Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Archive for the ‘March 2013’ Category

A flicker of faith restored for the NHS

On Tuesday night I ended up going to A&E to be treated for dehydration. By the time I was seen I had been without water, medication and food for about 32 hours. I count myself extremely lucky that the triage nurse and Doctor who treated me actually knew about Dystonia – this is a first! It took awhile to get a cannulae in me as my veins had done a disappearing act. I was given IV fluids and IV medication. The medication they gave me was called procyclidine. I had never had this medication before and was stunned by how well it worked.

The doctor who was looking after me was very caring, and came and checked on me every five minutes. He instructed me to take the procyclidine for two days (today is my last day on it). I am extremely glad they administered it to me as it really does seem to have had a beneficial effect. I am going to discuss with my consultant, whether it was worth continuing this medication or not.

I am glad that I was treated by two very nice people on Tuesday, as it restored a bit of faith in me for the NHS. Every time I am dismissed by the medical profession  it ends up inspiring me to make a difference! Just because my illness is not well known does not mean I should be shoved to the side.

 

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Disgusting Medical Care

I am seriously fed up with and disgusted by the treatment I receive from the medical profession! Even my GP, who is usually in my good books, has appalled me. Since 2:45pm yesterday afternoon my jaw has been clamped shut and deviated. I cannot eat, drink or even take my medication and have not done so since that time yesterday! We asked my GP to do a home visit, and after feeling my pulse and stomach he left. He claimed that he was sure my jaw would go back eventually and that he did not know what to suggest.

I know that eventually my jaw will go back. Eventually being the key word. We do not know how long it will take for my jaw to EVENTUALLY go back. I have not had a drink of water or taken any medication in almost 27 hours now. How long do they expect me to go without fluid or medication? Surly the logical thing to do is to admit me into hospital put an IV and administer me fluids, my meds and muscle relaxants/pain relief???

I do not understand why I should have to accept and put up with such disgusting treatment! I am disgusted and highly irritated!

Illness and Inspiration

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.

Tongue Twister

Last night my little Dystonia alien decided to play a rather amusing game with my tongue. Now he has done similar things with it before e.g the spasm causing it to poke out or to wriggle when I try to talk. However before these spasms have only lasted for minutes. Last nights tongue spasm lasted for around 45 minutes.

My tongue felt as if it had folded itself under in half. It was not painful, but it was an extremely odd sensation. I then made the mistake of trying to talk. My words came out slurred and the majority of them were impossible for my mother to understand. However I am a complete chatterbox, I love to talk! So my mother and I sat there for a while with me trying to talk and my mum having no understanding at all of what I was trying to say.

This spasm did however provide lots of laughter. My mum and I, were doubled up in fits of laughter at it. As soon as we calmed down I would try to talk to see if my tongue was behaving yet, and we would end up shaking with laughter again. It was brilliant. As much as I would hate this spasm to keep getting more frequent and longer, I must admit it was a funny evening. In a way it provided us with a much-needed up lifting period of time.

Though I do feel sorry for my mum, for once my tongue spasm had ceased, I decided to tell her exactly what I had tried to say to her for 45 minutes  which was nowhere near as funny as me telling her when my tongue was in spasm. Anyone who did not know what was going on most likely thought I was a drunken lunatic.

As much as I dislike having Dystonia, I am glad last nights tongue spasms happened, as it reminded me that even at times when I am not in control, I can still laugh and have a good time.

 

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.

 

Doctors, Star Wars, Horses and More!

This week has been rather busy, which has left me feeling tired but extremely happy. On Monday I visited my GP to seek some advice. To be honest he was not really able to give me any, however I expected this. I explained to him the disastrous trip to A&E the other weekend and asked if he could give us any advice for if this happened again. Whilst he was shocked by the treatment we had received, he was unable to offer any advice about what we should do the next time this happens. On the bright side he has said that we can continue to use the muscle relaxant that we were given on the Friday in emergency situations as a last resort. We are still waiting to hear back from my neurological consultant in regards to advice/explanation on why the sudden change in presentation etc.

On Wednesday I had a couple of friends round, and I had a really good laugh with them. It felt so good to feel ‘normal’. I spent the day laughing and watching Star Wars with them, which was pretty much perfect!

Yesterday I was well enough to go back to riding after having to have a week away from it. I was  completely ecstatic! The lesson went extremely well, and I managed to do more rising trot than I have managed to do before which was incredible! The horse I ride, Connie, is extremely patient, which gives me so much confidence, as I feel that my spasming limbs will not cause to much of an issue. I came home from riding covered in so much of Connie’s hair that I was beginning to look a bit like a horse myself.

Last night I attended the penultimate pain support/management/research group. As usual it was fantastic and I had a good laugh with everyone and left it feeling very relaxed. I have suggested to the group that once it finishes we arrange to meet once a month for a coffee, so that we can all continue to support each other. It is something that they all liked the sound of as we have get on so well together.

Today I am exhausted, however I am glad of this. I am not used to lots of stimulation so after having a busy few days, I am going to relax and take it easy. I also have a busy weekend planned with friends visiting me on Saturday and Sunday. This week has been perfect and I have felt so ‘normal’ through-out it. I am an extremely happy girl.

The following quote/image, is one that I say over and over to myself every time I feel like I am being defeated or that things are hopeless. Just because I have not managed to cope today does not mean that tomorrow will be the same. Tomorrow I could think of something else to try/do. I just need to keep on smiling. As long as there’s a smile on my face then I know I am winning.

 

Two steps in the right Direction

After a week of being in pain, I am feeling a lot better! On Friday one of the GPs at my Doctors surgery prescribed me a muscle relaxant to help with the spasms in my back, it has worked wonders! The spasm has gone, my body is no longer twisting and I can finally move around without being in pain! I am going to my see GP on Monday to discuss whether we keep this particular medication for emergency situations or if there a different muscle relaxant that he feels would be more beneficial.

Last night I gave myself a rather pleasant shock. I had gotten out of bed to do something, and I walked the two footsteps there!! My body did not react to it at all! You can imagine my joy, as I have not been able to do this since January 1st!!! Not wanting to push my luck I quickly hopped back into bed, trying to work out if I had done anything differently or if it was just pot luck. I am so happy, and I am hoping that my body will continue to progress like this.

It is such a relief for my body to finally be doing something ‘normal’ without over reacting. Now I know that I may not be able to do this again, it may have been complete fluke, but on the other hand it could just keep improving. All I can do is hope that this a good sign. Hopefully when I receive my leg/foot splint that the Surgical Orthotic department are making for me, this should help me progress with walking even more! I just have to accept each day as it comes, it’s all about taking baby steps, as there is no use trying to run before I can walk.

No matter how dark may life may seem, there is always a candle of hope flickering somewhere, you just have to look for it!

 

Aside

A flicker of hope at the end of a dreadful weekend.

Today has felt like someone has lit a tiny candle at the end of long tunnel, one that I am still at the beginning of. I cannot turn back, all I can do is head towards the tiny flickering light I can see in the distance. I must jump, duck, slide, and fight hurdle after hurdle on my way to that light. That light is hope! Finally being able to see it, feels like I can put everything into perspective. I can breathe, and acknowledge that no matter how much I have to go through, no matter how much physical and emotional pain I have to go through, there is happiness at the end. I will get my happy ending!

I am the type of girl, who wont just sing in the shower, I will sing under my breath in the shop, I will sing at the top of my lungs in my house. Singing, for me, creates happiness. And if by chance I am singing a song from a Disney film such as Pocahontas or Mulan, then I am completely joyful and content. However, I cannot sing when I am unconscious  I cannot sing when my body is bend backwards due to a spasm in my back, and my neck is trying to over rotate due to another spasm. Agony, causes me to have Non Epileptic Seizures  However this weekends agony, took things to a whole new level.

Saturday night, my neck and back were awful. I could not move without setting a spasm off, and as soon as I had a spasm I had a seizure. It was a vicious circle. One that I have no recollection of. My mum ended up having to sleep in my room that night, due to the agony I was in and the lack of consciousness I had. Eventually I thankfully fell asleep and the spasms and seizures stopped. I had hoped that Sunday would be a better day. Despite my neck still insisting on spasming, the morning started off well. At midday, I unfortunately collapsed from standing, giving my head and body a good whack as I landed. Whilst the spasms were slightly more frequent, at first it seemed that this fall had not done much damage. However I quickly began to deteriorate. By 7pm the seizures had become constant, and the spasms wouldn’t stop. I was getting mere seconds of consciousness now and then, before slipping straight back into another seizure. My mum had originally thought that we would do the same as the night before and ride it out, however by midnight she phoned for a paramedic, who after assessing me phoned for an ambulance.

I arrived at my local hospital at 2am. I finally regained consciousness between 5 and 6 am. A doctor did not come to see me until 8 am! This particular doctor worried us. We were completely convinced that she was a crazy cleaner who had put on some scrubs and stolen a stethoscope. On seeing me she felt my forehead and told me I was beautiful, she then informed us that there was nothing she could do for me other than pray, which she then did. Now, I have nothing against prayer. I am Christian, and I appreciate people praying for me. However when I am in a hospital it’s not what I want or need! I need medication! If I was the doctor I would have tried administering muscle relaxants to see if they would take the edge of the spasms and in turn calm down the seizures. The doctor then told my parents that the hospital could do nothing for me and they should take me home, this was despite the fact I was still having dreadful spasms and could not sit up without going into a seizure.

My mother expressed her concerns to a nurse, who then called a consultant into see us. This man was rude beyond belief, if I had been well enough to argue or make a complaint against him then and there I would have. At one point during a seizure my mother tried to shield my head to stop me from hitting it against the metal bars on the bed. The consultant told my mum to stop it and that I would not hit my head, he refused to listen when my mum pointed out that I had already hit my head on them several times. He then started rambling on about the type of seizures I was having. My mum tried to point out to him that we already knew that I was having Non Epileptic Seizures, and that we were not concerned about them, we were concerned about the sudden change in my spasms and the way they had presented themselves so violently. The consultant listened to none of this and told my mum to stop talking. He was useless, arrogant, and down right rude!

We tried to get the hospital to call my consultant up in London  to see if he could offer us any advice, but they refused to do this. My step dad had to do phone my consultants secretary instead and leave a message. Hours later, after my body had eventually calmed down, we left the hospital, with no help from them. I felt so angry and upset. I had been in extreme pain, and yet they did nothing. We had to do battle with them just to get them to give me some basic painkillers!! Once I arrived home I phoned my GP and explained the situation to him. He was extremely shocked at the lack of care I had received at the hospital and prescribed me some stronger pain relief. The whole weekend had left me feeling physically and emotionally broken. It was ridiculous.

Today, I had to go back to the hospital. Luckily this time it was just for an appointment with the surgical orthotic department. The man I saw was superb. He had dealt with Dystonia before and had a good understanding of it. After having a feel of my legs and getting me to stand up and show him the spasm, he said he thought he could help! He is going to make a splint that should hopefully prevent the spasms twisting my leg into painful positions. Whilst we there he made a plaster cast of my leg/foot, which should be ready for me in around 3 -4 weeks. He said that if the splint did not work for me then he would look at what other ways there were for him to help me!  After telling him about the spasms my arm does, he suggested I get my GP to do another referral to him so that we can look at what he can do to help contain the spasm.

It was such a positive appointment. It helped me to not completely give up hope on Doctors and showed me that there are a handful out there who want to help you. You just have to find them. Both my neck and back have behaved so far today, which is fantastic and gives my body some much-needed relief. I feel slightly ‘normal’ again, to the point that I can see the distant light at the end of the tunnel. I can now relax and sing along to my favourite songs, knowing that no matter what happens and how bad it seems, there is always going to be something positive at the end of it. I just have to find it!

Life Challenges: Would you fight or would you run?

At 20 years old I didn’t expect to feel like my world was crumbling around me. I thought that I would be out clubbing with my friends, or trying to stay awake during a night shift on placement. I expected to be having the time of my life. The reality is extremely different to the expectations I had.

Today I felt like life was trying to show me just how difficult it could make my life. I knew this weekend would be a hard one anyone due to personal things, however it has so far been hell. Yesterday afternoon until I went to bed, my hand did an extremely painful spasm, that resulted in me having hours of Non Epileptic Seizures, with only a few seconds of consciousness in between. Then today I have spent the majority of the day unconscious having seizures. Again these were caused by a bad hand spasm.

I feel like every bit of normality I had (e.g uni, relationship, walking, freedom) has been cruelly snatched away from me. I have to fight constantly with different government departments, with the NHS, and with my own brain. I won’t ever give up, but at the same time I am already very emotionally and physically tired.

Today due to spasms and seizures I have not been able to get out of my bed. I have felt so many emotions, such as anger and sadness, in some ways I feel as if today has defeated me. Now I know I will get up tomorrow and continue to fight, but I should not have to fight! Days like today I dread because of the way I feel physically and emotionally. I am lucky that bad days are few and far between. I have not felt this bad since January 1st. I will never stop fighting Dystonia, just like I will always campaign to raise awareness of it.

I keep thinking how silly it is of me to get so upset over everything that has happened to me. I could be so much worse off. I guess in a way I am grieving for the life I had, whilst carefully trying to create some degree of normality for myself. Life challenges us all in different ways. Whether we run screaming away from them at the top of our lungs or battle it with all we have, is up to the individual. For me I shall battle on, whilst knowing that on some days Benedict is going to have won and I am going to be unable to cope, but that is just at that moment in time. Who knows how I will feel the next day or the next month or even the next year! I need to learn when to accept defeat for that day and start preparing myself to battle on the next.

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