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

Posts tagged ‘Mindful Meditation’

Mental Health & Chronic Illness

Mental Health awareness day was last week and I wanted to write this blog post then but honestly it was too hard. My mental health right now is not great. I’m by no means awful but it’s not where I’d like it to be. It’s been an accumulation of being chronically ill for numerous years and stressful life events adding on top of that.

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A major part of the problem right now is my medication. One of the many side effects that many of my medications can cause is anxiety and depression. Whilst I wouldn’t class myself as depressed, I am aware that my anxiety and amount of pain attacks have increased recently and I’m defiantly on the weepy side. However life events haven’t helped either, Just last week I went to collect my little boys prescription from the chemist and found myself being motioned to sit silently on the floor with him due to a lady with a knife ransacking the place; this understandably has made me anxious about leaving the flat on my own, even though I know that I am being irrational as I know that the chances of being in that situation again are very small.

Yesterday I attended the emergency eye clinic at my local hospital and was informed that I have my fourth bout of optic neuritis is a year and a half. Due to this and some more symptoms they have made the decision to refer me to a specialist neuro and carry out testing again for multiple sclerosis; another spanner in the works.

Between my physical & mental health plus the stress of uni work, I feel like I need to let myself have a good cry, pick myself up and carry on except there isn’t time to cry. Don’t get me wrong I love my life but I’m finding it hard to know what to do to help myself. I force myself to do what scares me like leave the flat but it’s draining working up the courage to do so. I would talk to the doctor about it but I daren’t risk it as I know they will stop my painkillers if they start worrying about depression which I need for my seizures. I have ordered myself a mindful mediation manual and CD and hoping that a holistic attitude will help.

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Crash Landing

It would seem that ever since the first of January all I seem to do is either fall over due to a leg spasm, or collapse due to a seizure. Yesterday at my support/research group, I had a Non Epileptic Seizure, triggered by pain from my jaw, whilst sitting in my wheelchair. Now I had always thought that if I had a Seizure whilst in my wheelchair I would be fairly safe, as I was in a ‘contained’ environment. Turns out I was wrong. I regained consciousness to find myself on the floor. My seizure had shaken me out of my wheelchair onto the floor. Luckily the people around me acted as quickly as they could to make sure I didn’t do myself any harm, whilst the others fetched my mother to find out what to do. Thankfully  other than really bruising my coccyx, and generally being a bit achy, I was fine.

My Basal Ganglia, however, seems determined to inflicted pain on me. I have lost count of how many times I have fallen over because of my leg Dystonia today. My foot flips over and my leg spasms backwards, or sometimes up in the air, and I end up on the ground. This means that who ever is helping me walk also ends up on the ground too. I think my leg has been so bad today in reaction to lasts night collapse. Due to yesterdays collapse and today’s many falls, my body is really rather sore. I feel like I am covered in bruises from head to toe. Tomorrow I plan on resting my body, to give it time to calm down, and to meditate.

Today, when I wasn’t falling over, I wrote a list of a questions for my meeting with my consultant on Tuesday. I want to go as prepared as I can be, so that the situation I have been in with him for the last two months, does not ever happen again.

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.

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