Posted in Archive, January 2014

The Wonders of Medication

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It is amazing how well controlled Dystonia can be when you have the right combination of medications in you – for me Botox is the best thing, followed by a lot of Gabapentin! A year ago, I would have had a hideous amount of seizures due to jaw pain and would have struggled to eat, drink and talk. Now with regular Botox and other medications I am constantly my normal motor mouth self.

Everyone with Dystonia reacts to medications differently,for example I know many people find Clonazepam helpful but it causes me to become psychotic. Yet there is no one medication for Dystonia which makes treating it and getting it under control extremely hard. I am very lucky to see an excellent neurologist who is willing to inject me with Botox every six weeks, if he stuck to the usual every 12 weeks I would not be able to do half the things I now can.

On Monday I saw my GP to discuss IV treatment for Chronic Neurological Lyme Disease. I have been on oral antibiotics for around 8 months now and have had significant improvement in the areas affected by Lyme. After months of both myself and my neurologist asking him to set up IV treatment he has finally agreed to write to a couple of the local hospitals and see if they will treat me! This is fantastic progress.

My little Dystonia alien is all full of Botox and docile at the moment. I have been off my main painkillers for a few weeks and I have not had any bad pain episodes yet *touch wood*. I have also managed to come off one of my muscle relaxants, this is great as everything seems clearer and I feel like my memory has improved. As much as I do not like pickling my liver with all my medications I’d be lost without them. I am hoping that this stage of feeling like my Dystonia is ‘contained’ and ‘controlled’ continues, but nothing is ever certain in life especially with Dystonia, so I am focusing on enjoying every little thing each day.

Posted in Archive, October 2013

Generosity, Kindness & Fundraising

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Several weeks ago, I had the chance to meet some fantastic women at a fundraising event where I gave a talk about Dystonia and life with it. Two of the women – Beth and Sheila – decided to do some of their own fundraising to enable me to get a special bath lift with chest and pelvis harness.

On Saturday I went over to the last event to meet 12 amazing women, who I must say are impressively creative. The had raised an incredible amount of money which will mean I can now have baths and showers safely. In the summer when we went away thanks to a downstairs wheelchair accessible shower as I was able to shower for the first time in a year, and I have been really missing that since.

It is amazing the mental boost a shower or bath can give you. Obviously being clean gives you a boost, but the natural pain relief and relaxing element of hot water is such a fantastic way to get alternative relief to pain.  Currently I use a basin of water, some lovely lavender body wash and a sponge, and whilst I know that I am clean it is not the same cleanliness feeling that a bath or shower gives you. I am so excited to be able to bathe/shower again!

Once I figure out how to get the photos off my phone I shall upload some photos from Saturday. These women were so generous and I feel so privileged to have gotten the chance to meet them!  This is one of those moments when in a way I am glad I am ill as I would have never met such kind wonderful people otherwise.

 

Posted in Archive, August 2013

Taking back control

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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, July 2013

Life Is What You Make it

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When I first got ill last summer I thought it was the end of the world, life as I knew it was over. What I should have thought is that my life is a bit like a snow globe and someone simply tipped  it upside down and gave it a good shake and that eventually everything would settle into the right place. Now it may have taken a while but everything is beginning to settle for example why I still hate Dystonia and battle against it, I also embrace the opportunity it gives me to make a difference.

This last week has been extremely busy. Something I am not used to and left me feeling exhausted and wiped out yesterday. I was also overjoyed. I had been busy, and not just in lots of hospital appointments kind of way but in a social interactive enjoyment filled way. It’s like a distorted mirror image of what my life was like previously and you know what I am happy with it!

I may moan that I don’t like what Dystonia does and that I hate the lack of control I have, but at the end of the day I am happy. Compared to a lot of people I have an amazing life. I am surrounded by loving people all wanting to help me, and I am so thankful for them.

This morning I had a fantastic long catch up with a good friend from school who I had not seen in awhile. It was great and it felt just like old times. This evening a lovely friend I lived with at uni is coming round for a cheeky chinese. I am able to be sociable and have a social life, and I am embracing every second of it. I have even started dating, something I thought would not happen for years.

I am doing things I thought I would never do again, that Dystonia had ruined. Now I realise Dystonia never ruined anything, it restricted me and all I needed to do was find the courage in myself to fight back and find ways to get my life back on track.

My life is my own, no matter how much my little alien tries to interfere, it is mine and mine alone.

 

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Posted in Archive, May 2013

Oromandibular Dystonia is Back

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Today has been one of those days where I wish I could have slept through it. My jaw has been trying to spasm for about a week and today I woke up with it in a full-blown crazily painful spasm. I manage to deal with most of my other spasms fairly well, however due to the amount of pain my jaw causes I find these spasms very difficult and exhausting.

I always try to carry on with my day as normal when my jaw spasms as I do not like to give in to the pain, however today has felt like a real struggle. On top of this my body in general has acted up today, with my eyes being the worst resulting in several prolonged periods of functional blindness due to either my eyelids clamping shut or my eyes spasming upwards in their sockets. Despite this however, I still did all my workouts which I am very happy about!

I saw this quote earlier and it made me realise that on days when the pain is too much and I am exhausted, it is ok to get upset/cross or sleep through it because you don’t have to be strong 100% of the time, you just have to pick yourself up and brush yourself off afterwards.

Even though it is still several more weeks until I can have any more Botox treatment done to my jaw and neck, I am still going to let my consultant know so that he can book me in for my next lot of treatment. I am hoping that tomorrow my body gives me a little bit of a break, so that I can feel a bit more alive than I have felt today.

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Posted in Archive, May 2013

Struggles develop strength!

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I have recently noticed that in life we underestimate our own strength and the strength of others. If you had told me two years ago that I was going to rely on a wheelchair, have seizures and suffer from agonising spasms every day, I would have told you that there was no way on earth I could deal with that. I also would have been terrified about the impact it would have on my family, my mum works full-time and studies for a degree, my step dad works full-time, my youngest sister is about to start her GCSE’s, my brother is just about to do his last GCSE’s exams and my other sister is just about to start her last A level exams, none of them would need me causing problems.

However now we are living that reality and strangely we are managing to cope. It is extremely hard and some days I have no idea how we are managing to deal with it all, but at the end of the day it does not matter how we are dealing with it, the fact that we are somehow coping is all that matters. I often feel like we are treading water and that at any minute something could go wrong, but it doesn’t.  Yes we have the odd incidence that knocks us back but as a family we support one another and that is what keeps us afloat.

There have been many evenings where my youngest sister, who is 14, has sat on my bed supporting my head and making sure that I don’t hurt myself while I seize or spasm. This sometimes upsets me because my 14-year-old sister should not be taking care of me, I should be taking care of her! Yet she is amazing and has the strength to do this, and she makes me laugh when ever I regain consciousness. My other sister and my brother have both also helped me on countless occasions. They are 16 and 18, again I want to look after them, however that’s not the reality right now.

The strength of my family amazes me everyday. Take this morning for example, I spent an hour and a half seizing and spasming on the kitchen floor, my mum also spent that time on the floor making sure I didn’t hurt myself. The rest of my family helped out, and then went around their own business like it was completely normal. I am so happy that incidences like this can be treated as normal as it takes away the ‘scary’ aspects of it.

I can’t imagine having to fight Dystonia on my own, and I am in awe of the people who do so everyday! Everything I have gone through over the last 10 months has been made so much easier by my family, I am so thankful that I have such strong, caring people in my life.

You never really know how strong you are until life decides to test you. A lesson I have learned from Dystonia is  never to doubt your inner strength, leap at every opportunity and fight with all your might every day. If you doubt yourself and back out you will never know what you are capable of doing. So embrace life and leap through every open door.

 

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Posted in April 2013, Archive

Bring It On!

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Yesterday afternoon I collapsed outside of my house and started having Non Epileptic seizures and Dystonic spasms. As I was not regaining consciousness I was rushed by ambulance (with blues and twos on) to my local hospital, where I was luckily treated by the lovely doctor who I had seen the last time I was there. The doctor remembered exactly who I was and even where the best place to take blood from me was! I was extremely impressed with how I was treated. I was unconscious for a couple of hours and have very little memory of the event.

Today I am rather sore, but I am also feeling inspired! My illness repeatedly puts me through hell and back, but its ok! I know that no matter what my little Dystonia alien throws at me, I will get through it. The image below depicts exactly how I am feeling.

Whilst Dystonia and Non Epileptic Attack Disorder are truly hideous conditions to have, I could be so much worse off. I could have cancer or another potentially life threatening disease! So I feel blessed that my condition merely limits me.

Through being ill I have had the privilege to talk to and meet some of the nicest people I have ever met. They all support me and give me strength! For example other bloggers and health activists; talking to them is a joy, as they can understand, advise and support me. Another great example are the amazing staff in the chemist by my doctors. I love going in there as I always get a warm welcome and have a quick chat, which puts me in a great mood.

I may suffer from a hideous condition, but I am so much more than just an ill person. I am a health activist, a fighter, I can be anything I want, and I can achieve anything I want. Just you wait and see!

 

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Posted in April 2013, Archive

Life is a Lottery

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I love this quote, and for me it rings true, I may only be at the beginning of my storm but I am already a stronger person for it. It can be applied to anyone and everyone as we each go through our own ‘storms’ at different times in our lives. The struggles we experience, no matter how big or small they are, change us. They allow us to develop and change so that we are stronger, so that we can carry on with our heads held high, it gives us the knowledge that no matter what life throws at us we can and we will beat it every time.

In life people always ask themselves ‘why me?’ or ‘why now?’, next time you feel like asking those questions stop and breath, understand that those questions will not solve anything. You just need to battle your way through to the other side of the storm. It will be hard, but if you give up, you won’t see the wonders that are waiting for you on the other side.

Life is truly a lottery, some of us soar through life with ease and others battle endlessly. However at the end of the day, what will be will be. All you can do is battle on with the knowledge that you are fighting for a reason, that things will get better, and you will conquer every storm life throws at you.

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Posted in Archive, March 2013

Illness and Inspiration

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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.

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Posted in Archive, March 2013

Learning Curves

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Over the last few days I have gone from thinking from one point of view to another. The reason for this is that on Friday and Sunday night I fell. Both falls set of many hours worth of seizures and spasms. Sunday nights fall was the worst. No one was in the room with me when I fell, and I have little memory of the day itself so we can only guess what happened. However one thing I am sure of is that is I really hit my head when I fell. What I hit my head on we don’t know it could have been the piano, the computer, the box or my bed. I am lucky that I didn’t do myself  any real damage. However that fall in particular caused a lot pain, which consequently  meant that I spent the majority of Monday unable to feel my right leg as my brain had disconnected from it, which was not an enjoyable experience. On both Friday and Sunday night, I experienced moments where although I was conscious I was unable to communicate properly. I found that I could not form words or get my mouth to move. Sometimes I was lucky and I could wiggle a finger to tell my mum I was conscious. This really freaked me out and got me thinking. The following picture describes best how I have felt on and off over the last few days.

I want to live my life! I am 20 years old and spend most of the day fighting with my body, just to get to the other room to see my family. I leave my house once a week if I am lucky. I am beginning to feel slightly insane. I want to go back to last March, spend my days on placement and my nights clubbing. I want to be able to hop on a bus and go to the pub to see my friends. I don’t like not having control over my life and my body. I feel like I spend my days shut up hiding from anything and everything that might cause a seizure or a spasm. Yet even being shut up does not prevent them. I still end up in agony, struggling to control my body.

However this second image depicts the second line of thought that I have followed over that last few days. I continue to mourn for a life I no longer have, one that I may never retrieve but at the same time I might. I need to stop mourning for the life I knew and embrace the life I am currently leading. However that does not mean the I give up hope for my old life. I shall always hope that I will be able to return to some sort of normality. For the time being I have to focus on the here and now, accept what is and carry on with my life whilst fighting for control.

I need to learn how to balance having some sort of normality whilst also making sure that I do not push my body over the edge. Like everything in life it is simply a learning curve, one that with time I shall eventually master. I need to remind myself often that I have only been suffering for about 8 months, I am still at the beginning of a very long road. I need to have patience and trust that everything I go through will give me the strength to keep on battling everyday, and eventually beat Dystonia. So for now I shall take deep long breaths, stay calm, and keep fighting on.

One day I shall beat my little Dystonia alien once and for all.

 

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