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 I moved into my halls of residence at Oxford Brookes University. Saying goodbye to my family was incredibly hard. On countless occasions they have helped me through painful spasms and watched over me during my seizures. However sitting here in my new bedroom now after promising my mum that I would be careful and look after myself, I feel immensely happy. I have been battling for three long years, but now that I have finally reached a place where I can cope with my symptoms myself most of the time, I have won.
I cannot wait for Wednesday when our introductory lectures start, but in the meantime I look forward to having some time to go out and explore Oxford.
Oromandibular Dystonia was one of my first symptoms that I suffered from before the Dystonia became generalised in 2012. Working on a trial and error basis with my Neurologist at the time we tested which Botox routine would best work for me, as it was clear 12 weeks was too long a stretch. Eventually we found the magic number, 6. Since then I have had my injections every six weeks and it has only been on the rare occasion that I have had to deal with my jaw spasming.
Jaw spasms. Two little words, yet they strike so much fear in me. The small spasms at best are uncomfortable, the extreme ones dislocate my jaw and cause seizures. My little alien loves causing spasms that leave me crying, clutching at my face as it contorts. In all honesty I couldn’t tell you why I grab my face. It’s an automatic response, as if a small part of me believes that if I clutch hard enough or push in the right direction, the pain might all go away. A child’s belief really, but one I find myself immersed in every time.
You would think that after almost three years of Benedict pulling my body this way and that, that I would no longer feel embarrassed by the teething tummy I resort to using to help prevent my upper teeth digging into my gums during a spasm, that I would no longer feel humiliated by the fact that I have no control over the majority of my body. I deal with the embarrassment better than I used to. I now force myself to carry on with my life and go out when I’m spasming, whereas previously I’d have shut myself away.
I spent Sunday with my boyfriend, it was the first time he had seen my facial spasms. He was great, and helped me medicate myself. At first I dealt with it fine, but eventually as the day wore on and I got tired, the spasms got worse until I resorted to using the teething dummy. I’ve only met his family a few times, so my embarrassment levels sky rocketed at this point. It’s not how I want them to see me, though I know that for them to be aware of my condition is a positive. What 22year old wants her boyfriend’s mum to see her with a dummy?! These are all qualms I need to get over, and with time I shall do.
I have sent my old neurologist an email informing him of my rather disappointing appointment with my new neuro. I am hoping that he will be able to speak to my current neurologist, so that he will agree to do six weekly injections. It may be a long shot, but it’s getting hard to hold my head up as well now. My next round of injections is not until the 12 August, so until then my dummy and TENS machine are my best bet.
When I saw my personal trainer Beckie the other day she pointed out to me that she had trained with me for a year now. Reflecting together on the progress I’ve made in the last year was a real eye opener. I think sometimes I forget just how much I have improved, I allow myself to become absorbed in the pain and the spasms. I focus on fighting constantly against the Dystonia. When I met Beckie I could barely stand for even twenty seconds without my legs spasming, my whole body out of control, I was completely reliant on a wheelchair. Lyme disease was eating away at my life and I was fighting what felt like a losing battle.
I remember the first time Beckie came round; it was a meeting between herself, my mother and I, to discuss what exercises I could do without setting a seizure off. Although our aim has always been to not trigger a spasm, I’ve always made it clear that if I spasm, I don’t mind. Let’s pause, wait for it to pass and then carry on. I’ve carried on with my mind-set that my brain will learn (I understand that this is unlikely but a girl can hope)! When we began it was completely baby steps, learning what my body would cope with and what would cause it to throw a complete fit.
Now, after being on Lyme treatment for a year, and finding a regular Botox regime that works for my Dystonia, I am capable of so much more in our sessions. Some exercises still cause my body to go into spasm, but I apply the same method as I did a year ago, pause, wait and then continue. It works every time. Beckie has helped me strengthen my joints after my body successfully caused a lot of damage to them. I will never forget the look on my physiotherapist face when she first assessed my legs and realized the damage the spasms had done to the ligaments. I’ve gone from not being able to stand for more than twenty seconds to being able to walk. I admit I need knee and ankle splints to be able to do so, and sometimes I need walking sticks, and if I’m having an awful day I rely on my wheelchair. BUT I have made so much progress. I don’t reflect often enough. Looking back on this time last year I cannot believe how far I’ve come. I look forward to the progress I can make in the months to come. Learning to manage these conditions one step at a time.
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.
Frustration. Worry. Pain. Hope. Joy. A selection of the emotions that over the last few weeks I have experienced. I have improved leaps and bounds since I started new treatment for Chronic Neurological Lyme Disease several weeks ago, there is a long way to go but the improvement are more than I could dared to have hoped for. Yet I feel like I am clinging to these improvements, that they might slip away at the slightest wrong move.
I must admit that on some level I am fuming that it has taken 16 years to get diagnosed. I have spent the majority of my life ill, passed from one specialist to the next, having test after test. The result of their continued ignorance is that I shall now have to live my life with Dystonia. I was not born with it, as far as we know it is not genetic, if I had simply been given antibiotics when I was six or in the couple of years after that I would not have to live with (a currently incurable) movement disorder.
I would not have to cope with the agony of my jaw dislocating due to spasms, or my neck twisting hideously. My ligaments throughout my whole body would not have been so stretched due to spasms that it shocks physiotherapists at the extent of the damage. I would not have developed pain triggered Non Epileptic Seizures if not for Chronic Neurological Lyme disease and Dystonia. I would not have spent 10 hours unconscious seizing in A&E on New Year’s Day 2013. I would not have collapsed and seized in the middle of roads, on the stairs, in shops etc. I would not have put my family, my friends, and myself through hell and back.
Although I have always been ill in one form or another it was not until 2012 that it became disabling, right at the end of my first year of Midwifery training. As many of you know, Midwifery is my dream job, and I hope to one day be able to go back to my training. More than Midwifery I dream of life without illness (I except I have to live with Dystonia). A life where my family don’t have to plan their activities around my health. A future where I can live life to the full without worrying about the impact it will have on my health! Without full treatment for Chronic Neurological Lyme Disease I won’t get better. I will continue to deteriorate rapidly. Lyme Disease has claimed the lives of too many people already I don’t plan on being its next victim. I need to raise £10,000 to fund vital treatment if you are able to please help or share this page/link! https://fundrazr.com/campaigns/erfg6/ab/04081d
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!
So my body seems to have decided to change its tactic. Normally when I am in a lot of pain I have a Non Epileptic Seizure. The last two weeks or so my body has disconnected from certain parts of me or all of me, leaving me functionally paralysed. I have had a handful of seizures as well but the functional paralysis does seem to be my body’s main coping mechanism now.
I am in two minds about this change. On one hand I am happy that there has been a decrease of seizures, as it means I am conscious more often, not forgetting hours either way of the seizures etc. On the other hand the functional paralysis can be rather scary. The first time it really hit me I lost the connection to the lower half of my face for 7 hours. A big part of me knew it was just my body coping with pain, but a small part of me was terrified that something worse was at play such as a stroke. When the functional paralysis comes out to play I either disconnect for one to two minutes or I disconnect for hours. There is no middle ground.
As I type my right foot is in spasm. It felt like the force of the spasm was trying to break my big toe. I was in a lot of pain and was beginning to think that I should be sensible and shimmy down the bed a bit so that I did not hurt myself if I ended up having a seizure. However instead of seizing both my legs ended up functionally paralysed despite my left leg having no spasm in it at the time.
I am seeing my neurologist on Tuesday for my injections and a chat, so am going to add functional paralysis to my list of questions. I’m not sure if there is anything he can suggest to help but he may be able to advise something. I think I prefer my body coping this way but at the same time it scares me slightly.
After Tuesday nights functional paralysis drama, I am pleased to report that my little Dystonia alien has not scared me witless with a repeat episode (so far). In fact other than a light and pain triggered seizure whilst at college yesterday, I have been rather good. I even managed to go riding on Thursday!
I spent Wednesday in bed resting, as I did not want to trigger off any spasms or seizures as I desperately wanted to attend both college and riding on Thursday. Amazingly my Dystonia gave me break from the recent dramatics and I only had to contend with my usual spasms. The normality of the usual spasms were a much-needed breath of fresh air. Both college and riding went fantastically well, with my spasms only acting up right at the end of riding – thankfully that was perfect timing,
Yesterday, for several hours my legs were functionally paralysed, this did not scare me as I am used to this happening several times a week. It turned out that it had been triggered by me strapping my splints to my legs too tightly – but hey its a lesson learnt. I now know to always check the tightness after strapping myself to them. I had a little light and pain triggered seizure whilst I was at college yesterday. I feel very lucky that the college dealt with this calmly and once I regained consciousness they let me carry on as if nothing had ever happened, which is just how I hoped they would react.
Today my body is extremely sore and I am experiencing an on/off functional paralyses to my legs. Therefore I am having a lazy day in bed. I am so happy that I am managing college and riding. I had been worried that the two would be too much for my body to cope with, but so far so good. It is days like the last few that remind me that despite being in a wheelchair and not really having control of my body, I can still make a life for myself and enjoy the things I love. I just have to remember to balance things out… I’ll get the hang of balancing eventually 😉