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

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Ignorant Drs

When you’re chronically ill you rather quickly get a feeling for the attitudes/how well informed the Drs in charge of you are on your conditions. IF you’re lucky you get a wonderful open minded Dr who takes the time to listen to you, my neurologist is a perfect example of this and has always fought for me. However, and sadly it seems more frequently, you come across Drs who are either simply not up to date (with everything they have to know this is understandable), or they just seem to enjoy being ignorant on the matter.

In 2012 I was admitted with worsening Dystonia to a nearby hospital, during my inpatient stay I developed pain triggered non-epileptic seizures. They completely dismissed my Dystonia and told me that it and my seizures were completely psychogenic and that the only treatment I would benefit from would be psychotherapy and that the seizures could not cause me any harm. This diagnosis was based on the fact that in my early teens I’d been physically abused, it didn’t matter in their eyes that I had sought years of counselling, and had put that section of my life far behind me. Months later I met my wonderful neurologist who confirmed my original diagnosis of Dystonia and informed me that my seizures had absolutely nothing to do with my past, but were caused by my body’s inability to cope with the significant levels of pain that I experience.

I have over the last few years been told repeatedly that my seizures cannot cause me any harm. It’s always fun to point out to the Dr at this point that this isn’t true when it happens on the stairs, or from standing, or crossing a road…the list is endless. In recent months, my POTS & EDS consultant has queried whether my seizures are in fact related to my POTS and autonomic dysfunction, but again this falls on deaf ears amongst my current local Drs.

It’s coming up to 5 years since my first run in with this particular hospital and their attitudes have not changed in the slightest. Last night I was taken by ambulance to hospital after having a seizure, I collapsed from standing and gave my head a rather good whack on the loo as I fell. Normally I wouldn’t go to hospital straight away for this, but due to hitting my head and being pregnant the hospital advised me to call an ambulance. This turned out to be a good call as halfway there I had another seizure which negatively impacted my breathing.

I’ve spent a lot of time in and out of the hospital recently due to my faulty body, so have got to know the staff in the wards relevant to me quite well. This also means I now dread every single visit. When the Dr came this morning for the ward round I felt like holding a hand up and saying chill I’ll leave now. He leaves me doubting my own sanity each time. However, I held my tongue and heard him out, just in case he’d actually done some research over night; he had not. Instead he gave me the usual lecture and then threw in that after discussing my case with a consultant, that has never met me before, they were going to refer me for psychotherapy for my seizures.

I’m beyond angry. At the back of my notes, and I inform the staff of this every time I am admitted, there is a letter from my neurologist explaining my seizures, explaining that it’s not just in my head and as clear as day states I need IV muscle relaxants and painkillers during one, and that there is no psychological deeper issue that needs dealing with. However, it’s become apparent that turning to the back of my notes and reading this letter is a far too complicated process.

Having to go through the same frustrating and time wasting process every single time I visit this hospital is exhausting and frankly disheartening.  I know that I did need to go yesterday and get checked over, but coming up against the same walls over and over again leaves me feeling like I would be better off avoiding this hospital at all costs and I can at least self-treat at home to a degree. It’s sad that 5 years on from my first encounter at this hospital, the same issue has yet to be dealt with.a560572834e8e4ffb7ca4d1e3f2e4337

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Functional Paralysis = Quality Floor Time

Pain at the moment is my constant companion. After weeks of agonising, seizure inducing pain, and more hospital visits than I care for, I was informed I’d dislocated two ribs. I normally handle dislocation rather well; if my thumbs have popped out, it’s no big deal, I can pop them back in with ease, my jaw causes a fair bit of pain and in some cases I need help relocating it, but the majority of the time I can manipulate it back into place myself. My ribs however are a completely different story, there’s not a lot that can be done about it. I’ve had several medical professionals try and get them as close to where they should be as possible, a tear-jerking process might I add, and every time within hours they are back out of place. Sometime it’s simply because I twisted too fast or I sneezed or, if I’m a real dare devil, I tried to get out of bed. Everyday basic activities cause enough pain for me to be on regular codeine four times a day, and tramadol if I start seizing. The hospital doesn’t know what to do with me at first, they admitted me to: rule out anything more serious such as gallbladder problems; keep a close eye on the baby (who’s coping miraculously well with my faulty body) and keep me on regular doses of paracetamol, codeine and oramorph. Whilst they thankfully didn’t find anything on the scans that needed surgery, they did notice that both my kidneys are distended which won’t be helping my pain.

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Most days I’m a 6. Currently I’m a 9.

Now I’m back at home and it’s hard to know what to do with myself. There are some brief moments in the day when my pain feels manageable, like earlier today. Foolishly this afternoon, I decided to take advantage of feeling okay and fold some baby whilst clothes sitting on the floor. You would think that this is a job that shouldn’t take too long and isn’t exactly taxing, right? Wrong. The pain quickly got extreme enough, despite codeine, for me to realise if I didn’t lie down flat on the floor asap I was going to risk hurting myself as I knew my ability to stay conscious was fading. Whilst being on the floor was enough to keep me conscious for the majority of the time (I’m pretty sure I had 2 or 3 seizures), it wasn’t enough to stop my brain from going into functional paralysis mode. I spent just over an hour unable to move any part of my body, struggling to get my eyelids to flicker and completely unable to make a sound. I knew I needed help and that my partner was in the next room, but I had zero ways of indicating to him that I was in trouble.

It’s like having your mouth gagged, your eyes taped shut, and your entire body rolled up and bound tightly in a weighted blanket; the entire time even your thought processes become sluggish and it takes effort just to think. There’s so much temptation to just give in to unconsciousness, I can feel it on the horizon, creeping closer and there’s not a lot I can do to keep it at bay. Some days I admit I welcome it; being functionally paralysed terrifies me, I can’t bare being aware of how helpless I am at the moment in time. Other days simply managing to remain conscious feels like the biggest victory I could ever ask for and achieving it is my way of fighting back.

After about an hour on the floor I had regained enough control of my body to make small noises and through the blessing that is voice technology instruct my phone to call my partner. Eventually we got tramadol into me and managed to move me to our bed. I’m exhausted, it sounds bizarre but having your brain cut off from the rest of your body is shattering. I’m now curled up, wrapped in a fluffy blanket, relishing in the slightly duller pain. I’m admittedly scared to even consider moving but the pain killers have enabled me to feel my body and I’m in a safe place which is all I can ask for.

“Just Stay Positive”

I have spent the majority of this week at varying hospital appointments, today is my rest day before heading back to the hospital for more testing tomorrow. Frustration and disappointment has been my main response so far to these visits. Part of this is most likely because I am under the care of several different specialists who are experts in their respective fields and generally wonderful. I’m quite lucky to have them as my doctors. However, every now and then I meet a new Dr and have to fight the same misconceptions and preconceived ideas from scratch; it’s exhausting, emotionally draining and depressing.

I’m quite good at finding the positives in being chronically ill,  I’ve been known to be in agony, hospitalised with spasms and dislocations and still be giggling away at whatever ridiculous manifestation my symptoms have appeared in this time. That being said I’m aware of how important it is to be completely honest with my care providers about how I’m managing and asking for help when I need it.

I had been counting down to yesterday’s appointment to see the local obstetric consultant as I am really at a loss with what to do to help myself. The advice so far has been plenty of bed rest and to use my wheelchair if I have to go out. This makes sense and I’ll admit I was unreasonable hoping the Dr yesterday would wave a magic wand, but university restarts at the end of the month, my fingers dislocate when I push myself and I’m pretty sure turning up to uni doesn’t count as bed rest. So I sat in front of the consultant asking if there was anything, even the smallest suggestion, that he could think of to help me help myself. “Just stay positive” was his advice. It was also the last thing I wanted to hear. 5 minutes later he admitted he didn’t have a clue about any of my conditions, so I walked him through them briefly. His advice changed to just come to hospital every time you have a fainting episode so we’re aware of you; my episodes are at the moment generally occurring over 10-20 times a day, so I’ll just move in shall I?587860e5ecea791e83ab995d35b2d52a

This whole appointment got me thinking about my array of conditions, which are confusing and do overlap, so for those of you who are curious here’s a brief introduction.

  1. Generalised Dystonia – this trickly little brain alien causes painful and often debilitating spasms in my eyes, jaw, neck, left arm and torso. It’s not curable, and every patient presents slightly differently. It’s currently playing up as I’m off treatment for the rest of my pregnancy.

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2) Ehlers Danlos Syndrome Type 3 – Unlike my Dystonia, unless I have dislocated or subluxed you cannot tell I have this condition. It causes fatigue, brain fog, pain, dislocations, allergies amongst many other symptoms.

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3) Postural Orthostatic Tachycardia Syndrome and Dysautonomia- This is a relatively new diagnosis for me. Currently this means I can’t even sit up without my heart rate shooting through the roof and my blood pressure plummeting. It’s pretty bad at the moment, due to blood pooling when I eat I pass out during meals. I also pass out if I get too hot, move too quickly etc. My autonomic nervous system is basically a bit temperamental and therefore many different automatic functions can malfunction.

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4) Non Epileptic Seizures – Previously my care providers thought these were pain related but now they think my PoTS may have something to do with it. Often Drs misunderstand these seizures and presume they are either psychogenic or part of drug seeking behaviour.nes.jpg 5) Endometriosis – I fought for years to have this investigated, constantly being told that it was simply bad period pains.  Many drs ignored the fact that they were every 2 weeks, extremely painful, and very heavy. By the time a diagnostic laparoscopy and treatment was carried out extensive damage had been done and I was told that my chances of unassisted conception were very low. This make me all the more grateful for our little miracle.

6) Chronic Lyme Disease – Lyme Disease is a bacterial infection that if caught early can be treated easily. When it becomes chronic, like in my case, it is extremely hard to cure. It affects multiple systems and therefore is frequently misdiagnosed.

Celebrating The Fabulous in Spoonie Life

I cannot believe how quickly this year has flown by, it feels like just the other month I was curled up writing my usual Happy Christmas blog post. Looking back at my blog posts from the last year it has been a rather hectic emotional roller-coaster. My blog was set up to raise awareness in 2012, but rather accidentally for me it developed into a rather useful therapeutic outlet. For you guys that means whilst I do post the happy stuff, the negative is slightly more frequent. This is simply because life is unpredictable and the good, bad and the ugly don’t come in equal measures.

So to help end the year on a positive spin here are just a handful of things that have kept me smiling this year that wouldn’t have happened if I wasn’t chronically ill.

  1. January 2016 – After BBC 3 Counties found my Cosmo Articles and my blog I took part in a quick phone interview to discuss disabled dating and ‘The Undateables’. Having been approached by ‘The Undateables’ before I took advantage of this opportunity to express how labels such as the shows title really are not helpful when tackling social stigmas.12583607_824636114328836_1166901021_n
  2. February 2016 – I was invited down to the BBC 3 Counties studio to participate in a valentine’s day segment on dating and disability. I was extremely nervous but the humour I manage to find in my conditions meant that I had several great stories to tell. It was a surreal experience that received great feedback and really boosted my confidence.12695785_835851056540675_1209977806_n
  3. March 2016 – Finally I realised the importance of not apologising for being the way I am. My genetic makeup makes me who I am. So what if I am a bit of an oddball with misbehaving limbs? If you feel uncomfortable around me then take a look at yourself and your views first, because my genetic make-up isn’t something that can be fixed and I no longer feel like I have to apologise for it.
  4. April 2016 – After waiting just over a year I finally was admitted to The Royal National Orthopaedic Hospital Stanmore for a 3 week inpatient pain management program. I’d been extremely nervous about this, and if I’m being honest didn’t see how they could help me short of waving a magic wand. 8 months later and I’m still putting my pacing lessons into practice (I slip up now and then but on the hole I manage much better), and I have a flare up plan that works!
  5. May 2016 – this had been a hard month, between being assaulted and the Drs telling me they were pretty certain I had MS (turns out I don’t but that was a scary few weeks). I was pretty much at my lowest point here. Then at the end of May I was offered a preliminary contract with Britain’s Next Bestseller. Now sure I may not have reached publication due to not hitting the pre-order requirements but hell that was a confidence boost and a half. I had a publisher believing in my work and that’s good enough for me.thumbnail_Regan Final Cover (2)
  6. June 2016 – I was still being investigated for MS, but with a wonderful man by my side I was managing to take it all in my stride. I was starting to see the funny moments in being ill again rather than allowing myself to be swamped in fear.
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  8. July 2016 – This marked 4 years since I had had to leave my midwifery training. Usually  I would mope about and be quite tearful. This year whilst the sadness is still there I can smile when reflecting on it. For if I had never become ill all the wonderful opportunities I’ve had over the last 4 years would never have happened.
  9. August 2016 – my partner gave me a key. I think I just grinned for the rest of this month.
  10. September 2016 – I started my 2nd year at university. I’d survived my first year and am fortunate to be studying at a university that goes above and beyond to help meet my needs!
  11. October 2016 – I was pretty ill and hibernated for most of this month. The fact that I recognised this and took care of myself was a huge leap forwards for me.deacf0c45b71fe38bc45675bced94b07
  12. November 2016- I ended up back in the hospital for awhile. Nothing out of the ordinary in that respect other than the fact I have a huge fear of this particular hospitals neurology team. After being misdiagnosed by them before it was no surprise when I found them to be as pigheaded and ignorant as previous. The difference this time around was that I had the confidence in myself, and enough knowledge of my conditions to advocate for myself rather than allowing them to treat me incorrectly.15128841_1048302218628890_7420253256398203646_o

Everything that’s happened throughout the year whether big or small has been impacted by my health. Previously I would have told you that was awful, I wish I could be ‘normal’; whilst yes I’d love to be healthy, I cannot deny I have an exciting fun filled life that if I wasn’t a spoonie would have been drastically different.

Time For A Bit Of R&R

After a haywire week I am home from hospital and resting at my mum’s for a little while. My plan at the moment is to catch up on the university work that I have missed and take some time out for myself to reboot; would you believe i’m finally pacing! It only took four years.

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Cuddles with this fluffball are the perfect medicine

During this time I won’t be blogging as catching up and getting back on track with my studies is currently my number one aim. So look out for a new blog post late December/early January.

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I’m A Spoonie, Not An Addict

Over recent months’ painkillers and Drs’ willingness to prescribe certain painkillers has been a hot topic in the news and on social media. Every country has different takes on the matter, but patient’s opinions are largely the same: We’re not addicts, so don’t treat us like we are! Now I’m not trying to deny that there are people out there, that for whatever reason, will say and do pretty much anything in order to get their hands-on prescription painkillers; but it’s sad that a handful of people can have such a dramatic influence on the chronic illness society. The majority of us need these medications.

Over the last few years I have had my meds altered significantly. I have met some Drs who didn’t want to prescribe me anything stronger than paracetamol, and whilst I’m always grateful for anything that makes a dent in the pain, I tend to find that paracetamol doesn’t make a huge difference to the agonizing spasms, or dislocated joints. If you have ever dislocated your jaw and then had spasms and tremors aggravate it for hours/days afterwards, you’d know that paracetamol isn’t going to do the job. Throw in pain triggered seizures and you’re in for one heck of a ride…and oh yeah more pain, on top of the existing pain, it’s a vicious cycle. Some Drs I have been under have been more than happy to have an open discussion about my medication, and then offer me a selection of painkillers that they feel are appropriate. I will always choose to start at the less extreme option.

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There is no getting around the fact that painkillers can be addictive, and this is where the problem comes in. I completely understand a medical professional not wanting to provide a long course of pills that have the potential to cause more issues such as addiction and withdrawal. That makes perfect sense. However, there are ways to go about talking through this with patients that are sensitive rather than demeaning. I have lost count of how many times I have been accused of being addicted to pain meds, I’ve had Drs suggest I have counselling for my traumatic past as a replacement for my painkillers. Now correct me if I’m wrong but I fail to see how counselling for previous issues will solve a movement disorder and a genetic connective tissue disorder. I understand that a low mood can cause a patient’s pain tolerance to drop, and that pain in turn can cause low moods, but I still have a major problem with this line of thinking. I’ve given in to Drs on all of these occasions, and have been satisfied in the notes that get sent to them by therapists querying why on earth they thought I needed therapy. Believe it or not I am pretty happy despite being physically flawed.

Patients should not have to worry about admitting to their care provider that they are struggling to handle their pain. They should be sure in the knowledge that their Doctor will examine all the options that are open, be that a change in prescription, a physical therapy referral etc. There are many avenues to dealing with pain that should be explored and there are great patient courses teaching you how to reduce your pain as much as you can without meds. But we shouldn’t be made to feel like criminals for holding our hands up and saying I need help. If I wake up in the morning and I’m in pain then I know that by pacing and with regular breaks in the day that I can minimise the potential exaggeration of pain, however if I wake up with spasms/dislocations or both, then it’s reassuring to know that I can dull that pain to a point where I can function.

There’s no shame in needing help and asking for it.

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This happens too often!

Duvet Days

Today is the last day of Invisible illness week 2016. I had had good intentions all week to blog daily, however readjusting to uni life meant that I was coming home from lectures and going straight to sleep. For this week I had planned to blog about achieving despite illness, and general spoonie hacks for coping with day to day life. Instead I’ve decided to leave these topics for another day and address the reality of what happens to someone with chronic illness when they catch an ‘ordinary’ bug.

I have spent the majority of today curled up under my duvet feeling frankly rather pathetic. Having caught a sicky bug and then developing a kidney infection I’m not feeling overly fantastic. Instead all my joints have been in a constant state of flare up pain, I have struggled to remain sitting upright for any length of time because my back feels like I have Snow White’s 7 dwarfs performing an irish jig on it; to walk the measly few steps from my bed to the bathroom has involved me gripping on to my walking sticks as I don’t trust my dodgy joints not to slip out of place and add to my already elevated pain levels. This is my reality every single time I catch some sort of acute bug. It sucks. Whenever my partner or my housemate has asked me what they can do to help, I’ve asked for a new body. It’s a silly retort and a bittersweet one at that. For a brief moment I’ll smile, as I know how unattainable that is, and then comes the downwards spiral because there are nowhere near enough words in existence for me to express how much I wish I could just have a new glitch free body.

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credit: Pinterest  – Spoonie Awareness

My mental well-being always takes a blow when I feel ‘iller’ than normal. So finding positives in each moment helps. Today I’m celebrating the fact that I recognized I needed a time out from life, I’m thrilled that I actually managed to change into a fresh set of pyjamas, that hell yeah I managed to walk through the pain with my stick, and sure I only managed a wee while but I still managed to accomplish some revision.

Sure I may be moaning and feeling rather sorry for myself, but I’m over the moon that I still managed all these positive moments. Tomorrow I’ll wake up to a new sunrise, and hopefully experience far less pain.

Happy 4th Birthday Blog

Can you believe that today is the fourth birthday of Dystonia and Me? It is astounding just how much difference another year makes. My battle with Dystonia and my other conditions is one that for a long time I have felt I was drowning in. It has seemed like a constant tug of war, desperately trying to stay on top of my symptoms. For many years it seemed to me as if my little alien was always ten points ahead of me, and I was treading water trying to regain my lost control and catch up. Today I can quiet firmly say I am miles ahead of my alien, I am now basking in the peace of coping.

I’m not saying that I don’t have my down days, there are plenty of days when my spasms, seizures and dislocations just seem too much. However, what I am achieving makes those days worth while. In the last year I’ve completed my first year of uni, managed to live a life so full that it’s been beyond my wildest expectations for myself, I have been nominated for an award, interviewed several times by the BBC Three Counties, and I have had a blog post censored (which is why if you’ve been looking for the last one you have been unable to find it). I’ll let you guess as to which one of those I am most proud of.

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When I started blogging it was to raise awareness of Dystonia, in a short period of time it has grown to encompass a whole host of conditions that I live with. In 2012 when I created Dystonia and Me, I had hoped a handful of people may read this site and learn something new that could have the potential to help others. I never expected this blog to become the lifeline that it is for myself. Blogging my experiences, good and bad, has enabled me to accept my complications and learn to love myself again. Through this blog I have come into contact with incredible people who I admire greatly.

If you had told me a year ago I would be writing this, I would have laughed. I was so caught up in my worries and excitement about starting uni that I never thought to think what could possibly lie ahead. Who knows what will happen in the next year!

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Would You Apologize For Shivering? Didn’t think so!

Every now and then I receive wonderful comments/emails/tweets from people expressing how reassuring it is to see me post pictures of my spasms. These messages often include phrasing such as “I don’t know how you do it, it’s very brave” and “I wish I had your confidence”. I don’t talk about this much, but when it comes to my spasms my normal confident self generally disappears. The stares in the streets, the whispers of “look at her face!” and people’s general ignorant remarks “Could you please stop or do it elsewhere” (usually in reference to my arm spasms) have caused me countless hours of upset. I don’t believe in wasting hours on being tearful over something I have no control over though, I hope the pictures below show that while hard, life as a spoonie can be fun.

               Does this splint blend in?  Laughter; the key to making the most of the spasm free moments!

In many ways I’m your stereotypical 23 year old, I take way to many selfies, own far too many shoes and grew up head over heels in love with books; a passion that has resulted in me wondering where to put them all now I’ve run out of shelves! I have all the insecurities that is normal of somebody my age: I am overweight, I do not care enough about fashion as I’d rather be comfy, and don’t even get me started on my complexion. It’s tiny insecurities that are perfectly normal but when combined with my spasms often results in self-deprecation. There are days when I can walk about not particularly worried about some of the smaller spasms I experience, and then there are days when I’m hyper aware and embarrassed when in public, not just because I need an aid such as my wheelchair or stick, but because my eyes are spasming causing functional blindness, and my jaw is contorting to the point of dislocation; this is all whilst my left arm is casually attacking anything in range.

When confronted by people asking me to refrain from spasms, I try to politely explain that it’s nothing I can control and apologize. But why should I. Should you apologize for shivering when cold? It’s a natural reaction that you would never dream of uttering apologies for. So why then should I issue out apologies for something that is just as natural. Sure, everybody and their friend may not experience it, but it’s my brain firing off incorrect signals that are just as natural as your shiver or yawn.

I live in pain every day and never know what to expect from my body. Yet people judge me for this. If all I manage to accomplish that day is a shower and pulling on a clean pair of pyjamas then who cares, all that matters is that I achieved it, other days I am capable of so much more. But just because I have had the energy and ability to carry out a task at that point in time, does not mean I will be capable of performing the same task five minutes later, let alone the next day.

I try to live every day ignoring the sideways glances and stage whispers, enjoying everything I am fortunate enough to experience. These days I try to capture my spasms on camera, as after all they are just as much a part of me as the functioning parts of my body. So when you are say I’m brave and ask how I cope the answer is quite simple. I’m not brave, I am stubborn, Dystonia and my host of other conditions will not stop me from living life. Coping is a different matter altogether. Some days it’s as easy as breathing, and laughing feels like the answer to everything. Other days curling up in my bed escaping into books where the words provide comfort and distraction is all I can do.

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Rocking my wheelchair!

When I Was bitten By A Dragon…

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.

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