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

Posts tagged ‘Meditation’

Support System

Living with chronic illness is never easy. It impacts the majority, if not all, areas of your life. One of these areas is relationships. Whether this is friendships, family, or romantic relationships, chronic illnesses such as Dystonia can have a big impact. It is hard enough for the sufferer to understand what they are dealing with and cope with it, but for people who are not experiencing it themselves it really sums up their characters by how they react.

Personally I think it takes a lot of guts for a sufferer to open to their friends and family and admit that they have been diagnosed with Dystonia. It is not the easiest condition to explain. There is no rash or broken bone that they can see, no medicine that is going to cure you. You are sitting them down and admitting that you are not going to get better, that you may in fact get worse, but that you are hoping that a handful of medication and injections will help control the condition. People will either stand by you or they will turn their back on you.

I can remember when I first announced to those closest to me that I had finally been diagnosed. I was naïve enough to trust that my support system would stay intact. I never expected it to crumble around me. My relationship of two years broke down instantly, and many friends vanished into thin air. At the time I was lost, unable to comprehend how those I had thought would stand with me through thick and thin could just disappear the minute the going got tough. With time though I grow thankful that they did leave, it meant that I was left with a support system I could count on whenever I needed it.

When you live with Dystonia I think having a support system in place is one of the most vital things in enabling you to get by. Emotionally it means I know that I have friends I can count on to listen whenever I am having a bad day and am not sure how to cope anymore. Physically, I can be reassured that whenever I am functionally paralysed for example I know there are people I can rely on to help me. I know of some sufferers whose own family turned their back on them because they simply do not comprehend the condition well enough, I am blessed to have family and friends who are here for me 24/7.

Dystonia can be alienating, in life you do not often meet people with the condition. Surrounding yourself with people who love you despite having a brain that likes to be dysfunctional is important.

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Sleep & Dystonia

One of the things I am struggling with lately is getting to sleep and staying asleep. When I am tired my spasms tend to get worse, which makes getting into a comfortable position to go to sleep in is rather hard. Previously when going to sleep I would lie down in bed fully stretched out, however I can’t do this any more and this is proving to be an issue.

One of the symptoms I am struggling with at the moment is in my legs. I have a constant tugging sensation along with pain in my knees and thighs, which I seem to only be able to relieve by pulling my legs up. Although this does get rid of the painful sensations it certainly lessons it, however I then find it extremely hard to then straighten my legs back out again. Some nights I have had to go to sleep with my legs crossed. The pain in my legs along with the current pain in my neck caused by my new neck spasms is really impacting on my sleep.

Sleep is an important part of dealing with Dystonia. Having your muscles spasm constantly on and off through-out the day is an extremely tiring experience, which leaves you exhausted. I have often taken naps in the day just so that I have some energy to carry on fighting against the Dystonia with. Dystonia normally disappears whilst you are in a deep sleep, however when in a light sleep the spasms can appear. At the moment due to pain I am finding it extremely difficult to get into a deep sleep, therefore I am constantly woken up in the night due to spasms. This leaves me feeling exhausted still when I wake up and starts a vicious cycle.

At the moment I have taken to going to sleep with a hot water bottle under either my feet or knees to try to relax my legs, and a heated lavender wheat bag around my neck. The combination of the two is thankfully providing me with enough temporary relief to enable me to drift off to sleep. I have debated taking sleeping tablets however I am unable to do so with the medication I am currently taking.

I am hoping that by increasing the number of times I meditate a day and by starting to have reflexology done that I may start being able to sleep better. Only time will tell if this combination will help. So I shall keep my fingers crossed.

 

Twisting Limbs

On Sunday afternoon my ‘good leg’ spasmed for the first time. I choose to simply ignore this, as I was having lots of spasms and seizures as it was. Other than having the odd spasms in a toe or two yesterday, my leg and foot were fine, and I choose to completely forget about it, as I felt there was no use in getting wound up over something that may or may not cause an issue.

However I woke up this morning to the bottom half of my leg and my foot in spasm. I breathed through the spasm and tried to think of calming thoughts. Once it relaxed I once again pushed it to the back of my mind and tried to go back to sleep. However any chance of having a peaceful day was destroyed when I woke up. My step-dad had been accidentally locked himself out, so I got up to let him in. What would normally be a couple of quick hops on the crutches to the front door, took a painful minute or two. My left leg was spasming badly and I struggled to balance myself and avoid setting off a spasms in right leg.

A similar situation arose later in the day when I got up to go to the other room. I really struggled to move at all. Which sparked a great deal of panic in me. I rung my GP and left a message asking for him to call me back, I knew that he would not be able to offer much advice, however the question he asked in response to my statement about my leg was “are you able to eat?”. I now have an appointment to see him tomorrow morning, I hold little hope for this though due to his earlier comment, after all since when have I used my leg to eat?

I am trying to stay calm and have mediated several times already today, however I have not been able to relax. Part of me is worrying about how I will be able to mount when I go riding on Thursday (I am going to go no matter what and plan on medicating myself to the max) and another part of me is having a break down over the impact that this is going to have.

I have tried standing in different positions over the day and if I stand on the side of my foot then this works to a point. It enables me to hobble around a little bit but I have no idea what else do. My whole body is now completely out of my control and I cannot stand it. I do my best to try to stay positive every day and fight against the spasms, but I am beginning to feel like I have fought one battle too many and they feel like they are never-ending.

However despite all my pessimistic thoughts I refuse to give in, I will keep trying to find new ways to get around the spasms. In the mean time I shall occupy myself with hounding the NHS for some form of treatment as I’m beginning to feel like I am drowning in a sea of untreated symptoms. I do not want to spend my days in bed, I want to be out and about!

Today marks the beginning of yet another battle against my Dystonia alien.

 

Benedict, Dystonia, Rugby & Wine

This morning  pain has slowly been spreading down from my TMJ area into my jaw. I had done my best to ignore the pain, distracting myself with getting things ready for tomorrows hospital appointment (a non dystonia related one). However the lack of attention I was paying, seems to have seriously offended Benedict. To punish me, he has chosen the most painful part of me and decided to twist and pull it in as many ways as he can possibly find.

The right side of my face/lips has been pulled diagonally upwards and outwards. Consequently my right eye has been forced shut and it look like I am trying to bear half of my teeth. I must admit, if I was trying to scare someone away by bearing my teeth this spasm would do a very good job. The left half of my face/lips has been pulled diagonally downwards, and the whole of my jaw has been shoved to the left as well. I feel like my face is going to rip in two and my jaw is going to dislocate!! It is disappointing that despite having Botox not that long ago, Benedict is already able to manipulate my jaw. I have at least 4 weeks to go, if not more, before I can have any-more Botox injected.

Having Dystonia in any part of you body is a horrific thing. However now, in this moment of time, I would rather have my hand or my foot go into spasm. Whilst they are still ridiculously painful, I find them a hell of a lot easier to deal with. With the way Benedict seems to be playing with me today, I am sure that he will find some twisted way to add my wish to today’s neurological games.

I am refusing to let this spasm get the best of me though! I am going to enjoy today’s rugby match – Come on Scotland – I am going to have a nice glass of wine or Disaronno, even if I have to drink it through a straw, and I am going to relax. I am hoping that my pain medications kick in soon! Before I do anything else today I am going to meditate, as I often find this to be a very helpful way to help keep myself calm and to put off any unwelcome seizure.

 

 

My first RDA Lesson

There are no words to describe just how over-joyed I was yesterday. It was a day of sheer bliss!  Yesterday I had my first R.D.A (Riding for the disabled association) lesson. It had been 5 years since I had last ridden (when I was able-bodied), and I was desperate to get back on a horse! I must say that the volunteers who run the group are amazing! They are such caring, upbeat people and it is such a vibrant environment! You could not ask for a more helpful or nicer bunch of people.

As I am in a wheelchair, the volunteers had to be slightly inventive, as I could not mount a horse in the typical way. Instead, once I was on the mounting block, two of the volunteers lifted me by my knees, up on to the horse, so that I was sitting side-saddle. I then had to swing my Dystonic leg over the horse’s neck, so that I was sitting correctly. I was thrilled that I had managed to get on!!!! As I knew there was a very good chance that I may not be able to.

I then had 3 volunteers stay by my side throughout the lesson. So that if for some reason my dystonia played up or if I had a seizure, they would be able to keep me from hurting myself. I was expecting to only be allowed to walk in my first lesson, especially as we did not know how my leg would react. However I was in heaven, when I heard the instructor call my name and tell me to go for a trot!!!!! At first the trots were short, so that we could establish my strength, however throughout the lesson they got longer and longer. I could have cried with happiness. I have loved horses all my life, and started riding at the age of 5. Ten years later I had to stop due to injury. So you can imagine my joy at being able  to get on a horse again and then being able to do more that I expected!

I managed to do the entire lesson, which was incredible!!! To dismount from the horse, things had to get inventive again, as I was unable to do this in the typical manner. Instead I swung my leg over the horse’s neck again and sat side-saddle. Then with my arms wrapped round the volunteers, I let myself slowly slide down the horse to the ground. It was an amazing day! One that I will not ever forget. I cannot wait to go back next week for my next R.D.A lesson!

This is a picture of me riding Connie, just getting ready to dismount at the end of a fantastic lesson!

I also attended my support/research group last night. I really do love this group. It does a slight bit of meditation, free movement, discussion etc. To an onlooker, it would most likely look that we are all slightly crazy, however everything we do, I find leaves me feeling relaxed and peaceful by the end of the session. It was a perfect end to a rather heavenly day!

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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