The issue with being chronically ill is that when a new complication arises it can be hard to know whether it has been caused by a preexisting condition, and if so which one, or if a new condition has popped into the question. Over the last few weeks I’ve had increasing amounts of pain in my knees, calf’s and feet. I tried to brush this off but slowly and surely my feet and legs have started spasming. So now I find myself trying to work out if this is due to a spread of Dystonia or a relapse of Chronic Neurological Lyme Disease.
I had a long chat with my neurologist on Tuesday, he’s of the thought that my Dystonia has progressed as I’m still within the 5 year time frame for a spread of symptoms. Personally I’m hoping it’s Lyme related, as whilst still hard to treat, the possibility of remission again is real.
The idea that it could be Dystonia scares me due to the painful nature of the spasms; but I know I can get through it. I just have to take it one wobbly step at a time. I never thought I’d see the day when I would have to strap my leg splints on again but they’re worth the discomfort.
So here’s to crossing my fingers and seeing where the next 12 weeks takes us, by which point we will have a better idea to the cause and therefore treatment options.
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.
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
Thanks to a wide variety of medications
life is generally more controlled!
It’s amazing I don’t rattle, but all these pills keeping me ticking along.
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.
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.
EDS = clumsiness
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.
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.
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.
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.
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.
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.
Keeping the pram attached
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.
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.
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.