Tag: dystonia

Posted in Archive, August 2013

Tremor and The Fantastic Effects of Reflexology

Posted on by dystoniaandme

Today my jaw tremor has returned, I’m not too pleased about this as it is earlier than I expected it to be, however I am having my Botox injections next Tuesday so it’s only one week of putting up with it. I do look rather silly as I have a baby teething dummy in my mouth to protect my teeth so that the tremor does not loosen any more of them.

I have had weekly reflexology sessions for a few months now and I cannot get over just how much of a positive effect it has on my body. My feet like to spasm in the evening and the pain in my knee and hip joints get bad, this normally means I will be lucky to get more than four hours sleep. However with reflexology I have found that I get between three and four fantastic nights of sleep, which makes a big positive impact on my energy levels during the day which enables me to handle my spasms better.

I tend to have my reflexology sessions on a monday afternoon. The night before the session my sleep is almost non-existent, I’ll spend the night strapped up to my TENS Machine, doing my meditation breathing exercises etc in an attempt to get to sleep. I have even started using rescue remedy night drops which have helped a bit. To go from almost no sleep to the next night sleeping dead to the world is the most amazing experience. If I could afford to have reflexology several times a week I would not think twice about doing so.

I rely on medication to try to suppress and manage my Dystonia. Whilst these medications are essential I would much rather not take them as it’s not good for your kidneys and your liver to be constantly bombarded with them. Therefore having an alternative to help me sleep and deal with my symptoms is such a giant relief as I was very reluctant to go back on to my sleeping medications. When you have Dystonia you are told to try to avoid stress as it can exacerbate your symptoms, now obviously it’s near impossible to lead a stress free life as Dystonia itself is rather stressful. Reflexology is so far my biggest stress reliever, I honestly do not know how I would cope without it.

I saw this quote earlier and fell in love with it, I find it rings very true.

 

Posted in Archive, August 2013

Todays Hospital Appointment.

Posted on by dystoniaandme

This morning my mother and I travelled to Warwickshire to see an Infectious Disease Specialist who supposedly (according to his secretary) treats Chronic Lyme Disease. I left the appointment with extremely mixed feelings. On one hand I was rather disappointed and on the other hand I was satisfied with what he has said he shall do.

At the start of my appointment he made it rather clear that he did not  really believe in chronic lyme and thought that ongoing lyme could be cured with a 4 week course of antibiotics. He also thought Lyme Disease could cure itself…I have not heard or read about this.  After hearing about my life medical history and an examination he informed us that he was certain that I had had Lyme Disease for a few years but did not think that I still had it. However he said that I at least deserved to have testing done. Therefore he is going to write to my GP and have my GP arrange for me to have an IGM (that may be wrong) blood test and a lumbar puncture for PCP testing to see if there is any lyme in me. Lyme disease testing is inaccurate at the best of times and the fact that I am on antibiotics for Lyme Disease at the moment means that the antibodies shall be suppressed meaning a negative result is more likely. I expressed my concerns to the doctor, who admitted this could happen. However I am very happy he is going to ask for these tests to be arranged.

He was a lovely guy, however I am unsure how I feel about it all. I am going to go ahead with the tests. If they come back negative then I shall book myself into the Breakspear hospital and go through this all again. One big positive out of this appointment is that he confirmed our suspicions that I did have Lyme. That there, in my eyes, is the reason I have Dystonia. My neurologist admitted that they know that Lyme disease can cause Dystonia. It gives me some peace of mind to know that there is a reason behind it all. Now I just have to wait for the NHS to arrange these tests.

Today was just a slightly wobbly stepping stone to future treatment. One way or another I will get to where I need to be.

Posted in Archive, August 2013

ATOS appointment & Upcoming Specialist appointment

Posted on by dystoniaandme

Yesterday I had an appointment with ATOS to prove to them that I am disabled and to discuss/show them how much Dystonia affects me. After some horrific telephone conversations with them, which I am making a formal complaint about, and from reading some dreadful news articles about them, I expected the appointment to be awful. I had mentally prepared myself to meet a rude practitioner who was not prepared to listen. I was therefore pleasantly surprised by the lady who saw me. She came across as if she really did want to help me.

Now I don’t remember much of the appointment due to a few seizures I had whilst I was there but the bits that I do recall and the parts that my mother has informed me of paint a picture that goes in my favour. Upon arrival my feet were already in spasm due to the cold outside, then the lights set my eye spasms off, and some head movements I was asked to do set my head tremor off. The physical assessment side of the appointment was stopped early as the Doctor thought it would be unsafe to carry on with it. Therefore only the verbal information my mother and I gave her (which she typed up)  was complete. I left her with copies of two letters from my consultant as well. After everything she saw I do not believe she could write anything against me.  However I am still hovering on the side of caution until I receive the report.

This coming Saturday I have an appointment with an Infectious Disease specialist who has an interest in Lyme disease. I am rather excited and nervous for this appointment, as hopefully a treatment plan shall be discussed/put in place. I have had many conversations with his lovely secretary who has been extremely informative, understanding, helpful and has helped me trust I have made the right decision choosing this Doctor. I am trying not to get my hopes too high incase the appointment does not reach my expectations, however I am still very excited. I have prepared a list of questions to ask in the appointment so I know exactly where I stand and what treatment options are available to be.

I look forward to Saturdays appointment revealing my next steps!

 

Posted in Archive, August 2013

ATOS appointment & Upcoming Specialist appointment

Posted on by dystoniaandme

Yesterday I had an appointment with ATOS to prove to them that I am disabled and to discuss/show them how much Dystonia affects me. After some horrific telephone conversations with them, which I am making a formal complaint about, and from reading some dreadful news articles about them, I expected the appointment to be awful. I had mentally prepared myself to meet a rude practitioner who was not prepared to listen. I was therefore pleasantly surprised by the lady who saw me. She came across as if she really did want to help me.

Now I don’t remember much of the appointment due to a few seizures I had whilst I was there but the bits that I do recall and the parts that my mother has informed me of paint a picture that goes in my favour. Upon arrival my feet were already in spasm due to the cold outside, then the lights set my eye spasms off, and some head movements I was asked to do set my head tremor off. The physical assessment side of the appointment was stopped early as the Doctor thought it would be unsafe to carry on with it. Therefore only the verbal information my mother and I gave her (which she typed up)  was complete. I left her with copies of two letters from my consultant as well. After everything she saw I do not believe she could write anything against me.  However I am still hovering on the side of caution until I receive the report.

This coming Saturday I have an appointment with an Infectious Disease specialist who has an interest in Lyme disease. I am rather excited and nervous for this appointment, as hopefully a treatment plan shall be discussed/put in place. I have had many conversations with his lovely secretary who has been extremely informative, understanding, helpful and has helped me trust I have made the right decision choosing this Doctor. I am trying not to get my hopes too high incase the appointment does not reach my expectations, however I am still very excited. I have prepared a list of questions to ask in the appointment so I know exactly where I stand and what treatment options are available to be.

I look forward to Saturdays appointment revealing my next steps!

 

Posted in Archive, August 2013

Taking back control

Posted on by dystoniaandme

As you will know from my previous blog post a couple of days ago I was withdrawn from university after being on sick leave for a year because of my Dystonia. I had a few days of “why me” and “I want to go back to placement” before I actually sat down and thought this is not the end of the world, I refuse to do nothing, what can I realistically do now.  So I had a look at my local colleges and what they offered, to see if I could find anything that interests me. I had been toying with the idea of going into reflexology for a while now and discovered that one of the colleges near me offers it. As my hands are behaving very well at the moment, I have taken a leap of faith and applied for the course. I am waiting to hear now if I have an interview or not. Not only will I be able to study if I get place but it will be a great chance for me to meet new people.

On holiday we discovered that my ability to go out and about had grown, so I was able to do much more than I was used to. Since coming home I have made a conscious effort to try to maintain this new tolerance level. I have managed to come through and spend some time in the living room and eat with my family in the dining room etc often, which is a huge improvement to before where I spent the majority of my time in my room. I even made it to Church today.

I have reached a point now where I am finishing a chapter and starting a new one so to speak. I have spent the last year hoping that some cure would magically be found and that this september I would be back at uni. Now that the reality has hit, I am closing that chapter an opening a new one that is full of possibilities. Maybe I shall get on to this reflexology course, maybe I won’t, who knows where I will end up.

Dystonia has been controlling my life now for long enough. I acknowledge that it’s always going to be apart of me, but I control my own life and I’m taking back the reins. I just need to know my body’s boundaries and respect them, so that I can start living my life again.

 

Posted in Archive, August 2013

Harsh Reality

Posted on by dystoniaandme

September 2011 I started at Anglia Ruskin University in Chelmsford on a Midwifery degree. It was the most amazing experience of my life. July 24th 2012 I developed Oromandibular Dystonia and was put on intermission for a year. Today I was withdrawn from university on debilitating health grounds. You have no idea how much I wish to pull my little Dystonia alien out and scream at him.

My university was extremely kind about it all and I hope that in a few years time if I am well enough that I can reapply to do my Midwifery degree. In the meantime I plan on doing a Level 3 in Anatomy and physiology, and once I’ve finished that I will see where I  go from there. I have known for a few weeks that this conversation with my uni would have to happen, and have dreaded it. I had hoped that as I knew it would happen that it would not be too bad however the reality is that I am extremely upset and want to scream at the doctors until they invent a cure.

I struggle to understand how it is ok for Dystonia to upturn, stomp all over and turn inside out our lives. I struggle to comprehend why sufferers then have to fight for treatment and care. I struggle to accept the reality I’m living. I won’t ever accept it, because none of this is ok. I know one day a cure will be found and I hope it shall be in this lifetime so that I can reapply for uni.

On a brighter note my body is not too bad today which is nice and a DVD called The Host which I have excitedly been  waiting for has arrived – It is a fantastic book and an amazing film. I plan on doing nothing for the rest of the day other the watch The Host again (even though I only finished watching it ten mins ago), and then I am going to indulge myself in a bit of 50 shades freed as it’s an easy read.

Tomorrow will seem brighter, and I will get there eventually, one way or another.

Posted in September

Return from Holiday and Sensory tricks

Posted on by dystoniaandme

I am now back from a fantastic and relaxing holiday in the Cotswolds with my family. I think it did all of the us the world of good to get away for a little while. I was shocked and over the moon that I managed to go out everyday and did not have a full body melt down with a handful of seizures thrown in until the Thursday!! We went to a number of places which were more wheelchair friendly than I expected which was amazing, my favourite being Warwick Castle where we watched the jousting.

The week before we went away I saw my reflexologist twice to try to prolong the effects the reflexology has. I am extremely glad I did this as it meant that I slept well until the Wednesday when my body reverted back to its ‘i’ll keep you up till 3am’ normality. My reflexologist is away for a week or so now and I am really looking forward to her return so that I can have some spasm/pain-free nights again. I am now counting down to the 27th when I go to see my neurologist for my injections. It thrills me to know that with them being done so often the pain I normally endure for weeks shall now be almost nonexistent.

Whilst on holiday my eyes went blind several times due to the spasms. Normally this causes seizures, and a few times it did, however I again tried doing sensory tricks to my eyes to see if they would make a difference and for once I seem to have found one that works for me! It only works on the spasm that pulls my eyeball upwards so that only the whites of my eyes are seen. I have found that by putting pressure on my eyes and moving my hands in a downward motion a few times that it encourages the spasm to release. I could have danced with joy when I found this worked as it should reduce my seizures!

I am feeling extremely positive at the moment, and very relaxed after a wonderful holiday. I may not be in control but I am coping and finding ways around my little Dystonia alien. Just got to take it one day at a time.

Posted in Archive, July 2013

Retail Therapy and Reflexology

Posted on by dystoniaandme

Today has been utterly heavenly! As we are going on holiday on Sunday I went shopping with my sister, mum and a family friend to get some last-minute summer clothes as I didn’t really have any. It was nice to out in such nice weather and for a change trying on clothes was great as I was able to go down a size in both tops and bottoms which really made my day.

I bought the basic tops, leggings and shoes I needed, and treated myself to a beautiful summer dress that I am in love with. It was a fantastic day out, and whilst it left me exhausted it also put in the holiday spirit. Going out always takes it out of me and after trying on so many clothes and being out for hours I was so tired that I fell asleep on the drive back home.

I normally see my reflexologist on a monday, however as we are going away on sunday I decided to see her today as well so that I will hopefully be able to stretch out the benefit I get from it over the majority of the holiday. It still amazes me just how well reflexology works for me. I get several nights of good sleep out of it which leaves me with more energy to tackle my Dystonia with during the day.

I am so excited to go away!

Imagemy fab holiday shoes.

 

Posted in Archive, July 2013

Summer, Spasms, Stories -I need your help!

Posted on by dystoniaandme

In the winter I quickly discovered that cold weather and Dystonia do not mix, my body spasmed constantly and I had to leave the house with several layers on and a hot water bottle or two! I never worried about how the heat may affect my Dystonia, and if our weather had stayed typically British then I am sure my spasms would have stayed to their ‘normal’ rate.

Now don’t get me wrong I love the fact we have had a lovely stretch of untypical heat, which in turn has led to BBQ’s, evenings in the garden etc, however I don’t love that it is sending my feet and legs barmy. I get through the day but by the evening I want to beg my feet to uncurl. In desperation I bought a desktop fan for my room to help me at night, which is so far working a treat. It has been a delight though to see the blue skies and watch birds on the bushes outside my bedroom window. Summer always brings a little uplift in mood for me which is fantastic.

My Botox is definitely kicking in now and I have barely any pain thanks to the spasms disappearing. I have some pain in my TMJ‘s (your jaw joints) but this is nothing in comparison to what I was in. It is amazing how much of an impact these injections can have and I feel very lucky that I respond well to them.

Thanks to the permission of some amazing people I have compiled a letter for the Health Secretary containing the different stories of people with Dystonia and their struggles for help. The Health Secretary told me he could not deal with just one case so I decided to compile these stories and open his eyes to the struggles we go through to receive treatment! Whilst I recognise some people have had fantastic service from the medical society, so many people have not and their voices need to be heard.

If you would like to help me open up the government and the NHS/private doctors eyes and try to get more help for us sufferers then please contact me with your story at either  dystoniandme@hotmail.co.uk or here https://www.facebook.com/dystoniajourney .

 

Posted in Archive, July 2013

The Many Wonders Of The Brain

Posted on by dystoniaandme

The human body is an amazing thing, it is a complicated being that relies completely on the brain to be able to function.However if there is one tiny glitch in the brain then dramatic abnormal changes occur. I am completely fascinated by my brain, I would love to have electrodes on my head for a few days to monitor it, so I could get a glimpse of what my brain is doing wrong.

Take yesterday for example, I don’t remember the day at all, but my mum found me unconscious  due to my Non Epileptic Seizures in a chair, where I remained unconscious for a few more hours. My poor mum had to spend five hours in my room looking after me. Due to my lack of memory we have no clue what exactly caused me to started having seizures, when I came round I apparently complained about my knee a lot, however my knee other than being a bit bruised is fine today. It is times like this that I would just love to know what exactly is going on in my brain. Whilst Dystonia is extremely painful it is also utterly fascinating.

I consider myself to my extremely lucky that Dystonia is not fatal. I may moan and complain about living with it, but in comparison to so many other people on this planet I am considerably better off. I simply have a misbehaving alien bouncing around my brain pulling strings to make different parts of my body react or knock me out.

On the 28th of this month, I am going away to the Cotswolds with my family. I am extremely excited as I have not been on holiday in a few years. Even though my spasming body will still be with us it will be fantastic to have a change of scenery. I plan on relaxing, taking lots of photos and enjoying every single second of our holiday. I am now on a countdown to the 28th!

This week my blog has received well over a thousand views! I would like to say a humongous thank-you to everybody who is reading it. I hope it is raising awareness and helping others!