Tag: Neurological Disorders

Posted in Archive, November 2013

Unpredictable but Not Alone.

Posted on by dystoniaandme

“Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person’s symptoms can vary from one day to another“, NHS Choices. This quote sums up Dystonia quite nice and simply I think. It is extremely unpredictable, which makes it hard to work out what you are capable of doing one day to the next, if you guess wrong the games over for the day. In my case guessing wrong would result in me putting my spasming body to bed and hoping that a long nap will help calm my symptoms down…but thats providing the spasms don’t stop me from getting to sleep. I always try to make the most out of each day, to accomplish as much as I can incase the next day results in being unable to move from my bed. However trying this can often backfire on me and ensures that I spend the next day in bed, but sometimes if I’m really lucky I get away with it for a day or two. These are the days I love, as on these days I am beating my Dystonia – not permanently, but even an hour of winning is a huge achievement.

Dystonia symptoms and it’s impact varies from person to person. A quick glance at the Dystonia Society’s list of type of Dystonia and their symptoms gives you an idea of just how wide a range http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia . Due to this it does not surprise me that Doctors understand so little about the condition, why patients have little choice but to fight tooth and nail to find a treatment that works for them, to find a doctor who will listen. Through the power of the internet I have slowly got in touch with more and more sufferers, and even a handful of curious doctors. The sufferers amaze me. I hear the stories, and count myself lucky that I have a good support network, something many do not have. We all band together to raise our voices to get Dystonia out there, and it’s working. Slowly but it’s working. The emails I get from Doctors around the world prove that.

Yesterday at Choir we were practicing Christmas songs, which got me thinking of all the things I was thankful for. As much as I wish nobody had to suffer from this hideous condition, I am so extremely thankful that there are others out there. That those of us lucky to have found each other can support one another, give advice and a listening ear. Without being in contact with these amazing people, I honestly wonder how I would cope. I am also thankful to those of you who read this blog, and often share it with others. Since becoming ill I have become determined to become an advocate for Dystonia, to make my voice heard, and bring awareness to the condition and what it is like to live with it. Looking at the comments you lovely people leave me, the shares, likes and statistics  brings me such happiness, as it shows me just how far my voice is being heard and assures me I am on the right path.

On one last note, I promised a while ago to upload photos of the amazing women who raised money to buy me a bath lift. I have attached them underneath. I feel incredibly lucky to have met such generous and caring women.

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Posted in Archive, September 2013

Basking in Positivity

Posted on by dystoniaandme

The last few days have been truly fabulous! I got into college to study a Level 3 diploma in reflexology, had a meeting with the learning support team who were completely wonderful about my Dystonia, and today I have been out for lunch with two of my best friends who I had lived with at uni.

My course starts in just under two weeks, and at first will be only be for 3 hours one evening a week and then progressing to each saturday as well when we start working on clients. It is nice to have found something I can be passionate about and to study towards. Being able to study Reflexology is also rather reassuring as I can go on to work from home. I have spent months thinking I would never have a carer, but since taking the antibiotics which have calmed down my Lyme symptoms, I feel empowered and full of hope.

I was thrilled to go out to lunch with my friends this afternoon. Having lived with them at uni, I miss them a lot. I got a taxi up with one of them to the Beefeater, which was a good experience. Normally my mother or a family friend takes me if I’m going  out somewhere, so it has given me confidence knowing that I am able use a taxi service with ease. I felt like a ‘normal’ person and did not feel extremely conscious  like I normally do when in a restaurant.

Having everything go right the last few weeks and has been amazing, I have not had to fight to get what I’m after, which has been a nice change. I feel extremely relaxed. My little Dystonia alien is by no means letting me forget he is there, but I’m giving him no attention and basking in the positivity that is filling my life currently.

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Posted in Archive, August 2013

Amazing Consultant Appointment

Posted on by dystoniaandme

Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.

He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.

I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.

I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.

Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.

 

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!

 

Posted in Archive, March 2013

Illness and Inspiration

Posted on by dystoniaandme

Over the last week I have not been well. My seizures have increased to the point that one night I seized from 12am till 6am, my body was spasming constantly and I was feeling really under the weather. The last three days I have had a temperature along with a sickness bug, so have spent the days in bed resting. As I have mentioned before Dystonia does not respond well when the body has an infection/bug, for me this means it acts up a lot. I have put this last week of bad spasms and seizures down to my body fighting off the bug and then succumbing to it.

Today whilst reading through some material on the Dystonia Society’s website I came across a section on Dystonic Storms/attacks and it has really got me wondering if my ‘new’ Non Epileptic Seizures are actually not Non Epileptic attacks and Dystonic Storms instead. In my ‘new’ type of seizures I am completely conscious  however I am unable to communicate verbally, sometimes I may be able to do this via twitching a finger or blinking my eyelids, other times I am unable to communicate in any form, which is terrifying! The Dystonia Society describe Dystonic Storms as :

“episodes of a rare condition called status dystonicus where people develop frequent and intense episodes of severe generalised dystonia. A single episode of this severe dystonia may be referred to as a ‘ Dystonic storm’ or ‘ Dystonic attack’. They usually occur in individuals who already have dystonia affecting a lot of the body…During an attack people do not lose consciousness  and are completely aware of their surroundings but they may not be able to communicate to others as the muscles of the face and larynx are often involved. “

Naturally when I next see my consultant – which shall hopefully be soon – I shall put this to him and get his thoughts on the matter. – if you would like to read more on Dystonic Storms or Dystonia in general then please visit the Dystonia Society’s website http://www.dystonia.org.uk/index.php .

I found this picture earlier on today and it inspired me.

I am not going to have a perfect day everyday, and some days I am going to struggle to find the silver lining. However something good happens everyday, it may a day from hell, but if I woken up that day and I am alive, well that is fantastic and I am going to be grateful for it. There is no point in dwelling on the negatives in life.

So I am going to ignore my spasms and seizures, force my spasming face into a smile and carry on.

Posted in Archive, February

Benedict’s revenge

Posted on by dystoniaandme

I have had a rather busy and sociable week. It has been completely brilliant and was a slight taste of ‘normality’ for me. Normality and independence are something that I desperately cling to, as I refuse to give in to Benedict’s attempts to seize control and conquer my body. However, when you have Dystonia a busy day is enough to exhaust you, so a busy week was perhaps a step to far. I still think this week was so worth the last few days of Dystonic  antics though!

Benedict, my little unwelcome Dystonia alien, decided to start playing up on Friday night. My right hand/arm had gone into a spasm, and started to tremor, my head also had a tremor going on that looked like I was shaking my head to say no very fast, and my back decided to bend backwards, in an attempt to fold me in half. As you can imagine this was extremely painful and rather distressing.

Then last night my leg decided to spasm. Now normally I can just about control my emotions when my Dystonia plays up. Usually it is only a few choice colourful words that escape beyond my spasming lips. However this particular leg spasm was agony, and had me in floods of tears due to the pain. Then my arm decided to join in. By this point I was extremely upset, and rather angry at myself for giving in and letting out my emotional response to the spasm. Yet they do say that a cry now and then is healthy, so perhaps I actually did myself a favour.

Today was also eventful. Even though the day was relaxed, we just sat quietly at home, as my grandparents and my man were visiting, my body still deemed it necessary to act up. I can only presume that the many activities I have done this week had triggered the hideous spasms I have experienced over the last 48-72 hours. I woke up at 5:30 am this morning to my arm spasming and my head doing its no no tremor. Then my leg put up a big fuss when I attempted to get dressed. Through-out today my arm/hand has been having spasms and tremors often and violently. At one point I honestly though that if the spasm carried on for much longer then my shoulder would end up dislocated – thankfully it eventually ceased. At other moments in time the tremor in my arm was so violent that I ended up hitting me sister.

I have currently given in to the spasms and pain, and retreated to the quietness of my room. However I have not come here to dwell on the problematic issues that Dystonia causes. I have returned to my room, to relish in the memories of the week, to mentally high five myself for the accomplishments I have made and to look forward to the days ahead. I cannot wait for tomorrow afternoon to have a consultation with a personal trainer that I hope to work with. The beauty of having Dystonia is that you know that even on bad days that things can only get better! There is so much to look forward to!!!!

Posted in Archive, February

It is just the beginning…

Posted on by dystoniaandme

I found this picture earlier on today, and felt that it would be appropriate to share it with you all. Yesterday I was rather down in the dumps due to having a bug for a few days and my Dystonia was playing up big time, then I got emotional about all the changes it had made to my life. This picture really got me thinking about the situation I have found myself in.

Dystonia is life changing! I am just at the beginning of a life long road and it is going to take time to adjust to everything. However just because parts of my life are no longer the same does not mean that it is all over and that it is time to give up. I need to recognise and accept that I am going to have down days now and then, where I grieve for the parts of my life I have no longer have. Yet at the same time I need to recognise the amazing things that have happened to me since the Dystonia hit me, such as the people I am in touch with, going back to riding, etc. If I did not have Dystonia then I would not have set myself a new life goal, I would never have even thought about aiming to compete at the Paralympics, but now that is something I strive to do.

It is going to be a long journey, and the beginning is always the hardest part, but you never know what is waiting for you round the corner. You only live once, you need to make the most of what you have!

 

Posted in Archive, February

Blunt, Honest, Emotion.

Posted on by dystoniaandme

When I started this blog, one of my many aims was to bring light to the suffering Dystonia causes by being as open and honest as possible.

On days like today when I am tired, ill, in pain and really emotional, I cannot deal with Dystonia!! I hate it! I am angry! I am fed up! I am so physically and emotionally drained from dealing with it and I don’t want to deal with it any

 

Posted in Archive, January

Staying Strong!

Posted on by dystoniaandme

I saw this photo/quote, and felt like I should share it with you all.

I, personally, find its words to ring true. As much as we wish life was perfect, nobody’s life is. Everyone has their own struggles in life, be it financial, domestic, illness, loss etc. At some point in life we will ask ourselves, why me?! Why am I having to go through this, I can’t deal with it! If you have not asked yourself this yet, then I am sorry to inform you that eventually you will. However when it comes to that point in time, when you are asking why me? That is when you must remember that if you were not strong enough to deal with it, then you would not be going through it. The experience may make you feel like it will never get better, and that is the moment you must remember that it will get better and that whatever you have had to struggle through, will make you a better and even stronger person at the end of it.

I have asked myself, why me, so many times recently. The question normally arises when I am going through a particularly bad spasm or am in a lot of pain. However, each time the pain stops and I relax, I can think more clearly, and I know that I would much rather go through this than see a member of my family, or anyone else go through it. I know that I am strong enough to deal with it and that’s why it is me who has Dystonia.

It is up to us to make the best out of a bad situation. For me, I have decided that instead of curling up in a ball and letting myself become a ‘sufferer’, I shall instead be an advocate for the condition. I shall try my best to make a difference! You never know, I might!

So if you ever are thinking, Why me?! Remember the above quote and know that if you were not strong enough for this life, you would not have been given it!

 

Posted in Archive, november

Take The Good With The Bad

Posted on by dystoniaandme

There is currently an advert on the T.V (I can’t remember which one it is, it looks like a Christmas one) that has a line in it that I love, ‘Take the good with the bad’.  This is so true, everyone goes through good and bad experiences in life, and at the end of the day, it is up to them what they choose to take from that experience.

Dystonia is not what I would call a good experience, to be rather honest it sucks and I would rather not have it, however this does not mean that I won’t take something positive from the experience. For example, because of Dystonia I did a charity run and raised £715 for the Dystonia society. Instead of focusing on all the negatives that Dystonia causes, I make myself think about the positives, such as I managed to wrap all the Christmas presents I had brought one-handed and they looked better than normal, I even wrote my Christmas cards with my left hand!

I understand that sometimes it can be hard to focus on the positives when you are in the midst of a bad time. However I think that forcing yourself to focus on the positives is the best thing you can do, it gives you a distraction from the negative. There is no point in sitting around wallowing, when you can be thinking of the positives; such as your personal achievements, and trying to figure out how you can make something good out of the experience.