Tag: spasm

Posted in Archive, July 2013

Fantastic Consultant appointment

Posted on by dystoniaandme

My appointment with my Consultant today went amazingly well! I was so relieved that I did not have to argue with him, some of my questions he brought up before I could ask which was fantastic. He has offered to do my injections every 6 weeks – Guidelines state 12 weeks so this is a fantastic offer. I have left with an appointment booked for the end of the August!

He listened to all my concerns and questions and was very understanding. Knowing that I will be seen every six weeks is so calming, I feel like a huge part of me has breathed a sigh of relief as this will mean no more weeks on end of being in agony and my seizures should stay under control.

At my appointment today he administered injections to my jaw and neck, which was thankfully relatively painless, though my jaw did decide to go into an even more extreme spasm after the injection which was slightly amusing. I raised with him the issue that I am now unable to wear my glasses (which I am meant to wear for everything but walking – or in my case being pushed around) as when I do it causes a spasm around my eyes that makes me look sort of permanently surprised, he was unsure whether this was also related to my jaw spasm so has agreed that if this is still happening when I next see him he will do Botox around my eyes as well – this would be fantastic as it could help some of my eye spasm as well.

I spoke with him also about having IV treatment for Lyme Disease, he was a bit hesitant about what to say as he was unsure on what meds I would need and for how long. I explained that all I needed him to do was give the OK to my GP and that I would find a specialist Lyme doctor to discuss IV medications and length of time with. He has agreed to write to my GP saying Ok, which is fantastic. Now all I have to do is find someone to treat me.

The appointment overall was excellent and I really felt he listened to me. I am ecstatic that I have left with an appointment for six weeks time. I am going to be having an early night tonight as I am exhausted from todays trip to London, but I shall be going to bed an extremely happy bunny.

Posted in Archive, July 2013

Life Is What You Make it

Posted on by dystoniaandme

When I first got ill last summer I thought it was the end of the world, life as I knew it was over. What I should have thought is that my life is a bit like a snow globe and someone simply tipped  it upside down and gave it a good shake and that eventually everything would settle into the right place. Now it may have taken a while but everything is beginning to settle for example why I still hate Dystonia and battle against it, I also embrace the opportunity it gives me to make a difference.

This last week has been extremely busy. Something I am not used to and left me feeling exhausted and wiped out yesterday. I was also overjoyed. I had been busy, and not just in lots of hospital appointments kind of way but in a social interactive enjoyment filled way. It’s like a distorted mirror image of what my life was like previously and you know what I am happy with it!

I may moan that I don’t like what Dystonia does and that I hate the lack of control I have, but at the end of the day I am happy. Compared to a lot of people I have an amazing life. I am surrounded by loving people all wanting to help me, and I am so thankful for them.

This morning I had a fantastic long catch up with a good friend from school who I had not seen in awhile. It was great and it felt just like old times. This evening a lovely friend I lived with at uni is coming round for a cheeky chinese. I am able to be sociable and have a social life, and I am embracing every second of it. I have even started dating, something I thought would not happen for years.

I am doing things I thought I would never do again, that Dystonia had ruined. Now I realise Dystonia never ruined anything, it restricted me and all I needed to do was find the courage in myself to fight back and find ways to get my life back on track.

My life is my own, no matter how much my little alien tries to interfere, it is mine and mine alone.

 

Posted in Archive, June 2013

Stimulant Experiment Results

Posted on by dystoniaandme

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.

 

Posted in Archive, June 2013

Yesterdays Fantastic Session with my Personal Trainer

Posted on by dystoniaandme

I am not the type of person who likes to sit around all day doing nothing, I like to challenge and push myself. Sometimes I do not recognise my limits and I push myself to far but I would rather try than give up. Yesterday I had a session with my personal trainer. Despite feeling ill and having awful spasm for several days I decided to go ahead with the session as I felt slightly better. I am so glad I went ahead with the session as it was incredible.

At the start of the session I was a bit worried as we were going to try to do boxing. I was concerned that my arms would act up and that I would have a lot of spasms, however I will never let my Dystonia stop me from at least trying to do something, because if you never try then you will never know what you are capable of. It was the most fantastic session as my hands did not spasm once! I had a teeny tiny arm spasm that wore off very quickly, but I don’t really count that.

I still feel like I am still on high from the session, it was extremely therapeutic as well as a good work out. I am completely astounded at how well my limbs behaved, it has filled me with joy as it was a fantastic achievement. My arms were not to great later in the day but I did not care as I felt like I was sitting on top of the world.

As an able-bodied person I never tried boxing, I brushed away from the idea of it, declaring that my lack of coördination and my ‘girlie’ attempts would be embarrassing. So I am actually rather thankful that because of my Dystonia alien I got to try boxing out. It was an amazing experience, and I don’t think my punches were ‘girlie’ at all. Over the last few sessions I have realised that I am stronger than I thought.

I feel extremely lucky to have found a personal trainer who is not scared of my condition and who comes up with inventive ways to get me working out e.g using a crutch with him putting resistance through it to do a chest press. Without his fantastic help I am sure that my spasms and my body would me in a far worse state than what they are at the moment. His work outs keep my body moving, which helps give me that extra bit of mobility. His help has given me such confidence in myself and my ability to deal with my spasms. I never thought I would enjoy working out, unless it was on a horse, and now I love it. I love my daily work outs and I am always looking forward to my weekly session.

I know each Dystonia patient is different but I would defiantly recommend looking into a personal trainer to see if they can help you. You may or may not benefit from it, but if you never try you will never know.

Posted in Archive, May 2013

Have we found stumbled across the cause??

Posted on by dystoniaandme

Whilst sitting in a waiting room the other day my mum stumbled across an article about Lyme Disease. Lyme Disease is carried by some ticks and can be transferred via a bite. Later that day my mum did some research about the disease after remembering that I had been bitten by one when I was six up in Scotland, and the area is known to have ticks carrying the disease.  When reading through the symptoms she found that the majority of medical issues I have had through out my life fits with Lyme Disease.

Lyme Disease can cause a majority of problems. In late stages of the disease neurological problems can occur such as muscle spasms, memory loss, twitches etc and can cause Dystonia. I was never tested for Lyme Disease at the time as my parents did not know of the condition. The tick was attached to me for 24 hours and I developed a large rash afterwards. Testing for Lyme is unfortunately not accurate. The tests can result in many false positives and false negatives, some Lyme patients have been tested over 5 times before they got a positive result. The test is only about 30% accurate.

I visited my GP this morning with my mum to discuss this with him. We went armed with information from medical sites, and prepared to fight for a test. Amazingly we did not have to fight! My GP listened to us carefully and decided that instead of ordering the blood test he would start me on a high dose of oral antibiotics instead. I am to take these for a month and see if I get any improvement.

From what I have read if you have late stage Lyme Disease IV antibiotics are the best line of treatment and this goes on for several months. Often antibiotics do not show any positive results for months, in some cases it has taken up to a year. I know that I am unlikely to have any improvement on just one course of antibiotics and that I may have to fight to get another course of them, but I am extremely thankful that he has agreed to put me straight on them.

The information I have read is extremely interesting and whilst there is a chance that I do not have Lyme Disease and that is just a coincidence that my symptoms through out my life fit so well, I cannot help but hope that we may just have stumbled across the organic cause for my Dystonia.

 

Posted in Archive, May 2013

Inquisitive Nature

Posted on by dystoniaandme

Two of the most common questions people ask each and every day are how and why. Why do people get ill? How do we know that colour is actually green? Why is it always me? How does this work? Sometime we are not seeking an answer when we ask these question and the question has been asked in rhetorical way e.g why me. However the majority of the time we are seeking an answer. As humans, like the majority of animals, our own nature makes us inquisitive, we like to know the ins and outs of everything and anything, but if you put us in a situation when we cannot find an answer, well then we become fixated.

Which is exactly what is happening to me now. I am completely fixated on what caused my Dystonia, what turned my whole world upside down gave it a good shake and then righted it with all the pieces jumbled up! The logical side of me knows that the chances of me finding out why is extremely small, yet still I try to work it out. I sift through pages and pages of information grasping at any small shred that could contain the answer I’ve been looking for.

No matter how often I tell myself that an answer is not going to make much of a difference, I still continue my search. I am almost amused at myself for how desperate I am for an answer. For even when I find the answer, other than it giving me some piece of mind, it is not going to change much.  However until the doctors agree to help me, I know that I shall keep looking, so that if the day comes when there is no answer, I can sit back and think well at least I tried.

For now though I am going to try to reign in my inquisitive self, and remind myself to spend less time looking for something I may never find and more time enjoying the wonders around me.

Posted in Archive, May 2013

Oromandibular Dystonia is Back

Posted on by dystoniaandme

Today has been one of those days where I wish I could have slept through it. My jaw has been trying to spasm for about a week and today I woke up with it in a full-blown crazily painful spasm. I manage to deal with most of my other spasms fairly well, however due to the amount of pain my jaw causes I find these spasms very difficult and exhausting.

I always try to carry on with my day as normal when my jaw spasms as I do not like to give in to the pain, however today has felt like a real struggle. On top of this my body in general has acted up today, with my eyes being the worst resulting in several prolonged periods of functional blindness due to either my eyelids clamping shut or my eyes spasming upwards in their sockets. Despite this however, I still did all my workouts which I am very happy about!

I saw this quote earlier and it made me realise that on days when the pain is too much and I am exhausted, it is ok to get upset/cross or sleep through it because you don’t have to be strong 100% of the time, you just have to pick yourself up and brush yourself off afterwards.

Even though it is still several more weeks until I can have any more Botox treatment done to my jaw and neck, I am still going to let my consultant know so that he can book me in for my next lot of treatment. I am hoping that tomorrow my body gives me a little bit of a break, so that I can feel a bit more alive than I have felt today.

Posted in Archive, May 2013

Sleep & Dystonia

Posted on by dystoniaandme

One of the things I am struggling with lately is getting to sleep and staying asleep. When I am tired my spasms tend to get worse, which makes getting into a comfortable position to go to sleep in is rather hard. Previously when going to sleep I would lie down in bed fully stretched out, however I can’t do this any more and this is proving to be an issue.

One of the symptoms I am struggling with at the moment is in my legs. I have a constant tugging sensation along with pain in my knees and thighs, which I seem to only be able to relieve by pulling my legs up. Although this does get rid of the painful sensations it certainly lessons it, however I then find it extremely hard to then straighten my legs back out again. Some nights I have had to go to sleep with my legs crossed. The pain in my legs along with the current pain in my neck caused by my new neck spasms is really impacting on my sleep.

Sleep is an important part of dealing with Dystonia. Having your muscles spasm constantly on and off through-out the day is an extremely tiring experience, which leaves you exhausted. I have often taken naps in the day just so that I have some energy to carry on fighting against the Dystonia with. Dystonia normally disappears whilst you are in a deep sleep, however when in a light sleep the spasms can appear. At the moment due to pain I am finding it extremely difficult to get into a deep sleep, therefore I am constantly woken up in the night due to spasms. This leaves me feeling exhausted still when I wake up and starts a vicious cycle.

At the moment I have taken to going to sleep with a hot water bottle under either my feet or knees to try to relax my legs, and a heated lavender wheat bag around my neck. The combination of the two is thankfully providing me with enough temporary relief to enable me to drift off to sleep. I have debated taking sleeping tablets however I am unable to do so with the medication I am currently taking.

I am hoping that by increasing the number of times I meditate a day and by starting to have reflexology done that I may start being able to sleep better. Only time will tell if this combination will help. So I shall keep my fingers crossed.

 

Posted in Archive, May 2013

Simple Lessons

Posted on by dystoniaandme

Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up doing the splits! Thankfully the muscle relaxant that my GP put me on has helped and has slightly reduced the frequency and intensity of these spasms.

Earlier this afternoon my whole body decided to spasm, it was slightly painful and was not the most comfortable position to be in, but despite that I managed to laugh through it with my mum. Knowing that the spasm would eventually release was a big comfort and made it more bearable. I have included some pictures of the spasm below, in them you can see that my eyes, neck, arms, stomach and leg are all in spasm.

In today’s culture people often seem to want to focus on what we cannot do rather than celebrate what we are able to do. Even the term Disabled focuses on it. I don’t like being labelled  but if I have to be then I would rather be termed as Differently Able, as I am capable of doing the same things as any body else, it might just take me longer, I may even do it slightly differently but at the end of the day I can still do it!

One of my symptoms causes me to go blind. My eyes go into spasm and my eyeballs roll upwards in their sockets. Being blind on and off has taught me to appreciate the beauty that surrounds me in daily life. I previously took my sight for granted, the day I went blind for the first time terrified me, I was having a big panic that I would not be able to read again. Now when I am able to read I appreciate the ability more than ever before. Control of our bodies and good health is such a precious but fragile gift that people tend to abuse. We need to open our eyes to the world and learn to appreciate what we have. Society needs to understand the gifts that senses such as sight brings us and learn to focus on the positive side of things.

I could easily allow myself to drown in a pool of negativity but by focusing on the little things in life like being able to see, and by pushing myself to achieve what ever I set my mind to, I am able lead a positive life. I have my moments of being down, just like everyone does but I wont ever let having Dystonia beat me.