Tag: agony

Posted in Archive, May 2015

Adjusting to Dystonia

Posted on by dystoniaandme

When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.

Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.

I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.

I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.

I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.

To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare

Posted in Archive, May 2015

Support System

Posted on by dystoniaandme

Living with chronic illness is never easy. It impacts the majority, if not all, areas of your life. One of these areas is relationships. Whether this is friendships, family, or romantic relationships, chronic illnesses such as Dystonia can have a big impact. It is hard enough for the sufferer to understand what they are dealing with and cope with it, but for people who are not experiencing it themselves it really sums up their characters by how they react.

Personally I think it takes a lot of guts for a sufferer to open to their friends and family and admit that they have been diagnosed with Dystonia. It is not the easiest condition to explain. There is no rash or broken bone that they can see, no medicine that is going to cure you. You are sitting them down and admitting that you are not going to get better, that you may in fact get worse, but that you are hoping that a handful of medication and injections will help control the condition. People will either stand by you or they will turn their back on you.

I can remember when I first announced to those closest to me that I had finally been diagnosed. I was naïve enough to trust that my support system would stay intact. I never expected it to crumble around me. My relationship of two years broke down instantly, and many friends vanished into thin air. At the time I was lost, unable to comprehend how those I had thought would stand with me through thick and thin could just disappear the minute the going got tough. With time though I grow thankful that they did leave, it meant that I was left with a support system I could count on whenever I needed it.

When you live with Dystonia I think having a support system in place is one of the most vital things in enabling you to get by. Emotionally it means I know that I have friends I can count on to listen whenever I am having a bad day and am not sure how to cope anymore. Physically, I can be reassured that whenever I am functionally paralysed for example I know there are people I can rely on to help me. I know of some sufferers whose own family turned their back on them because they simply do not comprehend the condition well enough, I am blessed to have family and friends who are here for me 24/7.

Dystonia can be alienating, in life you do not often meet people with the condition. Surrounding yourself with people who love you despite having a brain that likes to be dysfunctional is important.

Posted in April 2015, Archive

Botox injections

Posted on by dystoniaandme

Today I was up in London to see my neurologist to get my six weekly injections. I was looking forward to speaking with him as this time round my botox had been 7 weeks apart. Normally this would have resulted in severe facial, neck and arm spasms but for a change I have been okay. It is only over the last few days that I have felt the familiar tugging sensation around my eyes, jaw and neck. Whilst I have had spasms in these areas it has been easy to cope with. My arm has been spasming/twitching more but still at what I consider an acceptable rate, so I was eager to discuss with him aiming for 7 weeks again. Now as luck would have it he’s not working that day in 7 weeks time, so my appointment is as usual in 6 weeks, but this something I would like to aim for.

I am not fond of needles at all. In fact watching the doctor draw the botox up each time is enough to make me want to run screaming from the room. Every 6 weeks I turn up at the hospital racked full of nerves, if the injections did not make such a big difference on my quality of life then I don’t think I’d go. I trust my neurologist completely however, and after two and a bit years of having him administer my injections I feel confident in his skill. You can imagine how sky high my nerves rocketed today when upon arrival I was informed that my neurologist was absent. The doctor filling in for him was perfectly pleasant, however having never met him before, I found it hard to sit still in the chair whilst he injected me.

Today was my first round of injections since developing Complex Regional Pain Syndrome. On my GP’s advice I tried covering the area that was going to be injected on my back with topical local anaesthetic. I find it hard just wearing clothing over my shoulder/arm at the moment so was dreading having a couple of needles being inserted. As I have mentioned before I have Ehlers Danlos Syndrome Type 3, this unfortunately means that local anaesthetic does not work for me. I had been hoping that as it was a topical one and not an injection that it would be slightly different and would work, however I discovered very quickly that this was not the case. I cannot describe what my arm has felt like over the last few hours, it has been a mix of a burning and pin and needles sensations. I am hoping that this will die down as the evening wears on.

Hopefully my neurologist will be at my next appointment and we can discuss our next steps.

Posted in Archive, July 2013

The Harsh Reality of Living with Lack of Treatment

Posted on by dystoniaandme

Days like today I wish someone could just wave a magic wand and fix all this! After spending half the night awake due to bad spasms in my feet, now my jaw and neck spasms have decided to be extreme today. The pain my Oromandibular Dystonia causes is pretty much indescribable. It feels like my jaw is dislocating and that the spasms are trying to force my jaw off my face. The pain often causes me to grab my face, as I feel like I need to try to force it to stay in place. The pain then leads to seizures, I have had many seizures today, and all of this mixed together consequently leaves me exhausted.

I have had to resort to taking my Diazepam today which adds to the tiredness and is currently leaving me feeling spaced out, which I suppose is a nice distraction from the pain. I have always said to myself that this blog will be nothing but pure honesty, and to be honest right now I would just like to cry due to the pain.

Knowing that I can have my injections done tomorrow afternoon is a calming thought . They say that you are to try to live a stress free life when you have Dystonia as stress can worsen your symptoms. How are you meant to live a stress free life when you spend weeks in agony? When your Neurologist, the person who is meant to help you, has become someone you have to battle? How are you meant to be stress free when your life is upside down and the medical profession who are meant to help you are making things harder!

I don’t have down days very often but today is a very bad one. I know there so many positives around me but it is very hard to focus on them when the pain is this bad. I have no energy whatsoever today. I am still in bed and am trying to muster the energy to get up and changed but I would so much rather roll over and go back to sleep.

I have well and truly had enough, my Neurologist is going to have to do a hell of a lot tomorrow to convince me to stay with him. 7 weeks overdue for my injections is ridiculous and I am not prepared to go through this experience ever again, it is just too much!!

 

Posted in Archive, June 2013

Which Open Door Shall I leap through?

Posted on by dystoniaandme

Despite it being the third most common movement disorder Dystonia goes almost unknown to the public. It lingers in the shadowy background letting its brothers, Essential Tremor and Parkinson, take the limelight. By slithering along in the back alleys it can prey on its victims with ease, bringing devastation to those it touches. The medical profession cowers in its presence, refusing to open their eyes and admit what they are seeing, they send you to a psychiatrist instead, not understanding that this just gives the Dystonia more time to make itself at home in your body and wreak havoc when it sees fit.

By the time the Consultant realises it is Dystonia, you have already been suffering for so long. The spasms leave you drained from the pain, and you are desperate for any sort of relief. Then it seems like a miracle has happened, the consultant whips out a tiny bottle that brings promises of relief from the spasms, the pain, the fight. A few injections of this will sort you out, he promises, he tells you it won’t cure you and you will need it again in three months. You are over the moon, such a long period of relief seems too good to be true. The consultant, who seems to hold all the answers you have searched for, does not warn you that one day you may be fighting him.

Five weeks into your pain-free period agony grips your jaw, the spasm pushing it across to the point you’re sure it will dislocate. Emotions run through you: anger, sadness, heartbreak, devastation. No one warned you how hurt you would feel when the Dystonia reared his ugly head agony. You count the weeks on your hands repeatedly, this should not have happened for weeks yet. As the reality sinks in that you still have to wait at least 6 more weeks for more of the injections numbness sweeps through you. You feel so tired. A small part of you wants to curl up in a ball on the floor and cry.

You try desperately to contact your consultant but he ignores your pleas for help. Who do you turn to now? There are many open doors you could run through, but which one holds the key to help? Who will help you now? How many more Consultants are going to abandon you after dangling hope in front of you?

Which open door shall I leap through?

Posted in April 2013, Archive

A glimpse into the consequence of pain

Posted on by dystoniaandme

Normally if you are in pain or need help for some reason, you are able to call out or make a noise/movement to indicate that you need someone to assist you. I cannot always do this and to be honest it terrifies me. It is one of my bodies latest tricks. I class it as one of my Non Epileptic Attacks, even though it does not look like a seizure.

It will start with a spasm somewhere in my body, as usual I will try to ignore it and try not to get wound up. Then, if it is a bad spasm/spasms comes the agony.

Picture this, you are lying on your bed reading, ignoring the searing pain that is consuming your right leg. Suddenly the book falls from in-between your fingers. You frown, there is no spasm in your hands, so why did it fall. You have not realised that your eyebrows never moved when you frowned. You go to reach down to pick up your book, but your arms don’t move. You try to wiggle your fingers, but again they do not move.

Your getting a bit concerned now. Taking a deep calming breath, you order yourself to stay relaxed, there’s no point getting worked up as you know it will do you no good. You decided to lie on your back with your eyes closed, so that you can day-dream peacefully until your body responds better. That’s when you realise that you no longer have control of any part your body. You are stuck on your side, your arms frozen in the position they were holding the book. You cannot move. Your eyes are stinging because they are no longer blinking. Your eyes can only take so much before they spasm upwards due to the pain.

Now you are blind, unable to move and in agony. You try to yell for help, but your lips do not move and no sound comes from your throat. You are locked in your body. Unmoving, making no sound. You can feel the panic levels rising, you try to control your breathing and keep calm, but its hard. The pain from the spasms in your leg and eyes are only getting worse. You want to scream but only silent tears run down your cheeks. You can hear people in the house, they think your fine. No one will know what’s happening unless they come to check on you.

The minutes are slipping past so slowly. You have only your mental voice for company. The panic is getting worse, as is the pain. By now you know that unless someone comes to help you soon, the unconsciousness of a Non Epileptic Seizure will soon engulf you, silencing the one part of you that is still free, your mental voice.

You can feel the unconsciousness creeping up on you as the pain gets worse, its like a slow fog creeping across your brain. You can feel that your state of awareness is slipping away bit by bit. It won’t be long now. You know that there is nothing anybody can do to help you. A small part of you is welcoming the creeping fog, in a sick way it will help.

Its getting hard to think now.

The fog finally consumes you.

That is a glimpse into the latest torture that I put up with. Sometimes the unconsciousness helps, and when I regain consciousness I’m ok, other times this goes on for hours and hours, and it is truly terrifying. It takes severe pain to cause it all, and part of me is now extremely frightened of feeling pain as I know what may come with it. All I can do is hope that each spasm will not be too bad, and if it is bad, try to relax.

The sun is shinning today, and I’m taking that as a good omen for a hopefully pain-free day.

 

Posted in Archive, March 2013

Disgusting Medical Care

Posted on by dystoniaandme

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!

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!

Posted in Archive, January

Wibbly Wobbly leg

Posted on by dystoniaandme

Since my last post my ability to move around has deteriorated rapidly! The shake/tremor in leg has become extremely violent and my leg feels like its made of jelly. The force of the tremor physically shakes the upper parts of my body as I try to hobble about. I have never had a sense of balance, so you can imagine how hard I am finding it to stay upright, when my leg is shaking me to the point that I would fall if I was not being held up. This tremor has made my knee extremely painful, the other night the pain was so excruciating that I ended up having a Non Epileptic Seizure.

I am trying to work out whether this tremor is a new development to my leg or if it is a development of a Dystonic movement that was already happening. You see, often when my leg goes into spasm, as the spasm is about to go, my right leg would shake like mad. The way I always thought of it was that my leg was shaking away the spasm, this sounds silly but it was a comforting thought, these tremors would last from to seconds to a good couple of minutes. I think it is likely that this new issue is simply a development of the previous tremor, as Dystonic movements do develop (get worse).

However this creates a whole new ball game. I know that with Dystonia, you cannot really forward think, as you never know what will happen from one day to the next. Nevertheless I find myself having to think forward, as I like to have some sort of plan in place. After speaking to someone with similar leg problems to myself and hearing what they do to manage their symptoms, I have had an idea which I would like to discuss with my doctor. I want to put across to him the idea of getting a knee or leg brace. I have previously used a splint for my hand spasms and I found this very helpful in containing the spasms and most of the time it prevented the spasms from getting too extreme. As this worked well for my hand, I think it would make perfect sense to try out on my leg.

I shall of course listen and take on board anything my doctor suggests, I presume he shall offer me some sort of muscle relaxant to help, and I shall happily do/try whatever he wants me to. However I think I shall really press this idea. After looking into it more, I have read about a number of people who have tried knee or leg braces and found that they had good experiences with them. I plan on waiting a few more days before I go to my doctor. I had originally planned on waiting two weeks before I went but I don’t think I can deal with the pain the tremor is causing for that long. The reason for waiting is so that I can go and say, this has been happening, I believe it is a development of a previous movement, its been having for X many days and this is what I want to suggest. For me, I think this is the right approach to take with my doctor.

Who knows what will happen, I can only hope that he decides to give my idea a go! Until then I am going to avoid moving around as much as possible, so that I do not cause myself any more pain!

 

Posted in Archive, november

Jaw Spasms

Posted on by dystoniaandme

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.