Yesterday was a hard day physically & emotionally. I was struggling to sit up without my heart rate shooting through the roof, experiencing extreme dizziness, fatigue and high pain levels. This is my new normal though, and it’s exhausting. Late morning I had a phone meeting with my university disability advisor. She enquired about my symptoms and their impact on day to day life, along with what advice I had been given from the Drs; this was so that a plan could be put in place for me to safely complete the next semester of my degree. Admitting that I was fainting 20-30 times a day on average, had been advised to be on bed rest and use my wheelchair if I had to go out (which results in dislocations if I self-propel) was not something I found easy to vocalise. The little stubborn voice in the back of my head was protesting that I was perfectly well enough to physically attend my lectures. However not being able to guarantee I’ll remain conscious, being unable to eat without fainting, and with tachycardia developing just by sitting up a decision was made that I could not safely attend uni without putting myself at risk. Normally I’d argue against this, and I wanted to, but I have to remember that it’s not just myself I would be putting at risk. Now this doesn’t mean I’ll be putting off the semester till next year, it just means I’ll have to complete it from home which is perfectly doable.
Despite the fact that I know this plan of action is reasonable and realistic I couldn’t help but feel defeated. I know I’m not well enough to attend class, but to me that’s not acceptable I feel as if I should be trying harder; it’s a ridiculous attitude to have, but it’s there nonetheless.
Late last night I found myself feeling deflated and quite sorry for myself. I know this is pain related, I haven’t had so many bad pain days in a row for some time, so when periods of pain flare ups occur it impacts my view of things. Normally I’d just increase my meds, count down till my botox injections, knowing that in a matter of days I’ll be enjoying a good spell again. The fact that (unless an emergency spasm occurs ) there is no botox, no muscle relaxants, and limited pain relief options available until after the baby is here is hard. This is mainly due to having to accept my limitations once again.
Talking through how your feeling is something that I feel is undeniably important in enabling a person to help themselves. It’s the main reason I’m composing this post, so that I’ve expressed myself and can start focusing on being proactive rather than moping about. I spent a good chunk of time talking to my mum about this turn of events yesterday afternoon. Looking back now I can already laugh at the number of times I uttered the phrase “I don’t understand” or “I don’t know what to do”. The reality is I understand perfectly well why I’m not able to go to class, I have a crystal-clear understanding of the fact all of my chronic illnesses can get worse during pregnancy (and the majority of them have) however this is a temporary change, I also understand it’s okay to feel this way.
There’s really not a whole lot I can do to change the situation, unless anyone can point me in the direction of a fairy godmother? I can manage my pain the best I can but other than that focusing on the positives that surround me is the best way to keep smiling; when I look at what’s already happening this year (moving to a new flat, expecting our son, still being able to complete the academic year, and a publisher agreeing to take on my novel) I have to admit I have more than enough to be smiling about.
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.
Since I last blogged things have been hectic. I have spent the majority of my days either at the hospital having various investigations carried out, or on the phone to them chasing down followup appointments. This week I have had more bloods taken and an MRI of my brain, eyes and spine with contrast performed. Tuesdays MRI experience seemed a bit surreal. It took 35 minutes, three medical personnel and 7 attempts before I was successfully cannulated as my veins were up to their usual disappearing act. This time allowed for me to internally become quiet anxious at the thought of being in the MRI machine for a minimum of an hour – in the end it was about one hour twenty. I am generally not a claustrophobic person, but this machine brings that fear out in me, this is most likely exacerbated by the fact that I have to be strapped to the table to ensure my spasms cannot move me around to much and distort the images.
Taken just after escaping the MRI machine
My stress levels have been through the roof this last week. I have fought so hard over the last four years to be put on a medication regime that allows me to have more control over my body again, and live a relatively normal life. The mere thought that my body may become more of an issue again is distressing. However I am lucky that I have a good support system in place, my family help keep me distracted, my boyfriend is great at talking through my concerns with me, and my councilor has been a fantastic space for me to vent and explore my frustrations at my faulty body.
Relaxing in Costa after a long day of tests at the hospital
I get the results of my MRI on Monday. So I shall know then whether more investigations need to be carried out or if it is MS.
You would think after almost four years I would have fallen into sync with the pattern of my botox cycle. I would know when to expect the good spells, and be prepared for the out of control moments. Perhaps it’s simply misguided denial that has resulted in me still being unable to predict these moments, it wouldn’t surprise me really.
Up until this evening I had been enjoying a really good run. My body had been on very good behavior and as usual when I’m in this part of the cycle I had been making the most of every blissful pain free second. This evenings turn hit me out of the blue. I had been feeling slightly off whilst getting ready for a night out with my friends but hadn’t been able to quiet put my finger on why, so had decided to just ignore it and carry on laughing.
It wasn’t until we started making our way to our first destination of the evening that I realized what was wrong. Sitting down I had not noticed that the top of my back was slowly contorting. Each step I took was agonizing. My body simply twisted and further muscles joined in.
I’m not a naturally quiet person, I only generally quieten down when I’m in pain. The fact that I was virtually silent alerted my friends quickly that I needed to go home. So here I am now, lying down, arguing with myself, dressed up for a night out.
But hey at least I recognized I needed to come home.
This month is full of opportunities that I never expected to experience. Towards the end of the month I’m going to Amsterdam for a few days with the university, followed by three weeks as an inpatient in the Royal National Orthopaedic Hospital Stanmore. It is an exciting time to say the least.
The publishing trip to Amsterdam shall not only be an insightful opportunity for my course, but shall also allow me to explore how my body will react to travelling. Visiting other countries was a luxury, that when I first became ill in 2012, I thought would have to be swept under the carpet and not thought about again. However, in comparison to four years ago my bundle of conditions are extremely well controlled, instilling me with the confidence to explore this opportunity further. To help ensure that I am as safe as can be my neurologist agreed to administer my Botox a week early to knock unwanted spasms on the head.
Back in 2013 this was me; reliant on a wheelchair with monthly ambulance trips to A&E.
Three years on I’m incredibly lucky to have a regime of medication and injections that enables me to live life to the full. I still need my wheelchair every now and then, but it is no longer a necessity for daily life.
Less than a week after I return from the trip it is off to RNOH I go for three weeks of intensive rehabilitation for my EDS Type Three. I have been on the waiting list for this stint for almost a year and a half, so I’m a bag of excitement and nerves in anticipation for my admission. My time there should enable me to carry on life with better habits when it comes to using my joints, hopefully that will mean less over extending, and help strengthen the weaker muscles and ligaments.
During my interview for the treatment we discussed what I would like to focus on strengthening, my first answer out of the several I was allowed to give, was my jaw. The combination of EDS and Dystonia means that my jaw comes out of place extremely easily, which inflicts a severe amount of pain. Knowing that jaw physiotherapy will be possible is huge news for me, as this issue is the main factor behind my seizures. Anything that will decrease the amount of subluxations and dislocations for my jaw has the potential to make an incredible difference to my life.
Needless to say I’m counting down the days to go!
We recently got back from a beautiful family holiday on the coast. The weather was fantastic, and there is something relaxing about waking up to the sound of the sea lapping against sand. Going on holiday with Dystonia requires a fair amount of preparation. Every medication I’m currently prescribed has to be brought with us, just in case of an emergency, so that we can try to ‘contain’ the amount of spasms and deviation my body endures. Even though I can walk, both my walking sticks and my wheelchair were also packed. In all honesty I thought that packing the wheelchair was overkill, but then I have never enjoyed being it, I used to quite literally bum shuffle around the house rather than use my chair.
As many of you will be aware I have recently had a change in neurologist. At my first consultation with him he declared that he would not be following my old injection routine and that we would be switching from 6 weekly to 10 weekly injections. My objections to this change fell on stubborn, deaf ears. Due to his determination I spent my holiday, and the weeks either side of it, unable to consume solid food. Smoothies and soup were my saving grace. Chewing led to rather painful jaw spasms. It made sense to switch to soft/liquid foods in order to trigger the spasms less.
I spent several hours on a couple of separate occasions functionally blind whilst we were away. My eyes had spasmed shut. This was a complete shock to the system, my condition has been incredibly well managed for so long. It is my arm and jaw that I am used to contending with; not my eyes. I don’t think I’ve felt as thankful for my wheelchair as I had in that moment. For once I did not begrudgingly sit in it, I clambered in thankful that it enabled me to still be out with my family whilst lessening the risk of injuring myself. My family were fantastic, describing the sights in front of them to me so I could conjure up in my mind’s eye my own version. My brother amused us all by whizzing around the aquarium with me clutching on to the wheelchair with fear and hilarity.
I would much rather have not had to fight my Dystonia whilst I was away, but in hindsight I’m glad I had no option but to do so. Not only did it create some great memories, but it gave me the strength to not back down when I visited my new neurologist this past Wednesday. I stood my ground and managed to get him to agree to seven weekly injections and back at my normal dosage. This has left me feeling optimistic and far more relaxed about my upcoming move to university.
Today marks three years since my life got a good shake up as my Dystonia alien made its presence known. So much has happened over the last few years that it’s hard to keep track, I’ve had a handful of operations, countless x-rays, far too many ambulance trips, and appointment after appointment with varying Consultants. I have also gone from being reliant on a wheelchair fulltime, to being able to walk with the aids of splints!
It has been an incredibly emotional journey, and I think that’s a naturel response to everything that’s happened. I’m finally at a place in my life where I feel like I am climbing the mountain that is Dystonia, instead of tumbling down it. I still have days like today, where it’s more like I am stubbornly camped out on it, refusing to fall. This morning I woke with my jaw in spasm, and my neck spasming on and off. So naturally I have spent a section of this afternoon lying on my living room floor, as the support that position gave my neck and back was the only way I felt comfortable. A year ago doing this would probably have left me feeling annoyed that I had resorted to doing it, today I was simply laughing, though maybe I am simply losing the plot.
Battling this condition has become second nature, nowadays I always have medication on me, and sometimes there’s even a TENs machine in my handbag. It surprises me how quickly Benedict has become accepted into everyday life without a second thought. This is a bittersweet realisation. It’s fantastic because it shows we are managing, that we are not drowning under the pressure the condition puts upon us. However a part of me feels sad that it has become so second nature, simply because who wants it to be part of their routine to remember to take one of their many pills or injections?
I’ve always kept score against Benedict. I think this year I finally got even.
There are a number of different options sufferers are offered when diagnosed with Dystonia ranging from Deep Brain Stimulation to botox injections/ medication, and physiotherapy and psychotherapy. Unfortunately depending where you are in the world this can be a bit of an insurance or post code lottery. Each of these different treatment options has it’s own list of pros and cons, and they are not always the same for each suffer just because it helped another.
Deep Brain Stimulation can help significantly improve the symptoms of Dystonia, which in turn improves a persons quality of life. I know I would jump at the chance of having the surgery if I was eligible, but unfortunately like many others I am not classed as being ill enough for it. There is also no guarantee that it would improve symptoms, there is a chance of a negative complications during surgery or if an infection occurred post-op.
Injections, medication, physio and counseling also can help sufferers manage the symptoms and get about with their day to day life. However their is no guarantee how long the improvements will last. For example, over time its possible to develop antibodies and grow resistant to botox injections.
Treating Dystonia generally involves a combination of all of the above. One treatment alone often is not enough. however every individual is unique and there is always an exception to the rule.