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

Posts tagged ‘accident and emergency’

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.

 

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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 through my eyes.

When someone gets diagnosed with a condition that it is going to make an impact in some way, it is then that people show their true colours. I am sure many of you are aware of this or have even experienced it. For me it happened gradually, some people quickly disappeared out of my life, some stuck themselves firmly to me, and others decided to bow out later on into it. Although losing people you were close to is a painful thing, it also shows you the people who truly care about you.

Since being diagnosed with Dystonia I have met the most amazing people, with such beautiful souls. To them they don’t see the wheelchair and its occupier, they see a girl whose personality counts more than her physical capabilities.  For example, the incredible volunteers at my local riding school, who are part of the Riding for the Disabled Association. They are such vibrant beings, who managed to get me on a horse, despite all odds. There are no words to describe how much I love these volunteers, how much joy they bring into my life. Then there are my uni friends. They are such loving people. Despite the fact I moved back home, they are always there for me when I need them. They have rushed me to hospital at 2am, and joined me at many hospital appointments and a&e visits. Then there are the amazing people I know/have met through day-to-day life, who are caring and inspiring individuals.

My family has been amazing. They have coped with the spasms, the hysterics, the seizures, the pain, the hospital visits, the hospital admittances, the day-to-day challenges that Dystonia brings. It is their ongoing love for me that helps me through each and every day, that inspires me to keep fighting for control of my body.

At this time all the people above and so many more that have stayed close to me, have been a fantastic fountain of support. They help me through hard times in my personal life and with Dystonia. They show me the light, on days when I feel like hope is gone…and then they hand me some chocolate buttons.

Life is tough for everyone, in different ways for whatever reason. We are challenged by different issues. Some may seem big or small to others but you can never judge how a challenge is affecting someone without experiencing it yourself in their shoes. I can only hope that everyone has a support network like mine. As you never know just when you will need it.

Today has been a good one, full of much-needed distractions. I went riding and despite falling out the front door on the way there – I am ridiculously clumsy – I still managed to do rising trot without setting off a spasm. I am so lucky to be surround be such fantastic volunteers when I am up there, and I ride an incredibly patient horse who I completely and utterly adore! I also attended my pain support/research group. It is a fantastic group which does me the world of good. I can be so open and honest as everyone there can understand to a good degree what I am going through, yet I can also laugh with them at the same time.

Life is too short to be defeated by inconvenient challenges. Just because my brain has decided it does not want to work, does not mean I should hold my hands in the air and admit defeat. If anything it should fill me with determination to show my Dystonia alien just what I can do. My life goals may have to change because of it, but by no means should they get any smaller, if anything I should aim higher. You never know you may one day see me at the Paralympics, or I may be a best-selling author. Who knows what could happen! Who knows what life has planned for us! Embrace whatever style of life you have! Mould it to suit you, push you boundaries and never give up.

I think the picture below sums up my thoughts perfectly.

Emergency Hospital Trip

Yesterday  was an extremely odd day. To be honest I remember  nothing of it! Apparently as I was mixing up my medicine in the kitchen, I collapsed and fell on to our tiled floor and then went on to have a hell of a lot of Non Epileptic Seizures along with extreme Jaw spasms, with mere seconds of consciousness between each one. Due to the fact I really hit my head and arm hard when I collapsed, I was rushed off to hospital in an ambulance. Whilst at the hospital I was monitored for hours and had my hip x-rayed (thank-fully I had not broken it). It was while we were at the hospital that my mother noticed that I was also having Non Epileptic seizures which weren’t taking on their usual form. I was staring blankly, and not responding when my mum spoke to me or when she waved her hands in front of my face. This is slightly concerning as it means that I may be having more Non Epileptic Seizure than we are aware of.

Today I have woken up feeling like I have been run over repeatedly by a truck. I am therefore spending the day medicated to the max, and in bed. The thought of moving is not one I welcome. This incident has given me yet another issue to talk to my consultant about as it is getting beyond ridiculous now.On the bright side of things, whilst my Jaw Dystonia is still playing up, it is not to bad today, which is a relief.

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