Posted in Archive, July 2013

The Many Wonders Of The Brain

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, May 2013

Dystonia Alien Gets Creative

My Dystonia alien seems to have come up with yet another inventive spasm for me. Now my head and neck rather violently jerk to the left whilst my mouth opens and closes making a sort of popping noise. It’s rather painful and leaves me feeling like I have pulled the majority of the muscles involved.  The spasm happens all day, sometimes l go a few hours without it and then it will start all over again, I have noticed that when I get tired in the evening this spasm happens far more often.

My mum emailed my consultant for me last night, updating him and asking him if they were any closer to knowing when I would be admitted for a week. However it normally takes a fair period of time for him to get back to us, so I am not expecting to hear from him any time soon. I spoke to my GP this morning, asking him if there was anything he could suggest I do as I am in a fair amount of pain and getting to sleep and staying asleep is becoming almost impossible. At first he tried to persuade me to try the Clonzepam again, but as it turned me psychotic the last time and had me wanting to cut my hair off I told him I would not go back on it. So he has decided that I am to up my Tramadol, which is a pain blocker, to two pills in the morning and one pill in the evening until the pain side of things settles down, then I shall go down to one pill in the morning and one pill in the evening. I am also to go back on to a medication called Baclofen which is a muscle relaxant. I had been on this previously but my consultant took me off it as at the time it was not helping me, it made me forgetful and I was on a very high dose. My GPs thinking is that because so much more of me is affected by the Dystonia than previously the Baclofen may help, if it does help then I am to increase the dose.

I am really hoping all the medication does help, I feel like I have fought against Dystonia for a fair while now without a lot of help from the medical society, and a bit of help in this endless battle would be greatly appreciated. I have not been able to get to sleep easily lately and I am waking up often in the night due to spasms. Lack of sleep is beginning to add up and being rather tired in the day makes fighting against my Dystonia alien that little bit harder.

I am a big believer that when you suffer from any sort of illness you should always explore alternative therapies to see if you can get any relief from them as taking lots of pills (like I currently am) is not good for you. When I was little I suffered from Chronic Fatigue Syndrome and had reflexology for a period of time to help. It certainly relaxed me and I always had a great nights sleep afterwards. With that memory in mind I have found a reflexologist who comes to your house and is not too expensive. I have no idea if it will help me at all but my theory is this, when you have Dystonia you are advised to avoid stress and to try to stay relaxed, therefore having reflexology done, which is a relaxing/calming experience, should provide some sort of help, even if it is just having a great nights sleep afterwards. I am having my first session next Monday and I am really looking forward to it.

I am hoping that with a combination of medication and reflexology I should be able to feel ‘better’ in myself  and have more energy to fight Dystonia with!

Upcoming Hospital Admittance

On Tuesday I wrote an email to my consultant, explaining that now my whole body was being affected by my dystonia and that I no longer knew what I was expected to do. I have tried to bring a number of positive activities into my life and carry on with everything as much as possible without letting my Dystonia affect me, however all of these activities are rather hard to do when your whole body is out of your control. I asked him for advice, and if I he could refer me to anything or suggest anything I try. Yesterday my consultant neurologist replied, he apologised for how hard it was to get me treatment due to long waiting lists, and has offered to take me into the hospital for a few days (up to a week). Whilst in the hospital I shall see him and the Neuro-physiotherapists. I am rather hopeful that this shall mean that  I shall come away from my short stay there with a better idea of how to cope/work around my spasms.

I also received a couple of letters from my consultant in the post yesterday. One of them was a letter for us to take when ever we go to hospital/A&E, so that the hospital know how to treat me. He sent us several copies of this letter, which I am extremely thankful for, as it should enable me to receive the correct treatment with ease from them. Another letter was a copy of the one he has sent to my GP, explaining the treatment he is currently giving me (botox injections to the jaw and neck) and that he wanted me to start me on Clonezpam. I had mentioned to my GP the other day about the fact my consultant wanted me on this new medication, but because I did not know the dosage he was unable to prescribe it for me. This now means that I will be able to phone my GP tomorrow and ask him to prescribe it, as the dosage has been written in the letter. I am rather excited to try this new medication, as it should hopefully prevent my Non Epileptic Attacks.

I am feeling ever so happy today, as I feel like this upcoming hospital admittance, and the new medication should do me the world of good. Knowing that there is a plan in place is a very calming thought and I feel like I can relax and not worry about my little Dystonia alien as soon the right people will be able to see his antics and help me.

Posted in Archive, March 2013

Learning Curves

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.

 

Posted in Archive, February

Benedict’s Obstacle Course.

 Imagine this: You wake up in the morning, your eyelids open but you can see nothing due to a spasm pulling your eyes back. You massarge around your eyes blinking violently, trying to beat the first obstacle of the day. Suddenly your sight is back! You celebrate silently, not wanting Benedict to realise you have won, in-case he wants to take revenge. Next you decide to dress quickly before he wakes up and realises what you are doing. You have your top half done, and one leg in your jeans, when suddenly Benedict strikes! Your right leg contorts, as if it’s trying to physically turn backwards, meanwhile your foot has turned under and is dragging along the floor. You stop, take a deep breath, and then start attacking your own leg. Desperately trying to get your jeans over it.

Bang! Your hurried attempts have caused you to fall backwards on to your bed. However you keep on wrestling with your leg until finally you have won. You are officially dressed. You look in the mirror, do you dare attempt to tame your hair and do your make up? With a quick glance at the clock, you decide to attempt to do it. Nervously you brush through your hair, and quickly put it up in a simple pony tail. Relief sweeps through your body. Now on to the make up. Your doing well, almost done. Then, suddenly, pain sears through your eye. Your right hand, which is holding the mascara brush, has spasmed, causing the brush to go straight into your eye.

It has now been two hours since you got up. You have finally managed to get dressed, with hair and most your make up done. Now you need to get through to the living room, so you can grab your bag. Splinting your right hand up first, so as to contain any more unwanted spasms, you slip your arms through your crutches and hop out your room into the hall way. You glance down at the shoes and bags scattered around on the floor like a minefield, and hop around them. Careful not to misplace a crutch or slip.

Now you have reached the penultimate hurdle. You squeeze yourself past the sofa and clothes horse into the living room. Reaching down you pick up your handbag, and swing it over your shoulder. You give yourself a satisfactory smile. You are beating Benedict’s obstacle course so far. You start hopping forwards. You go to squeeze back through the gab between the sofa and the clothes horse…when your right knee collides with the end of the sofa. The knock immediately triggers a spasm. Your leg is twisting side ways and upwards. Pain is taking over. Your balance is now lost. You haphazardly try to place your crutches in a position that will stabilise you. It is a losing battle. You fall backwards onto the other sofa that is just behind you.

After the spasm has calmed down, you decide to take on the final hurdle. This time you choose to leave the crutches behind. Hoping that it will enable you to pass through the dangerous gap between the sofa and clothes horse with ease. You jump up onto your good leg. Keeping your right one off the floor, bent slightly. With arms whirling round widely to prevent you from falling, you hop successfully past the sofa and back into the hallway. You have finally reached the front door! You do not have much further to go. You link your arm round a family member for support and hop out the door. In front of you lies three large steps. Each one looks like a mountain. It fills you with dread. Half of you wants to turn back around, go back to bed and claim defeat. However you hold your ground and preserver, refusing to give in to the evil Dystonia alien, Benedict. You bend your good knee, and cling to the railing with your working/free arm and hop up the huge steps.

You have finally reached your goal. You have reached the car that is waiting to take you to your doctor’s appointment. For the mean time, you have beaten Benedict the Dystonia alien.

Welcome to my life!

 

Posted in Archive, January

Benedict comes out to play!

Today Benedict (the dystonia alien) decided to really wake up and came out to play. I was happily curled up with my youngest sister watching the 8th Harry Potter film, and all of a sudden my index finger on my right hand started to tremor. This gradually progressed to the rest of my fingers and within a few minutes my whole hand was shaking. I laughed it off, not wanting to worry my sister, and carried on watching the film, trying to ignore my hand. It eventually stopped shaking.

For the next few hours it behaved rather well and I relaxed and forgot about it. However when my mum held my hand to help pull me up, later in the evening, it instantly went into spasm and the tremor returned. Again this seemed to last a fair while. Consequently I have decided to put my splint back on my hand and refrain from using it as much as possible until my little Dystonia alien has decided to settle back down.

I am trying to stay positive and not let the issues with my hand and leg get to me. Tomorrow I have my riding for the disabled lesson at my local stable, and I don’t plan on letting my Dystonia alien stop me from getting on the horse!  I know it will make mounting even more difficult and I know my body will be bad afterwards but riding makes it worth it!!!I cannot wait for tomorrows lesson!

 

Posted in Archive, november

Jaw Spasms

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, October

Determination!

So I know Dystonia is thought of by the medical society as incurable but I have to disagree. Personally I think that the medical society know so little about Dystonia, that to say it is incurable is madness. Just because they have not found a magic treatment plan or pill that works for everyone does not mean it cannot be cured. Why accept such such a depressing prognosis? Why not stand up and say NO! I am going to beat this thing and prove you all wrong!!

Life has thrown a hell of a lot at me and so far I have beaten every single thing. I plan on beating Dystonia too. In 2009, I suffered from Complex Regional Pain Syndrome and I was hospitalised for six long months, yet I didn’t let it win! It took about 9 months but I beat it! I had to teach myself to walk again, I had to retain my brain to understand that things touching my leg weren’t actually harming me. It was agonising but I beat it!

If I can beat CRPS then I can beat Dystonia. The doctors all admit that CRPS and Dystonia are very similar, and  treatment for them both is again very similar. So in my eyes if I can beat one, then I can beat both! Before all of this happened in July, I was so happy, I was training to be a midwife and loving it! I refuse to let Dystonia stop me!

So little Dystonia alien, if you can hear me, I would be very afraid! You have had your fun and now it is time for you to leave! I have had enough of you controlling my body! I am going to take back my body and I am going to go back to my studies!

Posted in October

Dystonia Alien Plays Games

Tonight the dystonia alien decided to show me what else it could do with my hand. Normally when my spasms last for a long period of time we end up trying to force them to release. However this particular spasm seemed to be determined to stay for as long as it wanted. Every-time we thought we had managed to release it, it decided to return. In the end we gave up, and decided to let the dystonia alien have its fun. The theory was that if we let it run its course, then perhaps the time in-between the spasm finishing and then returning would be longer. As I am writing this, it is still in spasm. If the muscles and tendons in my hand had the ability to scream, right now they would be.

The image shows the Dystonia aliens latest spasm game…

Posted in Archive, October

The Claw

My dystonia is often referred to as the alien by family and friends. For those of you who have seen Toy Story, you will be able to understand how amusing the following was. Over the last few evenings the alien, when it has decided to spasm, has looked more and more like a claw. We instantly made the link to the aliens in Toy Story. This is now the image I have in my head of my dystonia.