Tag: pain

Posted in Archive, January

Crash Landing

Posted on by dystoniaandme

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.

Posted in Archive, January

Consultant News and Meditation.

Posted on by dystoniaandme

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

Today’s Support/Research Group and Dystonia Update

Posted on by dystoniaandme

This evening I went to a group that my GP signed me up for. It is designed for people with chronic pain symptoms, to help give them coping mechanisms that they can learn to use in daily life. The group is also for research so we were asked to answer questions, and give them our life and medical history, so that they can compare the results the group gets at the end of the 12 sessions to the answers provided at the beginning.

At the start, I must admit I was a bit dubious about the group, the leader seemed a bit mad, and everyone there was a fair bit older than me. I was also concerned with how much I would be able to take part in, as I am in wheelchair. However by the end of tonight’s session my concerns were long gone. I had managed to take part in everything, when they did walking activities, I copied their upper body movements, and swayed about in the chair. The other people their were lovely and I have a good giggle with them all. We also focused on our posture and did breathing exercises which I found to be very relaxing. The two hours flew by, and I cannot wait for the next session!

Today has been a rather positive day. After six hours of calling, I finally managed to get hold of my Consultants Secretary, who has promised to chase him, and have him contact me ASAP, I am hopeful that he will, but I shall just have to wait and see. I have had no Non Epileptic Seizures at all today which is fantastic and my head and body are feeling much better.

My local Riding for the Disabled stable phoned me today, and as long as my Non Epileptic Seizures stay calm, then I shall hopefully have my first RDA lesson next week! I am rather excited!

Posted in Archive, January

The Battle Against My Neurological Demons!

Posted on by dystoniaandme

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 Archive, January

Emergency Hospital Trip

Posted on by dystoniaandme

Yesterday  was an extremely odd day. To be honest I remember  nothing of it! Apparently as I was mixing up my medicine in the kitchen, I collapsed and fell on to our tiled floor and then went on to have a hell of a lot of Non Epileptic Seizures along with extreme Jaw spasms, with mere seconds of consciousness between each one. Due to the fact I really hit my head and arm hard when I collapsed, I was rushed off to hospital in an ambulance. Whilst at the hospital I was monitored for hours and had my hip x-rayed (thank-fully I had not broken it). It was while we were at the hospital that my mother noticed that I was also having Non Epileptic seizures which weren’t taking on their usual form. I was staring blankly, and not responding when my mum spoke to me or when she waved her hands in front of my face. This is slightly concerning as it means that I may be having more Non Epileptic Seizure than we are aware of.

Today I have woken up feeling like I have been run over repeatedly by a truck. I am therefore spending the day medicated to the max, and in bed. The thought of moving is not one I welcome. This incident has given me yet another issue to talk to my consultant about as it is getting beyond ridiculous now.On the bright side of things, whilst my Jaw Dystonia is still playing up, it is not to bad today, which is a relief.

Posted in Archive, December

Musings on my Dystonia and the NHS

Posted on by dystoniaandme

Today is one of those days where I find myself  thinking about everything. The other day I had to inform my university that I would not be able to return to my midwifery training because of my Dystonia. I still have to speak to them a bit more about it in the next few days. Yet sitting here right now, my body is completely behaving, I feel normal. I feel like I am able to just get up and walk about and do what ever I want. Part of me even dares to say you’re fine. However I know I am not fine, yesterday evening I went blind three times, my jaw was in spasm and my body was very jerky. I know that the reality is that I am not fine or ‘normal’, but my body at this very moment in time feels like I am.

A large part of me wants to just get up and walk about and see what happens, I know that there is a huge chance that my right leg shall immediately play up and I will end up on the floor, but then again if I don’t try these sort of things out, how will I ever know what I can and cannot do, or what progress I may have made.

My consultant, when I first met him, gave me the impression he was wonderful and would fix me. The reality of it has finally sunk in, unless you’re sitting in front of a consultant or doctor the chances are that unless you fight them they will do bugger all for you. The way I see it right now is that I have two choices, I could spend my days feeling sorry for myself and waiting until October/ November next year to get treatment or I could start pushing my body a little bit further everyday and start trying to retrain my brain myself.

Over the last few weeks I have tried to push myself, so far it has been successful 98% of the time. I can now use my right hand to hold a spoon, I can stand with my right foot flat for about a minute or two which is a huge step. I am making what I think are huge positive step forwards and that is without the help of doctors or consultants, the people who should be helping me! I have also noticed that I tend to go blind when I feel like my eyes are straining, the obvious solution to this in my mind, is to go to the options and get some new glasses, so my eyes don’t have to strain so much, after all there is no harm in trying and it may stop the blindness.

What irritates me the most is that I am having to struggle through this and try to figure out how to beat Dystonia with very little help from the medical profession. They are the people who should be giving me ideas of how to help myself, or new things to try etc, yet their not doing any of this, I am lucky if they even return my calls or emails. The care the NHS provides shocks me constantly, I feel completely abandoned by them. However I will  not settle for this level of care. I plan on doing my best to bringing attention to the failings of the NHS system.

 

Posted in Archive, December

Happy Days

Posted on by dystoniaandme

The last few days have been full of positivity! Which has put a smile back on my face. The other day I paid my local riding stable a visit. Once a week for a couple of hours they run lessons for the disabled. They assessed me whilst I was there and have said that after Christmas I can join! I was of course extremely excited. I then watched one of the RDA lessons, so I could get a feel for how the lessons were run, I had a smile across my face the whole time. I love horse riding! The only issue that the instructors can see at the moment, is getting me on the horse without my leg going into spasm, however they have thought of a couple of different ways to get on me. Personally I’m hoping that my sheer determination to back on a horse will enable me to do it perfectly :p.

Yesterday my jaw spasm relaxed partially!!! It had relaxed enough for me to eat solid food and talk more clearly, only my lip remained odd. In the evening I had my usual extreme Jaw spasms and seizures, which had worried me that I would wake up today with my jaw back in spasm, but I need not have worried, today it is still relaxed. I could dance with happiness!

 

Posted in Archive, november

Today’s Thoughts

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My jaw is still in spasm, which is really rather painful. However on the positive side of things, my medication, has really helped and my spasms in my right arm and leg have not been that bad these last few days. The pain in jaw can get rather intense and this tends to cause me to have a Non Epileptic Seizure. I am getting better at identifying when I am going to have a seizure. This means that I am able to inform someone, like my mother, seconds beforehand. This is a huge step and a big positive, as it means that whoever is with me, can try to prevent me from injuring myself during in a seizure. I am hoping that I will hear from the consultant soon, so I can get treatment for my jaw, which in turn should hopefully mean that my seizures will disappear again.

The path my life has taken, at this moment in time, is not one I would have chosen for myself. You would have to be fairly crazy to want to have Dystonia. However I accept that for now Dystonia is part of me, and I cannot magically make it disappear. Dystonia is one of those conditions that on some days is fine and does not play up that much, on other days, it is a gigantic pain.

I am so thankful to my family, friends, and all the many people who contact me to support me. They are all amazing and help me stay strong on my bad days. They help me laugh my way through the spasms, and make sure I don’t hurt myself to much during my seizures. I really don’t know how I would have coped with Dystonia without all these wonderful people in my life!

Posted in Archive, november

Jaw Spasms

Posted on by dystoniaandme

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.

 

Posted in Archive, november

Experiment!

Posted on by dystoniaandme

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 🙂