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

Posts tagged ‘hope’

Aside

Positive Week

The other day I wrote about how negative the majority of my appointments have been recently.I am thrilled to say that this trend has not continued recently. Last week I attended a physiotherapy session, I had gone prepared to do battle and expected to be discharged at the end of the appointment. I could not have been more wrong! The appointment on a whole was extremely positive and uplifting. I made such progress last week that I could not believe it, I don’t think my physiotherapists could either. I wore my splint for the entire session which enabled me to do more as my spasms are contained to a degree.  My physiotherapists have not run a full session with me wearing my splint before, and I think they were quite amazed at the difference it makes. We are hopeful that the upcoming adaptations to my splint which in theory will contain my spasms further, will enable me to walk properly as my foot should not be able to turn upside down.

I met with the Orthotics today to discuss the adaptations that are going to be done on my splint. The original plan had been to make one that would fully encase my leg, however this had several risks to it. At the moment several of the straps on my splint are slightly elasticated, this is great for comfort but when my foot spasms it means it can get into pretty much any position it feels like. Instead of going for a full on enclosing splint they are going to swap the current straps for more restrictive ones with no give to see if this makes a difference. Hopefully it will, and if it doesn’t then we go back to the original plan. I also had splints fitted to both of my knees while I was there on the request of my physiotherapists. The idea behind this is that it will prevent my knees bending back as far due to my hypermobility, and they hope that this extra support may lessen the spasms in my feet. They have no idea if it will or not but it is worth a try.

Luckily these knee splints fit under my trousers as they are rather bulky! However to show you all what I am on about I have taken a photo with them over my trousers.

 

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ATOS appointment & Upcoming Specialist appointment

Yesterday I had an appointment with ATOS to prove to them that I am disabled and to discuss/show them how much Dystonia affects me. After some horrific telephone conversations with them, which I am making a formal complaint about, and from reading some dreadful news articles about them, I expected the appointment to be awful. I had mentally prepared myself to meet a rude practitioner who was not prepared to listen. I was therefore pleasantly surprised by the lady who saw me. She came across as if she really did want to help me.

Now I don’t remember much of the appointment due to a few seizures I had whilst I was there but the bits that I do recall and the parts that my mother has informed me of paint a picture that goes in my favour. Upon arrival my feet were already in spasm due to the cold outside, then the lights set my eye spasms off, and some head movements I was asked to do set my head tremor off. The physical assessment side of the appointment was stopped early as the Doctor thought it would be unsafe to carry on with it. Therefore only the verbal information my mother and I gave her (which she typed up)  was complete. I left her with copies of two letters from my consultant as well. After everything she saw I do not believe she could write anything against me.  However I am still hovering on the side of caution until I receive the report.

This coming Saturday I have an appointment with an Infectious Disease specialist who has an interest in Lyme disease. I am rather excited and nervous for this appointment, as hopefully a treatment plan shall be discussed/put in place. I have had many conversations with his lovely secretary who has been extremely informative, understanding, helpful and has helped me trust I have made the right decision choosing this Doctor. I am trying not to get my hopes too high incase the appointment does not reach my expectations, however I am still very excited. I have prepared a list of questions to ask in the appointment so I know exactly where I stand and what treatment options are available to be.

I look forward to Saturdays appointment revealing my next steps!

 

Stimulant Experiment Results

As many of you will know, around a month ago I attempted to cut all stimulants out of my diet to see if it would have any impact on my tremors. Over the last week I have slowly introduced stimulants in low quantity’s back into my diet to see if there would be a noticeable difference in my body.

The results from my little experiment were extremely interesting. Whilst cutting out the stimulants did not stop my tremors it reduced them greatly, I would say it almost halved the number of tremors I have in a day. When I reintroduced the stimulants back into my diet this week, the number of tremors I have been having shot back up! I was careful to only consume a small quantity of stimulants just in-case it caused an increase, I did not expect this small amount to have such a big impact!

It is interesting to know that stimulants do actually have a physical impact on my Dystonia. Now that I know just how much of an impact it has on my symptoms I am going to make sure that I avoid stimulants as much as possible.

I find knowing that it impacts me to be a comforting thought, as it means that by avoiding consuming stimulants as much as possible, then to a degree, I have control over the severity and frequency of my tremors. It gives me hope that there are natural ways to control and treat this condition along side medication.

I am going to do more research into foods that can impact Dystonia to see if I can find anything else that I may benefit from cutting out of my diet.

 

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!

The Little Improvements

Every day I am noticing little improvements in myself. For example today I put my foot flat on the floor!! Normally this would have caused a spasm. I was absolutely thrilled that it didn’t spasm, it was yet another positive improvement. I am putting all my little improvements down to one of my medicines. I am currently on a variety of medicines but Gabapentin seems to be the only one that is making a huge difference. At the moment we are slowly upping my dosage, to see if it will help me any more than it already has.

I am clinging to the prospect that it could be a ‘miracle drug’ for me. That if I take enough I may eventually walk, have my sight all the time and be able to use my right hand again. My biggest hope is that it will be enough to enable me to return to my midwifery training. I would take anything right now if it would enable me to able to return to uni and start doing my training again.  With each improvement I make, I get more and more hopeful that I will return. I know that my chances of getting back on the course is slim, but I am still clinging to those chances. Hoping that if I push my body hard enough and stick with the meds, then just maybe I’ll get back to Midwifery.

I am however, bearing in mind that the chances of me making a full recovery is extremely slim, and slight improvements may be as good as it gets. If that is the case, then I shall still be happy as every little improvement is a big step forward.

 

My big 4.

This morning I was feeling pretty down. All I could think was why me? After everything I have already gone through in my life, how was this fair? After feeling depressed for a few hours I started to think about the way I was looking at my life. At that moment in time I was looking at it all wrong. I was allowing my Dystonia to get on top of me, and I was looking at life from the wrong the point of view.

Instead of filling my head with negative thoughts, I started to focus on the positives. These are my 4 big positives.

1) If I didn’t have Dystonia then I wouldn’t have raised over £700 for the Dystonia society, a charity that provides fantastic support for sufferers.

2) Through this, I have brought awareness of Dystonia, to not only members of the public but also to members of the medical society who had not heard of Dystonia or seen a Dystonia patient before.

3) If I did not have dystonia, then I would not have had created this blog. This blog has not only raised awareness but has also put me in contact with some amazing people!

4) Dystonia has given me strength! The strength to go out in public in my wheelchair and not care what people think. The strength to stand up to the medical society. The strength to speak out and raise awareness! The strength to carry on fighting even when things are looking bleak. The strength and the determination to show the world what I can do. The strength to keep on believing that one day there will be a cure.

 

Neurologist Visit

Yesterday I went up to London to have my first consultation with my new Neurologist. Despite having read a ton of positive patient reviews of him I was still very nervous. It turned out I had no reason to be nervous!! He was a truly lovely man! He listened to all my explanations, brought on spasms so he could see what they did to me, and was very understanding.

He has decided to get me admitted into hospital were I shall receive intensive physiotherapy and intensive rehabilitation. He believes that with the right treatment there is a good chance I could  regain control of the majority of my body. He thinks its all to do with retraining my brain. I have no idea how long I shall be admitted for or when but I don’t care, their is a chance that I could return to being me!  If this treatment plan doesn’t get the results my neurologist is hoping for then he plans to put me into a different hospital which he said had a fantastic intensive therapy programme but had a much longer waiting list.

It felt amazing to have a Neurologist who actually cared, who understood how much of an impact the dystonia was having on my life. I left the consultation knowing that no matter what happened from now on the neurologist would be there for me to contact and I know that he will try his best to help relieve me of my symptoms.

I am now more hopeful than ever! I know there is a chance that it may not work, but the belief he had in the treatment programme was very reassuring. I cannot wait for it all to begin! I am rather curious as to how it all works and have a million and one questions to ask now! I cannot wait to throw myself into it!

There is always hope!

There is currently no known cure for Dystonia, patients are expected to accept this. Sufferers live in the knowledge that this is what their life will be like and they will just have to learn to get on with it. But why should we have to just accept it? I understand that acceptance is necessary to deal with this condition. Yet the way this acceptance is done is so negative! Why should we have to think oh great, this is it? Instead we should be thinking, Ok, so this is what I have, but science is always moving forward, you never know, they might find a cure sooner or later.

In my mind I am confident that I won’t always be this way, I remain hopefully that there will be a cure. It may not be for 10 or 20 years, but there will be a cure. They are already finding medicines and procedures that can help with dystonia, so they are already on the path to discover the cure. Without hope and confidence, a life with dystonia would be rather depressing! We should put faith in the scientists and researchers to keep on looking until they get the answer.

After all there is ALWAYS hope!!

The little Achievements

Yesterday I decided I would attempt to play my flute. I knew it would be a long shot considering I cannot pull a face without my face going to spasm, and I cannot hold things in my right hand without it going into a spasm. However I had read an article about music helping some people with dystonia and I figured there would be no harm in trying. After carefully practising holding the flute so that I was not supporting it at all with my right hand I gave it ago.

I started off by trying to play my scales. I soon realised that as long as I avoided playing notes in the higher register then my face took longer to spasm. I presume I must alter slightly my lip positions when I played the higher notes and this must be what caused the spasm. I carried on playing and my hand only went into spasm when I played two of the lower notes. I figure that I must have put some pressure on my right hand with these two notes, so I made a mental note to avoid playing those two. I then moved onto playing some basic pieces, avoiding the notes that I knew would set a spasm off immediately. In the end I was managing to play about a page before my face went into a spasm.

I am so happy! I never thought I would be able to play my flute again! It does not matter that I can only play certain notes, it is better than not being able to play at all.  I am going to try and practise my flute every day in the hope that I may eventually be able to play more and more before I spasm. I do not know if it will work but it is worth a try!!!

🙂

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