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

Posts tagged ‘Neurological Disorders’

Would You Apologize For Shivering? Didn’t think so!

Every now and then I receive wonderful comments/emails/tweets from people expressing how reassuring it is to see me post pictures of my spasms. These messages often include phrasing such as “I don’t know how you do it, it’s very brave” and “I wish I had your confidence”. I don’t talk about this much, but when it comes to my spasms my normal confident self generally disappears. The stares in the streets, the whispers of “look at her face!” and people’s general ignorant remarks “Could you please stop or do it elsewhere” (usually in reference to my arm spasms) have caused me countless hours of upset. I don’t believe in wasting hours on being tearful over something I have no control over though, I hope the pictures below show that while hard, life as a spoonie can be fun.

               Does this splint blend in?  Laughter; the key to making the most of the spasm free moments!

In many ways I’m your stereotypical 23 year old, I take way to many selfies, own far too many shoes and grew up head over heels in love with books; a passion that has resulted in me wondering where to put them all now I’ve run out of shelves! I have all the insecurities that is normal of somebody my age: I am overweight, I do not care enough about fashion as I’d rather be comfy, and don’t even get me started on my complexion. It’s tiny insecurities that are perfectly normal but when combined with my spasms often results in self-deprecation. There are days when I can walk about not particularly worried about some of the smaller spasms I experience, and then there are days when I’m hyper aware and embarrassed when in public, not just because I need an aid such as my wheelchair or stick, but because my eyes are spasming causing functional blindness, and my jaw is contorting to the point of dislocation; this is all whilst my left arm is casually attacking anything in range.

When confronted by people asking me to refrain from spasms, I try to politely explain that it’s nothing I can control and apologize. But why should I. Should you apologize for shivering when cold? It’s a natural reaction that you would never dream of uttering apologies for. So why then should I issue out apologies for something that is just as natural. Sure, everybody and their friend may not experience it, but it’s my brain firing off incorrect signals that are just as natural as your shiver or yawn.

I live in pain every day and never know what to expect from my body. Yet people judge me for this. If all I manage to accomplish that day is a shower and pulling on a clean pair of pyjamas then who cares, all that matters is that I achieved it, other days I am capable of so much more. But just because I have had the energy and ability to carry out a task at that point in time, does not mean I will be capable of performing the same task five minutes later, let alone the next day.

I try to live every day ignoring the sideways glances and stage whispers, enjoying everything I am fortunate enough to experience. These days I try to capture my spasms on camera, as after all they are just as much a part of me as the functioning parts of my body. So when you are say I’m brave and ask how I cope the answer is quite simple. I’m not brave, I am stubborn, Dystonia and my host of other conditions will not stop me from living life. Coping is a different matter altogether. Some days it’s as easy as breathing, and laughing feels like the answer to everything. Other days curling up in my bed escaping into books where the words provide comfort and distraction is all I can do.

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Rocking my wheelchair!

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Dystonia; Becoming A Student

When you hear the word university student what do you picture? I’m sure that many of you conjure up an image very similar to my own. One of students sitting in a small dingy  flat knocking back a stomach churning concoction from a mix as part of a drinking game; or stumbling back, shoes in hand, giggling from yet another night out. My ideas are based on experiences from my year at uni in 2011/2012. Whilst planning my return to university my mother and I have had many discussion on student life and how sensible I’m going to have to be this time round.

I have struggled to get my head round the fact that frankly I do not have the stamina I once did. My medication, spasms, and pain levels all have an impact. Now that’s not to say I can’t have a night or two out. I just cant do it back to back every night of the week. If I did I would be a spasming wreck and back in the hospital in no time. Whilst mentally I am the same old Becca, physically I am much weaker and more disabled than when I was last at uni. When I was last a student I was not battling Dystonia, I did not know then what it was like to lose control of your body like I do now. Although my condition is well controlled, it’s still up and down. I know when I’m on muscle relaxants I can’t drink, so my body will force me to be sensible every 6/7 weeks when my injections are due. The rest of the time will be down to self-control, and learning what works for me. Prioritising is key to making sure that I am well enough to attend lectures, and doing the studying that is required etc.

I have not lived any element of a student life since becoming ill. It will be a big adjustment process, which I will have to catch on to quickly. As my moving day creeps nearer (24 days) my nerves increase. I’m anxious to take this next step but nervous at just how much of an impact Dystonia shall have. However I am aware that as usual I am worrying over something that is outside my control, there is nothing I can do but enjoy my time at university and handle my spasms with my medical team as they come.

The Beast Rears It’s Head…

and I don’t mean Beauty and the Beast style. This Beast of mine, is not going to transform into my Disney fairytale prince charming. Sitting in the Drs office earlier this afternoon, the Dr uttered words I had hoped I would never hear again. Complex Regional Pain Syndrome. The newest diagnosis to my add to my growing list, but not new to me. I have battled and conquered this hideous beast before. It took months and months in hospital. I never thought I would have to deal with this condition again. Last time it was in my leg. Now it is in my shoulder.

Emotionally I am numb, exhausted I know from the little sleep I have got due to pain. Part of me wants to draw the curtains, grab a pillow and just cry. But what good would that do me? It wouldn’t fix me, it wouldn’t take the physical pain away. I made the mistake last time round of avoiding everything that inflicted more pain, such as trousers (I lived in shorts), I couldn’t bear bed sheets, etc, anything touching me was agony. By avoiding touch I made the condition worse. I’m forcing myself to lie down on my back, to wear clothes that hurt, to put my handbag on shoulder even if only for a moment. By doing these things repeatedly hopefully my brain will relearn, again, that all is well.

The Dr went through my meds and was a bit stumped, as medication that he would have put me on to try to treat the condition, such as Gabapentin, I  am already on the maximum dose of. We therefore agreed to trial Sertraline on the lowest dose. It may or may not work, but I’ll try anything right now.

In the meantime I’m going to close my eyes, and breath. Things could be worse after all. I defeated this beast once before, and I’ll defeat it once more.

 

 

 

 

Out of Control

I’m not sure where to begin. There is so much pain and if I am quite honest it is making everything extremely cloudy. After months and months of being seizure free I think today I had one, the memory loss that I seem to be experiencing confirms it. The devastation this causes is hard to put into words. I’m scared to leave the safety of my bed in case I have another, as one fall will be all it takes to pretty much guarantee an ambulance trip to the local hospital. After spending the last two days there (one planned trip, one unplanned), I don’t particularly fancy going back again so soon.

One of my Dystonia symptoms is a strong twitch/jerk, in my left arm. It flings my arm out rather violently to the side, it is completely out of my out of my control. This has been controlled by 3600mg of Gabapentin for the last two years but this no longer seems to be enough. It started off with just my shoulders jerking, I should have gone to the Drs then but instead I ignored this symptom. It’s got to the point now where my arm is flinging itself out to the side every few minutes with such a force that it causes horrendous pain when it collides with something, which it often does. I have had to resort to wearing a splint on my wrist to protect it as it had become rather swollen from the several times it has hit door frames, walls, hospital beds, etc.

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My GP has decided to up the amount of Topiramate I take, which is an old antiepileptic medication to see if that will help. I take Topiramate to control my migraines but as my GP pointed out old antiepileptic medications such as Topiramate and Gabapentin often have many uses. So fingers crossed it works as I’m really struggling to cope. In all simple truth I just want someone to hug me but as I told my mother earlier I’m to scared to let her do so incase I hurt her.

I’m scared of my arm, the pain its causing and how my body irrationally responds to pain. This situation is impacting my life already – I daren’t walk into a shop now I’d break their stock – and I refuse for my life to be put on hold yet again! I really hope my little Dystonia Alien can hear me. I hope he is trembling in his tiny boots. As eventually my fear will give into rage, and I sincerely hope that the Alien has the sense to uproot and leave than do battle with me yet again.

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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.

 

Short and Sweet

Todays blog i am going to keep short and sweet…you can all breathe a sigh of relief ;-p.   I want to start by saying thank-you to all of you who have nominated me or endorsed me for a WEGO Health award, it is extremely touching! Below are some links that I think are really worth checking out! Happy reading.

I was doing my usual surfing of The Dystonia Society’s website and came across the link to The Global Dystonia Registry. This is a huge international database of Dystonia sufferers that scientists and researchers are using to understand Dystonia better. The more sufferers that register themselves on the database the more research can be done, and that can only lead to a more optimistic outcome for us all! For anyone who wants to know more here is the link to The Dystonia Society’s page which explains a bit more http://www.dystonia.org.uk/index.php/about-dystonia/global-dystonia-registry .

This year is full of exciting things, one of those is the London Marathon which my cousin David and his friend Sam are running in, to raise money for the Dystonia Society. I admire them for doing this, despite the weather we have been having, they have both continued training out along muddy canal paths and fields. They log their progress on Facebook and twitter so please follow them as they train to raise money for such a fantastic cause!

https://www.facebook.com/Davidandsamrunthelondonmarathon?fref=ts

https://twitter.com/DavidandSam2014

Unpredictable but Not Alone.

Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person’s symptoms can vary from one day to another“, NHS Choices. This quote sums up Dystonia quite nice and simply I think. It is extremely unpredictable, which makes it hard to work out what you are capable of doing one day to the next, if you guess wrong the games over for the day. In my case guessing wrong would result in me putting my spasming body to bed and hoping that a long nap will help calm my symptoms down…but thats providing the spasms don’t stop me from getting to sleep. I always try to make the most out of each day, to accomplish as much as I can incase the next day results in being unable to move from my bed. However trying this can often backfire on me and ensures that I spend the next day in bed, but sometimes if I’m really lucky I get away with it for a day or two. These are the days I love, as on these days I am beating my Dystonia – not permanently, but even an hour of winning is a huge achievement.

Dystonia symptoms and it’s impact varies from person to person. A quick glance at the Dystonia Society’s list of type of Dystonia and their symptoms gives you an idea of just how wide a range http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia . Due to this it does not surprise me that Doctors understand so little about the condition, why patients have little choice but to fight tooth and nail to find a treatment that works for them, to find a doctor who will listen. Through the power of the internet I have slowly got in touch with more and more sufferers, and even a handful of curious doctors. The sufferers amaze me. I hear the stories, and count myself lucky that I have a good support network, something many do not have. We all band together to raise our voices to get Dystonia out there, and it’s working. Slowly but it’s working. The emails I get from Doctors around the world prove that.

Yesterday at Choir we were practicing Christmas songs, which got me thinking of all the things I was thankful for. As much as I wish nobody had to suffer from this hideous condition, I am so extremely thankful that there are others out there. That those of us lucky to have found each other can support one another, give advice and a listening ear. Without being in contact with these amazing people, I honestly wonder how I would cope. I am also thankful to those of you who read this blog, and often share it with others. Since becoming ill I have become determined to become an advocate for Dystonia, to make my voice heard, and bring awareness to the condition and what it is like to live with it. Looking at the comments you lovely people leave me, the shares, likes and statistics  brings me such happiness, as it shows me just how far my voice is being heard and assures me I am on the right path.

On one last note, I promised a while ago to upload photos of the amazing women who raised money to buy me a bath lift. I have attached them underneath. I feel incredibly lucky to have met such generous and caring women.

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Basking in Positivity

The last few days have been truly fabulous! I got into college to study a Level 3 diploma in reflexology, had a meeting with the learning support team who were completely wonderful about my Dystonia, and today I have been out for lunch with two of my best friends who I had lived with at uni.

My course starts in just under two weeks, and at first will be only be for 3 hours one evening a week and then progressing to each saturday as well when we start working on clients. It is nice to have found something I can be passionate about and to study towards. Being able to study Reflexology is also rather reassuring as I can go on to work from home. I have spent months thinking I would never have a carer, but since taking the antibiotics which have calmed down my Lyme symptoms, I feel empowered and full of hope.

I was thrilled to go out to lunch with my friends this afternoon. Having lived with them at uni, I miss them a lot. I got a taxi up with one of them to the Beefeater, which was a good experience. Normally my mother or a family friend takes me if I’m going  out somewhere, so it has given me confidence knowing that I am able use a taxi service with ease. I felt like a ‘normal’ person and did not feel extremely conscious  like I normally do when in a restaurant.

Having everything go right the last few weeks and has been amazing, I have not had to fight to get what I’m after, which has been a nice change. I feel extremely relaxed. My little Dystonia alien is by no means letting me forget he is there, but I’m giving him no attention and basking in the positivity that is filling my life currently.

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Amazing Consultant Appointment

Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.

He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.

I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.

I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.

Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.

 

The Many Wonders Of The Brain

The human body is an amazing thing, it is a complicated being that relies completely on the brain to be able to function.However if there is one tiny glitch in the brain then dramatic abnormal changes occur. I am completely fascinated by my brain, I would love to have electrodes on my head for a few days to monitor it, so I could get a glimpse of what my brain is doing wrong.

Take yesterday for example, I don’t remember the day at all, but my mum found me unconscious  due to my Non Epileptic Seizures in a chair, where I remained unconscious for a few more hours. My poor mum had to spend five hours in my room looking after me. Due to my lack of memory we have no clue what exactly caused me to started having seizures, when I came round I apparently complained about my knee a lot, however my knee other than being a bit bruised is fine today. It is times like this that I would just love to know what exactly is going on in my brain. Whilst Dystonia is extremely painful it is also utterly fascinating.

I consider myself to my extremely lucky that Dystonia is not fatal. I may moan and complain about living with it, but in comparison to so many other people on this planet I am considerably better off. I simply have a misbehaving alien bouncing around my brain pulling strings to make different parts of my body react or knock me out.

On the 28th of this month, I am going away to the Cotswolds with my family. I am extremely excited as I have not been on holiday in a few years. Even though my spasming body will still be with us it will be fantastic to have a change of scenery. I plan on relaxing, taking lots of photos and enjoying every single second of our holiday. I am now on a countdown to the 28th!

This week my blog has received well over a thousand views! I would like to say a humongous thank-you to everybody who is reading it. I hope it is raising awareness and helping others!

 

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