually shrunk, and the positivity section was lit up/grown. I am going to attempt to meditate twice a day for two months. At the beginning and end of the meditation, I am going to document how I feel and how my dystonia is. Then at the end of these two months I will compare how I am at the end of the ‘experiment’ to the beginning of it. It shall be an interesting and hopefully positive experience.

Posted in Archive, January

The Battle Against My Neurological Demons!

Today has involved yet another fierce battle against my Dystonia and my Non Epileptic Seizures. A battle which is still yet to be won. I try to defend myself against my neurological demons by sitting up as slowly as possible  attempting to use distraction techniques as I attempt each task, but so far my neurological demons are one step ahead of me, constantly ready to launch their next attack on my body.

I am spending most the day in bed at the moment, to recover from Tuesdays incident. Just to get up to go to the toilet is almost impossible. 9 out 10 times just by sitting up a seizure will happen, this then means I have to try to sit up again, which is rather painful due to the sprains and soft tissue damage caused by Tuesdays fall and seizures. Once I have won the battle to get up, my mother and one of my siblings have to help me walk to the toilet and back. This can take a long time in itself as if I collapse and seize on the way there, I find it extremely hard and painful to get back up.

We  are still unsure of how many seizures I am having, as some of them I am completely unaware of. My body hurts a lot but my head is the worst. I feel dizzy often and have a constant feeling of there being too much pressure in my head. I feel like someone needs to put a needle into my head and drain out whatever is causing it. It is a rather painful feeling.

This battle for control is very physically and emotionally draining. I desperately want back the control of my body, but my Neurological demons seem to have other plans for me at the moment. I am hoping that my consultant (when he bothers to get back to us) will be able to provide us with some advice.

 

Posted in September

Another fierce battle for control

Today i decided to attempt the dangerous  task of straightening my hair. A task that to most is rather simple and requires very little brain power. For me it involved a fierce battle between myself and the alien, both of us fighting for control of my face, right arm and hand.

Have you ever tried straightening your hair, whilst your arm and the hand that you would normally use is stuck in a painful spasm behind your head? For those of you who are fortunate enough not to have experienced this, i can assure you it is not an easy task. After a long twenty minutes I gave in to the little alien, feeling rather proud of myself. My hair was not great but I had made a darn good attempt. A small win over the alien.

So far the alien is winning the majority of our frequent battle, but I am slowly catching up.