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Posted in Archive, September 2014

Excitement and Nervousness

Posted on by dystoniaandme

Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

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Posted in Archive, August 2014

Emotional Turmoil

Posted on by dystoniaandme

Currently I feel like I am a whirlwind of emotions – confusion, terror, anger, helplessness – are to name a few. From the 1st of September almost daily I will get another test result back from the private hospital, and then on the 10th I shall attend to see if they have decided to treat me or not. If they do agree then I cannot even begin to describe the relief I would feel at finally getting the correct treatment. But it would be very bittersweet relief as I would have to somehow fund this treatment.

Yet the panic I am already feeling about finances is nothing in comparison to the terror I feel about having to deal with the spasms caused by my Lyme Disease on top of my Dystonia again. I know that I have dealt with it all before so I CAN cope again, but I don’t want to. The thought of it sends me running for the hills. When my hands spasmed before I frequently used to tell my mum that I felt like I had pulled my fingers out of joint, I’ve recently been diagnosed with Ehlers Danlos type 3, which makes it highly likely that I was subluxing in my fingers. To be frank I am scared of the extra amount of pain that untreated Lyme Disease will bring. At the moment with oral treatment it is dulled down, manageable. Which has enabled me to learn to cope with Dystonia and the pain that it causes. I don’t want to go back to being rushed by ambulance in to hospital every month. 

I have enough oral antibiotics to get me through to the middle of September at the moment. From our recent experience of coming off the antibiotics and the deterioration that that caused I am loath to go through it again. Its quite selfish really as I know a lot of my fear stems for not wanting to lose my hands again. I love being able to do simple activities such as brushing my own hair. It is a sign of independance and I get such satisfaction from being able to do tasks such as this.

The majority of my Dystonia is well controlled with Botox, and Benedict is not inflicting too much pain at the moment. I just want to maintain/improve my condition. In the meantime I shall keep my fingers crossed that the private hospital wants to treat me, and wish to the NHS fairy that they open their eyes and acknowledge chronic Lyme, and start treating us sufferers properly!!

Posted in Archive, June 2014

First Yoga Session

Posted on by dystoniaandme

Today I had my first one to one session with a local Yoga teacher. I had been inspired to give this a go after hearing a number of other Dystonia sufferers saying they managed to do it and enjoyed it. The teacher was lovely, she believed in completely looking at my body as a whole and worked out what I could do, not what I couldn’t! This to me was important as it took away the feeling of being disabled. For me interestingly enough I found that my hypermobility was my main issue more than my Dystonia during the session, as I had to work on controlling my flexibility so that I did not over flex the pose.

Research has shown that the benefits of yoga for movement disorders include improved strength, flexibility, balance etc. This is something that I am working towards (minus the flexibility) as due to my muscle spasms I am aware that the strength in places like my legs will not be as good as they were before I was ill. I never had a sense of balance, so if I can gain that then I’m not going to complain!

I found the whole experience to be actually quite relaxing. The fact that my Dystonia only played up a handful of times meant that I could really enjoy the session and appreciate what I was doing. My teacher was surprised at how much she could get me to do, this pleased me as I felt like I was achieving something. She explained as we went along what each pose would help with and what muscle it would stretch. By the end of the session we had a whole routine put together that I will do for half an hour every morning. I am hoping that by doing regular Yoga my muscles will get used to being stretched often, that way when it next does one of its extremes spasms – like the one that damaged my knee ligament – I won’t do as much damage to my body and I won’t be in as much pain. As much as I hope I never have to deal with that sort of extreme spasm again I know there is a good chance I will have to. I am extremely interested to see if this will help.

Posted in Archive, May 2014

Little Things

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The last week and a bit I have had a bad cold, which would normally be fine but as I have mentioned before Dystonia tends not to react well with other illness even if they are just small things like colds. This has resulted in a week full of a variety of spasms and a handful of pain triggered non epileptic seizures. My jaw has tremored quite a lot, I can only presume that the pressure in my sinus area has aggravated it and this is why it has played up more than normal. This in particular has caused the most pain as often my tongue gets bitten in the process.

In spite of feeling under the weather and my Dystonia alien being more mischievous than usual I managed to sit outside the house and enjoy the sunshine. This may sound rather simple, but it involves quite a maneuvering process as our house is not very wheelchair friendly. I normally don’t try to get out the house unless I am actually going somewhere as its hard to do and rather painful.To actually have achieved this without ending up in a hospital A&E department was extremely satisfying. I love being out in the sun, even if it is just for 20 minutes, it’s a nice change from being inside. Even though it’s a very simple achievement it is one that I am celebrating.

Posted in Archive, May 2014

Alternative Coping Methods

Posted on by dystoniaandme

Today is the last day of Dystonia Awareness weeks, which is most likely a relief to all the lovely people who are signed up to receive email alerts when I post a new blog as I’ll be going back to posting a couple of times a week. It has been amazing seeing how many people have joined in with Dystonia Awareness week, Thunderclap was seen by over 6 million people which is incredible!

In many of my blog posts this week I have mentioned treatments such as Botox injections, muscle relaxants and Deep Brain Stimulation, however none of these treatments can guarantee relief and are not always accessible, so I wanted to discuss some alternative ways of coping with symptoms. Heat is great for relieving muscular aches and pains that can result from spasms, wheat packs, back wraps and microwaveable slippers are all great products and I use at least one of these three several times a week. TENS machines are also great, I don’t know what I’d do without these. I never go anywhere without one in my handbag and towards my Botox dates they often help keep my neck spasms bearable.

If you can afford alternative therapies I would highly recommend trying Reflexology. I found before having regular treatments that I could not sleep well at night as the spasms would keep me up. This turned into a vicious cycle as I was then too tired to handle my spasms well in the day. Now I find having regular Reflexology treatments enables me to have several good nights of sleep a week which does me the world of good as it means I can handle whatever my body throws at me in the day better. I also find burning scented candles or essential oils helps me relax (and after putting them out) get to sleep easier.

Everyone finds something different that will help them, for some people touching certain pressure points will relieve spasms to a certain extent, in others hot or cold therapy does. For me as I mentioned above heat, TENS and Reflexology are what keeps me ticking along in between Botox appointments. Its worth experimenting and trying to work out if anything particular helps you.

Posted in September

Cervical Dystonia

Posted on by dystoniaandme

Cervical Dystonia is when the spasms are in the neck, this can be quite painful and can result in awkward neck postures.Generally the spasms will cause the head to pull to one side, backwards or forwards. In my case my head pulls down towards my left shoulder but with a forward twist. I also have a no style tremor to my neck. It is the most common form of Dystonia and according to The Dystonia Society is currently estimated to affect around 18,000 people in the UK. Like most forms of Dystonia if it occurs in adulthood then it will hopefully remain in just that part of the body.

The most effective treatment for Cervical Dystonia at the moment is regular Botox injections, though how well this work varies from sufferer to sufferer. I receive regular Botox injections to both sides of my neck and it has had a massive impact and helps me keep my head fairly straight  whilst the Botox is working. Medications such as muscles relaxants can provide people with some relief as well. Pressure being applied to specific points around the neck and face in some people is beneficial but this is not the same for everyone.

This image demonstrates some of the positions the spasms can pull the head in to.

Posted in April 2014, Archive

Disappointed & Disheartened

Posted on by dystoniaandme

Yesterday I had my appointment up in London with my neurologist. I had been really looking forward to this appointment, as I wanted his opinion on a couple of things. Firstly on my new leg spasm and if there was any treatments he could suggest that could help it. I am taking 45mg/ml of Baclofen a day for it and whilst this is controlling it, it impacts my cognitive ability greatly. I am able to hold a conversation but anything that requires me to start actually using my brain and answering questions is too much and I am unable to do so, I end up relying on my mum or whoever is with me at the time to do so for me.The second thing I wanted his opinion on was on a type of splint that my physios are arranging for me to try called Second Skin. It’s a lycra based splint that provides  feedback to the brain, and it seems to work either really well or not at all.

For my leg he had no idea what to do other than keeping me on the Baclofen.  He is referring me for more intensive physiotherapy to see if that will help but other than that he was lost for ideas. So I guess all we can do is hope that these new splints when I try them work, because otherwise I do not know what to do. In regards to the splints he did not say too much, he said they could do no harm which is always good to know and that they may help but didn’t say much more on the subject.

The main reason I had been looking forward to yesterday’s appointment is that in a letter I had received from my neurologist the other week he had stated in it that he hoped to have an answer for me about my IV treatment for Neurological Lyme Disease by the time he next saw me. I took this as a positive statement when I read it as recently in conversations with my doctors it had all been looking like it could go ahead if someone could be found to oversee it. Sadly this is not this the case. The hospital that originally said this can be set up if you find a neurologist to oversee it, is now saying they want more evidence that I have Lyme. By evidence they mean a positive Lumbar Puncture result.

My neurologist has said that he can arrange for me to have a Lumbar Puncture very quickly and it is up to me whether or not I agree to go through with it. He is not very happy for me to have one done as it puts me at risk of developing new symptoms or my current symptoms getting worse. There is also the problem that I cannot actually guarantee I can stay still due to body spasms so for them to realistically be able to do the Lumbar Puncture I would have to be under a General Anesthetic. The tests for Lyme Disease are also extremely unreliable giving false positives and negatives, and with a years worth of oral antibiotics in my system its more likely to come back negative.

I started taking oral antibiotics for Neurological Lyme Disease this time last year, and we have battled for the correct treatment which is IV antibiotics for the last year. For a whole year I have been put under the impression that I would get IV it would just be a bit difficult to set up. Now I am extremely upset. All I have done since I left the hospital yesterday is cry on and off. The IV would not cure my Dystonia but it would cure my Lyme, and who knows how much of my body is that! I had all my hopes pinned on this!! I am terrified that now when they take me off my oral antibiotics, which I know will happen soon, that my symptoms like my hand spasms, that improved may come back. I could not cope with that!

My plan today is to phone a local private hospital that I know treat Lyme Disease and see if they will consider treating me without the Lumbar Puncture. If they won’t then I will have the Lumbar Puncture done as I would rather risk it and hopefully get treated then spend my whole life wondering what if I had done it.

I am feeling very lost, and sad right now and I know things can only get better. It’s just hard after spending a whole year having all my hopes pinned on this treatment to have it snatched away. On a positive note I did get my injections done, and he was so lovely and apologetic. I am lucky that I have him. I  just have to struggle on.struggle

 

Posted in Archive, March 2014

Neurophysiotherapy

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Today I had an appointment at Jacketts Field Neurological Centre for my neuro-physiotherapy assessment. I was slightly worried as I had heard very mixed reviews about the unit but was doing my best to go with an open mind. As it was an assessment I knew a lot of the time there would be spent answering questions verbally e.g how does your spasms affect your ability to swallow or do you have any walking ability? However some of it was going to be physical, this left me concerned as my body is currently in meltdown mode due to lack of Botox so moving about could be painful. Luckily my mother agreed to come with me which put my mind at rest, if the worst did happen and I had seizure after seizure and an ambulance needed to be called, I would be safe and my mother would be able to instruct them on what needed to be done – however all that worrying was for nothing as I didn’t have a seizure 🙂

After answering a lot of questions and having a good laugh with the physiotherapist, it was time to demonstrate just what my little Dystonia alien does to my legs. Figuring I would only have to take two or three steps with my walking sticks, plus the physio and my mum holding me up, I happily stripped off my splints and stood up. This promptly set off my spasms in my legs and the next things I knew I was on the floor! I had not even taken one step! Benedict obviously had been enjoying playing twister with my face and got his knickers in a right old twister when asked for my legs to join in…stroppy sod! As much as my body is now a little sore at least it gave the physio a good idea of what exactly I am contending with.

Due to how much my body does, the assessment did not get finished even though we majorly ran over time! So we have had to book another assessment in! I am really looking forward to this.

On a quick note this Saturday I am attending my local Dystonia Society Group meeting, this will be this first one I have been to and I am so excited to meet other people with my condition!

Posted in Archive, March 2014

Oromandibular Dystonia

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Since last Friday my Oromandibular (jaw) Dystonia and tremor has been rather bad. These spasms leave my jaw extremely distorted and the pain is constant. Unfortunately my Botox is a week later than usual, my appointment is not until the 18th of this month. Even though I know it is just under two weeks to go now, I am finding it hard to function due to pain.

However there is always a positive and I refuse to let this be a purely negative blog post. Despite the spasms that were severely affecting my jaw and neck last Friday I still managed to get into college. I cut down my workload as I knew it would not realistically get done without exhausting my body, but I managed to get in, which surprised me as I did not expect to in the state I was in.

It never ceases to amaze me just how exhausting pain is. Today my jaw has insisted on tremoring a lot. I use a teething dummy to protect my teeth and tongue, at the end of my last tremor however I was not quick enough at removing the teething dummy from my mouth, with the way my jaw then spasmed it got slightly stuck…I cannot even begin to describe how much this amused me, it took a whole hour before I was able to pry the dummy out from between my teeth. It really was hilarious.

It is moments like these that are vital. Dystonia is hideous. The pain that I am going through on a daily basis is enough that all I want to do is curl up in a ball and sleep until I can get my Botox injections. But sleeping won’t raise awareness of the condition, hiding away won’t beat the condition. Moments of pure hilarity are part of what makes Dystonia bearable and I am so thankful for these moments!

Posted in Archive, February 2014

Feeling Good

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Last time I posted I felt that I was balancing on the knifes edge and was feeling pretty negative, well I’m feeling darn good today and I plan on enjoying it. My legs have not been as bad the last couple of days, the swelling in my knees is going down and the pain in them is tolerable. This improvement has made such a mental difference as the pain was really beginning to get me down.

Having my pain levels go down has made the biggest difference as it is the pain that I struggle to deal with the most. I can cope with my body spasming, tremoring and getting into unnatural positions but the pain is what I can’t cope with. Normally it would be my jaw that causes the unbearable pain, so at least having it in my knees made a change.

I am now on half term, which mean no college and no riding 😦 however I know that it is best just to let my body rest and recover this week, before I throw myself back into everything head first next week. On a positive note I made into college last week!! After being too ill to go in the week before I was determined to drag myself out of bed and into college – trying to get dressed whilst my legs where on strike was interesting but  I managed it and it was the best thing I could have done. I know that I tire very easily these days but doing normal things like college make me so happy.

As I have mentioned before my cousin David and his friend Sam are running the London marathon for The Dystonia Society in April. I woke up to see a small article had been written on them in their local newspaper (Somerset). Its so positive to see awareness of Dystonia spreading!

I often say that I wish I could see inside my brain so I could have a better understanding of what exactly is going on. As other than all the medical jargon I have no idea what exactly it is doing…this picture describe it perfectly and makes me smile.