Recently after seeing my neurologist a decision was made for me come off of the majority of my medications. It is not a decision that either of us made lightly but there was little choice in the matter. For the last four years, I have been completely reliant on a cocktail of medications and injections to simply make my day to day life manageable. It has taken years to find the right combination of medication and injection frequency, so taking a step away from all of this had been extremely frightening; I had no idea how my body would react or how I would cope. Whilst there was every possibility that in actual fact I would manage perfectly well, I was also painful aware of my medical history, of the years spent with weekly ambulance trips to the resus department. This is not something I ever want to repeat.
At first I was managing fine, the emotional ups and down that come with weaning yourself off of medication was nowhere near as bad as I had expected, and I had managed longer than 6 weeks without botox; which is frankly a miracle. However, over the last two weeks or so I started to worry, I put my symptoms down to an ongoing cold I’ve had for the last month. There was a familiar tugging sensation in my jaw, my eyes were slightly more aggravated than usual, and I was experiencing ‘violent shivers’. Before I was diagnosed in 2012, I always called my arm twitches ‘violent shivers’, it was my way of convincing myself there was nothing wrong. It’s funny how easy it is to fall back into bad habits.
This weekend my jaw has been particularly bad; it was deviating dramatically and starting to tremor. My only medication option was codeine, which left me feeling slightly spaced out but did nothing for the pain I was in. Since then my body has gone dramatically downhill. Last night my jaw spasmed, violent tremors followed, dislocations occurred and then my arm spasms joined in. I had forgotten how much pain all of this can inflict.
last nights dystonic antics
After very little sleep and being no better this morning I arrived at my emergency doctors in the hope they could suggest anything to help. I generally judge how bad I am by the Drs reaction; she was appalled I had ended up in the state I am in and was lost as what to do. So now on her instructions I am curled up in bed encase I have a seizure, I have emailed my neurologist in the hope he may contact me sooner rather than later, and I’m waiting for her to phone me back with an action plan. She had been debating trying to admit me in to hospital, and as much as I have my concerns with my local hospital due to previous experiences, I cannot help but feel that this is this best place for me as I can no longer eat and I haven’t successful managed a sip of water since early this morning.
apparently I don’t need a working face
Fingers crossed things improve soon.
Yes that’s right Dr, at the tender age of six I was bitten by a mythological creature. Within six months of this terrifying beast having a chew on my thigh you diagnosed me with M.E. You had exhausted all other diagnostic criteria. Not once did you consider that something so dramatic as a dragon bite may have occurred. Had you have taken a thorough medical history maybe right from the start you would have suspected Lyme Disease, perhaps you would have treated me and cured me of this hideous illness straight away. But how silly of me. You are a Dr, you do not deal in the likes of maybes, possibilities and mythological creatures; only cold hard facts, ones that fit nicely into your tick boxes.
Over the last 17 years do you know how many times your kind have uttered the words “It would appear you have X, but I am unsure because you just don’t fit into any of these boxes exactly!” Since when did the boxes become so rigid and unadaptable, are we not all unique individuals with our own mix of conditions that affects us all in varying ways? If as people we are so unpredictable in the way a condition may manifest, why then are your boxes so unforgiving. Only Monday of this week the Dr sat there trying to decide whether to diagnose me with inflammation of the optic nerve in both eyes or inflamed retinas in both eyes. Frankly the lovely woman was lost, I had her quiet confounded. She could see plainly that I was rather ill, her barrage of tests confirmed that, but not one of them could put their finger on as to why. I sat there quietly next to my mother, both of us whispering “The dragon bit me 17 years ago, but you don’t believe in Chronic Lyme Disease.”
Now replace the word dragon with a tick. This small seemingly insignificant creature is known to carry, in many cases, Lyme Disease. A disease that more often than not will report a false negative during testing due to the lack of accurate testing methods available. Oh but a lumbar puncture would pick it up you say? Yes, it sometimes does, but my neurologist swears me away from it for fear of making my Dystonia worse. One hospital says we will give you IV antibiotics that you need to cure you but we will only do this if you have an L.P, another admits they are 100% certain I have chronic Lyme but their hands are tied due to regulations that are out of date and blinded with inaccuracies.
Chronic Lyme is often hailed as the Great Pretender. You only have to look at me to see why. Here I am in another flare up of symptoms, attempting to treat each one as it appears. Its distressing really, knowing that IV antibiotics would cure but regulations prevent this as I’ve had both positive and negative results. So in the meantime it’s a guessing game of what will subdue the next round of symptoms for now.
If only Drs believed in mythological beasts like Dragons and Lyme Disease.
I’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.
I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.
Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous. I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.
I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest
Today, as is usual for my six weekly routine, I went up to London to see my neurologist for my injections. I sat in the waiting room running through my list of questions with my mother “Whats the likely hood of the injections making my CRPS worse again? How likely am I to pass on HLA-DRB1 type Dystonia?” etc. The patient before me stumbled back out towards us all a flutter mumbling to her partner how she could not believe the Dr was leaving. The importance of my questions vanished. My neuro, my glimmer of light in a sea of Drs who drive me to the ends of my wit and leave me wanting to throttle them, leaving? I was vaguely aware of my mum pointing out not to get emotional until he had confirmed what I had overheard.
Sadly my neurologist is moving to another hospital where they do not run a botox clinic. He has asked that I email him regular updates, and has said that if things ever take a turn for a worse I just have to ask for a referral to him and he will see me. All this is extremely sweet and reassuring. I’d like to say I smiled and congratulated him, but if I’m honest I cried…a lot. It may seem like a small thing having to transfer too a new neurologist but when I first became ill I had several absolutely hideous neurologist who dismissed my symptoms. They blamed them on stress and my history of abuse, they refused to listen when I pointed out that I had become ill at a point in my life when I was the happiest I had ever been and had moved on from my past. My neurologist was the first to take me seriously and help me. I’m terrified of being handed over to another heinous consultant.
I have one more appointment with my Dr before he leaves, which will give me an opportunity to thank him (without crying this time) for all that he has done for me. After that it will be the start of a new chapter, hopefully one just as positive.
The difference between my mental and physical capabilities is vast. Dystonia has meant that my health has changed frequently and I have to constantly remind myself that just because I think I can do something doesn’t necessarily mean I can. Those who know me well, know that I tend to think well I’ll give it a go and if I spasm, then I’ll learn from it. Trouble is, my thought pattern then alters to well body, you may have spasmed last time, but if I do it again perhaps you will learn. It is not a smart way to deal with the condition; my neurologist really is a saint for putting up with me.
Mentally I feel no different to how I did before I became ill. If anything I am more determined to do things, to attempt to try to retrain my brain. It may sound slightly out there, but if you can desensitize nerves, then why not reteach the brain movements? I’m determined to get it through to my Dystonia alien, that twitching and throwing things just isn’t polite.
Over the last two weeks I have been far more active than usual. With my exams over and done with, and no revision needing to be done, I have filled my spare time with constant activities. Part of me is aware of my neuros six weekly reminders to not overdo it. I know that eventually my body will crash and spasm far more than usual, putting me at risk of seizing. It would be far more sensible to pace myself, to do an allotted amount each day. To do this would make my Drs happy, but I doubt it would reassure anyone that I was any safer; friends and family would still be concerned about me. I would still be ‘ill’.
To live my life by allotted sensible slots wouldn’t make me happy. Burning out now and then hurts like mad and I always say that I’ll take more care next time…followed by a laugh because I know I don’t mean this. I love to be as busy as I can. I will never overload myself completely; don’t get me wrong I allow for plenty of down time, chilling with a good DVD, recuperating. But slowing down isn’t for me, I know I’m ill, my body gives me a daily reminder (when the Botox is wearing off) with all the walls I hit, the jaw spasms and mad blinking but I have a lot of living to catch up on. I plan to do just that.
I hadn’t planned on writing this. Originally I was going to keep it pent-up. But the whole point of Dystonia and Me is to share with you all the highs and lows of this condition and the many battles I fight along the way. As I mentioned in a post during awareness week, I was abused physically and emotionally as a teenager. I have since had a lot of therapy to help me come to term with this and move on from that period of my life, which I have done. I have always strongly believed that you should be completely honest with your doctor. After all how else are they meant to successfully treat you if they do not have all the information they need?
The way many doctors have treated me after learning I have a history of abuse has left me wishing I had never informed them of it. This specifically applies to my GP. It seems that every aspect of my sanity has been called into question. I have never been so insulted. Yet it would seem that I am expected to roll over and accept this as the norm?!
My GP called me into a meeting to explain himself last week. At the time I was slightly pacified. Yet as I sit here, redrafting blog posts for college (exam prep), I find myself becoming incensed. This same routine has gone on for years now. Is it really so hard to believe that an abuse victim can move on with their life and be coping well, despite having a movement disorder? I am absolutely fed up of having to reassure him over and over that I am not depressed, that my past is not the route of all my problems. Even informing him that the genetic test showed that the Dystonia was genetic did not seem to make a dent in his warped view. As I keep pointing out to him, I am not the one dragging up my past it is him.
It worries me how little so many doctors know about Dystonia. My GP has looked after me since 2012, and yet still clings to the idea of abuse being the root of all my problems. This is despite having letters from my neurologist and my cognitive behavioral therapist telling him that my past has nothing to do with my Dystonia. I know that I am not the only sufferer experiencing this problem. Having to fight against doctors is hard. Standing up to them is frightening, I respect my GP, but at the same time he angers me so much because he is not taking the time to listen to myself or my neurologist. By standing up though there is a chance he may learn. I keep hoping…you never know. He may change.
When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.
Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.
I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.
I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.
I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.
To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare
It’s Dystonia Awareness Week 2015! In a similar way to last year I plan to do a series of blogs explaining the different aspects of Dystonia. Normally my family and I hold a bakesale to help raise funds for The Dystonia Society during the awareness week. However due to the majority of my family having exams this month we have decided to delay this until June. I’ll be posting the date for this soon.
I want to focus today on the road to diagnosis and treatment. This is such a scrambled and boggy area to tread. Many people with Dystonia suffer with the condition for years before getting diagnosed. Often we are made to feel as if it is all in our heads, and end up with referrals for counselling. Trying to get medical professionals to listen and take us seriously can be extremely hard, especially if they have not had any experience with the condition before. I don’t believe they intend to make us doubt our own sanity but it happens.
In 2012, for example, I spent just over a week in a local hospital after the muscles behind my eyes spasmed, forcing my eyes to roll back in the socket and stay there, leaving me functionally blind for 15 hours. Those 15 hours were hideous, I was terrified and in a fair amount of pain. When you looked at me only the whites of my eyes could be seen. I was repeatedly told by doctors during this time to “just roll your eyes down”. Needless to say it became hard not to snap and inform them that if I could do that, I would have done so already. I felt as if no doctor believed me. I was forced to talk to a psychiatrist during my stay.
A couple of months after this I met my wonderful neurologist, who took the time to really listen and examine my symptoms. I was fortunate to get diagnosed in a matter of months. Many others with the condition are misdiagnosed for years, decades in some cases! This is one of the many reasons awareness of this debilitating and life changing condition is necessary. A correct diagnosis leads to treatment that can help improve quality of life. The more awareness that there is the better chance of sufferers being diagnosed in a far more timely manner.
On Wednesday 6th May a Dystonia Awareness message will be sent out Via Thunderclap. The more people that sign up for this the further the reach of the message. So please sign up at the following link https://www.thunderclap.it/projects/24206-dystonia-awareness-week-2015 .
Today I was up in London to see my neurologist to get my six weekly injections. I was looking forward to speaking with him as this time round my botox had been 7 weeks apart. Normally this would have resulted in severe facial, neck and arm spasms but for a change I have been okay. It is only over the last few days that I have felt the familiar tugging sensation around my eyes, jaw and neck. Whilst I have had spasms in these areas it has been easy to cope with. My arm has been spasming/twitching more but still at what I consider an acceptable rate, so I was eager to discuss with him aiming for 7 weeks again. Now as luck would have it he’s not working that day in 7 weeks time, so my appointment is as usual in 6 weeks, but this something I would like to aim for.
I am not fond of needles at all. In fact watching the doctor draw the botox up each time is enough to make me want to run screaming from the room. Every 6 weeks I turn up at the hospital racked full of nerves, if the injections did not make such a big difference on my quality of life then I don’t think I’d go. I trust my neurologist completely however, and after two and a bit years of having him administer my injections I feel confident in his skill. You can imagine how sky high my nerves rocketed today when upon arrival I was informed that my neurologist was absent. The doctor filling in for him was perfectly pleasant, however having never met him before, I found it hard to sit still in the chair whilst he injected me.
Today was my first round of injections since developing Complex Regional Pain Syndrome. On my GP’s advice I tried covering the area that was going to be injected on my back with topical local anaesthetic. I find it hard just wearing clothing over my shoulder/arm at the moment so was dreading having a couple of needles being inserted. As I have mentioned before I have Ehlers Danlos Syndrome Type 3, this unfortunately means that local anaesthetic does not work for me. I had been hoping that as it was a topical one and not an injection that it would be slightly different and would work, however I discovered very quickly that this was not the case. I cannot describe what my arm has felt like over the last few hours, it has been a mix of a burning and pin and needles sensations. I am hoping that this will die down as the evening wears on.
Hopefully my neurologist will be at my next appointment and we can discuss our next steps.
I’d like to start this post off by apologizing in advance if bits don’t quite make sense. I have a fair bit of medication in my system and I am having to concentrate very hard as I do not really feel like I am with it today. Over the last few days my body has been very interesting. I presumed it was just in meltdown mode after the trip to London and back for my Botox injections last Tuesday. My right leg in particular has been bad. The spasms have been impressive but rather painful. I have found myself repeatedly over the last few days in the position in the photo below. which I can assure you is not a comfortable one to be in.
Last night my body did full body twitches, which was a new symptom for me, however this did not seem to stop, then my leg joined in spasming repeatedly into the above position. However several times whilst in that position my hip spasmed in one direction and my lower leg spasmed in the opposite direction. This caused agony, and according to my family they all heard a cracking sound. I then started to have lots of my Non Epileptic Seizures. In between seizures when I was spasming we tried administering our crisis medication, Tramadol and diazepam, but this did not seem to touch the pain or the spasms, which meant that an Ambulance had to be phoned.
The paramedics, Gareth and Amanda, were two of the nicest people I have met. They helped keep me as comfortable as possible, which is saying something considering the amount of pain I was in. It was decided that I needed to go to hospital to have my leg checked out as it was swelling and they thought I had torn a ligament. In the end they gave me IV morphine which made me slightly sleepy and giggle, to helped ease the pain enough to transfer me into the ambulance safely, where they then gave me Gas and Air. I now understand why the women I looked after on the labour ward loved the stuff so much. At first it had me creasing up in laughter like a crazy woman, eventually I then thought I was dreaming the whole situation, which was when we decided I had maybe had enough of it. I have to say I was so impressed by the standard of care they gave me. They didn’t know anything about my condition, but they treated better than half the previous doctors I have seen!
The doctor Teeto and the nurse Precious in charge of my care, were again wonderful people. I feel extremely lucky to have been under the care. Teeto actually knew a fair bit about Dystonia and was not fazed by spasms at all. He quickly had me sent down to x-ray to make sure I had not broken my knee, where I had some more seizures on the poor woman as she to move my leg about. Thankfully I have not broken anything!! I have just damaged and pulled some of the bits in my leg. Teeto, sent me home with a box of Diazepam, his plan is for me to take this at regular intervals over the next few days, in the hope it will break this new spasm cycle.
Whilst I am in a lot pain now, and feeling rather spaced, I am so thankful that I was under the care of four such wonderful people last night. They were all so caring, and you could tell really wanted to help stop my pain and spasms. It is amazing the difference incredible people like these can make during times when you are in agony!