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

Posts tagged ‘dystonia’

5 Years On

I can’t believe we’ve reached 5 years since my battle with my Dystonia Alien began.  I wouldn’t say time has flown by but I have certainly survived far better than I had anticipated at the start. In the beginning I struggled to picture a day ahead yet alone 5 years down the line. I was by no means depressed I just couldn’t imagine living with this condition for any length of time. Each hour was filled with pain, each month was taken up with ambulance after ambulance trip to the local resus department. If you had told me in 2012 that in 5 years time I would be typing this sitting next to my partner in our flat with a new baby I would have scoffed. It didn’t seem like a life I would ever be able to have.

Looking back on the first year of Dystonia I find myself thankful that even though I still have my spasms, my wonderful neurologist has found a combination of injections and medications that work for me. Life is in no way easy, pain is still a rather constant companion, but I have far more control over my limbs than I ever expected to have.

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My bad days, pictured above, are thankfully better controlled

I’m happy to say I no longer struggle to imagine the next day or year coming, nor do I dread the coming days anymore. Now I find myself excitedly looking forward and making plans for life post university, writing my next book and jumping without worry at any opportunity  presented to me. I acknowledge that I’m always going to have my struggles, but with multiple health conditions that’s to be expected. Despite, and because of my Dystonia, my days are filled with laughter and joy. What more could I want

It’s amazing  I don’t rattle, but all these pills keeping me ticking along.

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Clumsy But Cheery

Last December at one of my maternity appointments the doctors sat me down and informed me that they believed that the damage occurring to my body throughout the pregnancy would be permanent and that they did not expect me to recover; any minor improvements they said would take at least a year to occur. I left, slightly terrified and trying to wrap my head around the fact that I had been advised to upgrade my manual wheelchair to an electric one.

10 weeks on from the birth of my son and whilst my body hasn’t completely bounced back to its usual faulty self, I’m doing far better than anyone could have expected. I’m getting out everyday and helping prepare meals, making sure we’ve chosen spoonie friendly meals and we cook in bulk to help make flare up days that bit easier.  I’m balancing life as new mum with a home based internship, and couldn’t be happier. Each day I feel like I’m achieving and managing that bit more.

Naturally life never runs smoothly. Three weeks ago I joined Slimming World to help shift some of my pregnancy weight. Being plus size is detrimental to my EDS so I made the decision to make a positive change to help myself. Last night we decided we would treat ourselves to Slimming World Italian Affogato. This involves grating chocolate, something  I figured I would be able to do fine. Instead clumsy as every, I grated my finger, in my usual manner I brushed this off, however after waking up to it still bleeding this morning my GP sent me off to the minor injuries unit to have stitches.

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It was worth it!

I have never felt so embarrassed by my sheer clumsiness before. After having the stitches put in I fainted and broke the same finger! I don’t think the Dr could quiet believe it. Yet I left the unit with a spring in my step, this incident highlighted to me just how well I’m coping. Since going back on my medications my spasms have reduced and I’m getting out a bit more everyday. So whilst spending the majority of the day in minor injuries isn’t ideal, for the simple fact I got myself there and back with no issue is a huge achievement.

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EDS = clumsiness 

Hard Decisions; Hello Meds

Today I reluctantly restarted several of my medications. This was quiet an emotional decision to make as for the last almost 7 weeks I had fought to preserve with breastfeeding; despite the hospital wanting to give him formula from the moment he was born. But I can’t deny that there has been a slight increase in my jaw and eye spasms, and it makes sense to hit this on the head now.

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We had finally conquered breastfeeding

I know I have done well to get this far, but I still feel rather sad that we are now moving on, especially as over the last two weeks we had really got breastfeeding down to a much calmer event. The down side to having rare conditions is that not everyone who is involved with different aspects of my care has an in-depth understanding of just how my conditions affect me, despite my best efforts to inform them as best as I can. If people don’t want to familiarise themselves with the conditions there is not a lot that can be done about this. This sadly has meant that after a very short, under a minute-long eye spasm which I spoke through, a professional who witnessed the spasm presumed I had had a seizure (but didn’t think to discuss this with me) and contacted another member of my medical team causing a day of unnecessary drama and stress. Whilst this has all been cleared up now, I feel that this has left me with very little choice but to take my medicine again so I can prove I’m doing everything I can to prevent this my spasms.

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I had a long chat with my GP yesterday as the whole thing left me feeling rather needlessly judged, after all people with epilepsy have children, as do people who are permentalty blind. Thankfully she is very familiar with all of my conditions, and although she would rather I continued to breastfeed she understood why I felt there was little other choice in the matter.

My botox appointment has come through for august so I’m looking forward to talking through my future treatment plan with my neurologist.

Oromandibular Dystonia & Communication

 

In 2012 one of the first symptoms I developed was severe Oromandibular Dystonia. This meant that my jaw, mouth and tongue go into painful, and often extreme spasms. On these occasions I struggle to speak; this can be due to several factors such as: my tongue spasming and making it impossible to talk, the jaw spasm itself, especially when dislocated, making it impossible; or it is simply too painful to do so. I often attempt to try and talk through the spasm but this can aggravate it.

Trying to communicate during these episodes is difficult, even if I manage to successfully make a noise, what I am attempting to say may not be clear. In recent weeks, since the birth of my baby, I had been trying to think of ways around this. Writing it down is one option, however, I find physically writing very painful and often dislocate when doing so. Instead my partner and I have decided to learn British Sign Language; we’re incorporating baby sign language into this too so that Stefan, when old enough, will understand as well.

We’re off to a great start and enjoying this venture. I’m finding that I feel far more settled knowing that I’ll be able to communicate clearly, even on bad days. As someone who is quite the chatterbox, this is important to me.Image result for BSL

Summer, Spasms & Studies

Summer has arrived without a doubt, beautiful cloudless sky, sweltering heat and wonderful days out whilst I’m on my uni holidays. However, the arrival of summer also means that my body is working extra hard to compensate which has resulted in periods of tachycardia, eye and other spasms and an increase in pain. Sunglasses are now a permanent feature to try and relieve a bit of pressure on my eyes, but short of sitting in the freezer there’s not too much that can be done.

When I first became ill I found my focus was entirely on all the things I thought I wouldn’t be able to do anymore. Over the years I have conquered all the hurdles I was facing or found ways around them. Going to university was a huge deal and quiet the achievement for me. I’d been so reliant on others for years that living on my own and only having care for a little while a day was a nerve wracking decision to make. As you can imagine the idea of juggling a baby and uni has been a bit daunting.

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Stefan’s first trip to Oxford Brookes University

At first, I didn’t know how I would manage both, but last week we ventured up to my university so I could sit my last exam of my second year. I was extremely lucky that my lecturer was willing to look after Stefan whilst I sat the exam. This has given me the confidence that I can do both, and that I’ll find ways to cope, for example little things like strapping the pram to my wrist so that if I have a seizure or have an extreme spasm he’s perfectly safe and can’t go anywhere. Small things like this put my mind at ease and reassure me that despite my conditions I can manage life as a student and mum.

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Keeping the pram attached

Welcome To The World

It’s been over a month since I last posted here, thank you for all the lovely comments and emails checking that I am okay. I’m absolutely great, on the 14th May at 22.15pm I gave birth to our little boy Stefan Elijah. I have spent the time since adjusting to life as a new parent and learning how to respond to my conditions postnatally.

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I was extremely lucky during labour as my body behaved far better than I expected it to and my seizures never reared their ugly head. Despite my original concerns about an epidural I requested one, my labour was induced via a hormone drip which meant my contractions were rather literally constant which I didn’t cope well with. Whilst the epidural didn’t work fully (I could still move my legs and feel a lot of pain despite several top ups) it took the edge off and between it and gas and air I was able to cope far better. I went from saying I couldn’t cope anymore to having my inner geek come out and compare labour to an Orc trying to get through a hobbit hole! I have no idea how long my labour lasted, at 6.30ish pm I was only 3cm, so I was not classed as being in established labour, yet less than 4 hours later our little boy was here.

Since the birth my pain levels have dropped dramatically, I think mainly due the fact that he is no longer able to dislocate my ribs! Whilst I’m counting down to my botox injections, I’m thrilled knowing the appointment is in the post, I’m managing my jaw and other spasms rather well. I no longer push myself to get through any plans I had for the day if my spasms are on the more painful side, as it’s not worth risking having a seizure. Doing this has meant that I’m not wearing my body out and am needing less medication.

My Ehlers Danlos is causing a few issues at the moment. During birth I obtained a 2nd degree tear. Despite being stitched up at the time my body isn’t healing, so almost a month on I still have an open wound. Whilst I wait for a plan of action to resolve this I’m resting and on regular antibiotics to help.

All in all I am extremely thankful that the birth was so straightforward and I am loving life as a new mum. My partner is a fantastic dad and is great at helping me out and letting me grab some more sleep. I’m aiming to get back to blogging more frequently over the next few weeks, so check back for updates.

 

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Diagnosing Dystonia

Reaching a point of diagnosis in too many cases is a long and hard road to travel down. Despite being the third most common movement disorder there is an astounding lack of knowledge in the medical community. The lucky minority may get a diagnosis in months, but for most it takes years, sometimes decades.

In a way I was lucky that I had heard the word Dystonia once before, though I had no appreciation of its signifinance. Looking back at my medical history I had symptoms long before I realised there was anything potentially wrong. In 2008/2009 I developed severe neck spasms, however this kicked off after a rather spectacular fall from a horse which resulted in me landing on my head, so it was easy to put the spasms down to this. Then in 2010 I experienced for the first time Oromandibular Dystonia. My jaw dramatically deviated for a painful 3 months before we found a maxiofacial consultant surgeon who knew what was wrong.  I was informed that a quick operation where my tempromandibular joint (TMJ) would be washed out and botox administered would solve the problem. I never questioned this and presumed that Dystonia must be some sort of infection. This belief was reaffirmed by the fact that the operation was a success. Shortly after this  I developed arm and back spasms, but for several years I shook these off as simply violent shivers.

In the summer of 2012 I was coming to an end of my first year of midwifery training. For a couple of days I’d had ear ache and swelling and had planned to visit the GP but was in no rush to do so. I now recognise this as a sign of whenever my jaw is going to play up. That weekend I’d popped home to visit my family,  whilst relaxing in the garden with them my jaw started to spasm and once again deviate. My mum offered to drive me to the local hospital which I declined, convinced it was just an infection.

My GP that Monday was horrified. After one look at me I was on the way to the hospital with her convinced I had had a stroke. Countless blood tests and xrays were taken, and eventually a consultant appeared. He was the top bod in his area and had an ego to match. Due to his station I didn’t question his plan to wire my jaw shut. Less than 24 hours after the operation my flatmates were rushing my back to hospital, the spasms had returned with vengeance, breaking every wire in my mouth and dislocating my jaw. From that moment onwards the consultant dodged me. Refusing to see me or remove the wires which were ripping my mouth apart.

It took a further 3 months to find a surgeon willing and able to help me. Sitting in front of the surgeon who had treated me back in 2010 he was apologetic for the state I was in. By this point we had started researching Dystonia as I was now wheelchair bound and unable to brush my hair or feed myself.  

I often wonder whether 5 years on I would have received my diagnosis if I had never met my neuro. The Dystonia Society UK have a wealth of information that has been invaluable. It’s enabled me to ask for treatment and referrals appropriate for my conditions and have informed conversations with doctors. 

I never expected to still be fighting for correct care. The current hospital I am in would far rather blame my symptoms on past traumas than acknowledge the existence of Dystona. It makes me thankful daily that I have a neurologist willing to my corner.

What Causes Dystonia? 

The exact cause as to why people develop Dystonia is currently unknown for the majority of people. For a small group of people it occurs due to a gene mutation, brain injury, infection, secondary disorder, or as a result of medication.  Pinning down the root of the condition is something that research is currently focusing on.

So far we know that for some unidentified reason there is an issue with a section of the brain called the Basal Ganglia. It is known that this region of the brain enhances activity in the motor cortex which controls the agonist and antagonist muscles.  In a healthy person  when they make a movement the way the muscles contract and relax is coordinated and harmonious. However with Dystonia there is a deficient inhibition in the antagonist muscles which can result in both sets of muscles contracting simultaneously. It’s not clear why this happens. 

The Dystonia Society  UK have a fantastic wealth of information on the ins and outs of Dystonia, which I would really recommend reading to find out more information on the condition. For now it seems unlikely that any one particular theory will be proven right in the immediate future,  so I shall continue to personify my Dystonia into a cheeky little alien, it’s a far more entertaining cause.

Practically Complicated In Every Way

Its been a few weeks since I last posted, and it’s mainly because I don’t have a clue where to begin. My body has been doing what it does best and excelling at being complicated resulting in very confused Doctors trying to figure out what to do with me; I’ll let you know if they ever figure that one out!

Functional is how I would describe myself at the moment. In that I can get up and dressed but it’s causing a lot of pain, and then that’s my spoons used up for the day.  I’m pretty sure sleep would make me feel a thousand times better, but between my iron tablets (I’m extremely anaemic) causing severe sickness morning and evening, spasms, palpations and generalised pain, I have found that I am lucky to get three hours of sleep a night. As most people with chronic illness know being fatigued makes everything harder and it all seems a lot worse than it probably is. This has resulted in tears quite regularly recently simply because I don’t quite know what to do to help myself.

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I’m currently 33 week pregnant, so there’s not long left to go. It reassures me to know that once baby is here I can go back on my Botox injections and safely take stronger painkillers and muscle relaxants again. Whilst I’m keeping my fingers crossed I’ll be able to avoid going back on high doses of these, it’s comforting to know that I will be able to manage my pain far better.

I’ve been in bed for three hours now, tossing and turning. My left shoulder is agony, and I have horrific nerve pain in that arm and over my right rib. I feel rather emotional, and wishing for the ever-elusive magic wand to be waved to take the pain away. I know that this flare up in the long run will be worth it, and once the baby is here I’ll forget about it. But right now, coping with a flare up of my current conditions and a flare up of my new symptoms is making things feel pretty tough.

I’m hoping that whacking my TENS unit on full and using my heat packs will help me get enough sleep tonight that tomorrow is better.

Rare Disease Day 2017

Today is Rare Disease/Disorder Day 2017; it’s focusing on bringing much needed attention to complex conditions that are sorely in need of more research. I’m not going to to go into much detail about each of my individual conditions as each of their awareness weeks are just around the corner, what I’d like to discuss instead is my experience of day to day life when you have a rare condition.

Living/Mobility aids

When you read the words mobility aids I’m going to bet that the majority of you instantly conjured up an image of a wheelchair, crutch or walking stick. You’re not wrong all three of these are part of my day to day life depending on the condition of my body that day; and just because I perhaps didn’t need a wheelchair first thing that morning, doesn’t guarantee I won’t be completely reliant on it an hour later. In my daily life I have to use compression gloves, splints for my thumbs, wrists, arms and knees, neck brace and ankle stabiliser to try and keep my body in a somewhat functioning capacity. Now that doesn’t mean that I wear them all 24/7, but at any given time I’ll have the majority of them on.

 

A selection of my day to day living aids

Medication

I’ve had to come off the majority of my medication due to pregnancy, but I’ll admit I’m counting down to being able to have my botox injections and anti-inflammatory meds again. Just 5 minutes standing at the moment is enough for my feet, ankles and knees to swell up like balloons and takes a good hour to go back down. If my body is really playing up then just standing up wrong results in a knee slipping out of place. Between the spasms, the subluxations/dislocations and seizures, medication has become a vital part of my everyday routine. This involves being aware of when in the day I have taken them, remembering which ones it’s important to eat beforehand with and which ones I need to avoiding eating before taking, it involves planning in advance to make sure I never go out without my medication on me plus bringing along some spares because you never know just what may happen.

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A selection of the medications and supplements I’m reliant on

Disbelief

It’s been almost 5 years and I’m still not used to the looks and comments I receive. I’ve heard it all, that if I drink enough green tea, lose weight and seek therapy then I’ll be cured. People don’t seem to realise that every suggestion they can throw at me I’ve most likely tried, and that living with a chronic rare condition isn’t like getting over a bad cold. My brain literally doesn’t work in the manner it should, my genetic makeup is faulty which has resulted in a connective tissue disorder that will only get worse, and don’t even get me started on having a treatable chronic infection that the NHS won’t treat as A) They don’t like to admit that Chronic Lyme Disease exists and B) They’ll treat me if I get a positive lumbar puncture but because I have a movement disorder I can’t have a lumbar puncture. Honestly it’s all a bit of a joke.

It can be difficult dealing with general society and medical professionals refusing to accept your explanations. To a degree I don’t blame them, half of my symptoms are crazy and, as they are rare, people aren’t familiar with them and like to brush them under the rug. But doing that doesn’t make it any better, the symptoms don’t magically resolve themselves, if anything they get worse as I’m not receiving the treatment I need.

My Health Varies From Minute to Minute

There’s not much rhyme or reason to my symptoms, which makes it hard to predict what to expect and when, which in turn makes it difficult to manage. One day I may be perfectly capable of getting up, dressed, and having a generally active day. The following morning  I may wake up unable to even roll over in bed. The unpredictable nature means planning in advance is key but also difficult. More often than not plans are cancelled at the last minute due to ill health.

The Reality of Knowing I’ll Never Get Better

This is something that I’ve known since 2012, but with every new diagnosis of yet another rare condition that cannot be cured it gets harder to deal with. I find it hard to picture anything ahead of time simply because I know these illnesses aren’t going anywhere, that pain is always going to be a prominent feature in my life. How do you cope with knowing that? It’s been 5 years and I’m still working on acceptance. What I find hardest is when people say in a well meaning manner “I hope you get better soon”. It’s an automatic social nicety but it brings out the jealous monster in me. I want to be well more than anything, it’s just not a reality for me, and knowing that the one condition I live with that can be cured is unlikely to ever be sufficiently treated due to sheer stupidity inflicted on sufferers by NICE guidelines, well that just takes the biscuit.0bfcffe9889954c60563525d5c66d5c0

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