Posted in Archive, January 2017, September

So This Is Happening…

So, this is happening…Due May 2017.

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As some of you may remember, a couple of months ago I blogged that I was off all my medications and was learning to cope without them. Many of you noticed that I was very vague with my answers as to why myself and my neurologist had made the decision to do such a thing. After all, I’m normally complaining about my treatment being administered late. At the end of the summer I had the biggest surprise when we found out that we are expecting our little boy! Whilst very exciting, this meant a frank discussion with my neurologist about the available treatment options now open to pregnant me. There have been very limited studies done on the medications that I take for my varying conditions in relation to the safety of them in pregnancy, so a decision was made for me to come off of all my treatments and we would judge where to go from there.

I am extremely lucky to have a wonderful neuro who doesn’t mind me/my local hospital inundating him with emails and phone calls as my body plays its usual tricks. Although my body has been misbehaving with varying spasms and dislocations, the pregnancy itself has been progressing well. Due to having a whole host of conditions that are on the rare side of things, I have been under the care of a specialist maternity unit. It’s been fascinating seeing how they respond and their treatment suggestions; and very positive, as for a change they understand one or two of my medical conditions.

Despite weeks of horrendous 24/7 sickness, a spell in the hospital due to my Dystonia going on the rampage and a whirlwind of further hospital appointments as my body learns new tricks, I have continued with my university studies and plan on continuing into my 3rd and final year after the baby makes his appearance.(Thank Goodness for a uni with a fabulous disability team and amazingly supportive lecturers).

I’m looking forward to blogging about Dystonia and Me’s, and bumps adventures.

Posted in Archive, december 2016

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.

Posted in Archive, October 2016

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!
Posted in Archive, July 2016

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!
Posted in Archive, July 2016

Four Years On

Five years ago I was ordering every midwifery textbook and journal listed on my degree reading list; excitedly absorbing every word each page had to offer. Through that next year I lived and breathed for the job. I am immensely proud and blessed to have had that opportunity and experience.

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That year, however was blighted by ill health. I had operation  after operation and frequent trips to the local A&E. Reflecting back on that time I can track the dramatic decline in my health before my Dystonia took root at the end of July 2012 and Benedict my Dystonia Alien became part of daily life.

For the first year I honestly did not cope. People would tell me how well I was doing and silently I would disagree. I was spending the majority of my time holed up in my room desperately searching for any other answer, any other curable illness that could explain my symptoms. I had no idea how to be me anymore. I had built my whole identity around midwifery, the reality that I was, and still am, to ill to practice had me in denial for many years.

Since 2013 I’ve rediscovered how to live and enjoy life no matter the severity of my symptoms. It does not matter if I am reliant on a wheelchair/stick/splint or if my body is spasming to the point of distortion and dislocation, there is always something positive to latch on to.

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Now that’s not to say down days don’t occur,  they do but on a far less frequent basis than previously. Generally these are only after baffling drs or a new diagnosis being added to the growing list.

Living life with a goal oriented focus has been a huge help for me. It doesn’t matter how big or small the aim in mind, the motivation it provides is key. This mindset has enabled me to qualify as a Reflexologist, complete an AS in creative writing, start a new degree that I adore and now focus on getting my novel to publication.

Aiming and achieving my goals enables me to feel as if I am defeating Benedict. I know he’s never going away but it makes living with him easier. When I first got diagnosed I could barely imagine the next week let alone year. The idea of living with my conditions for any length of time was to painful and deeply upsetting. Four years on I can look to the future with the knowledge that my body will never function as it should but excited as to what new milestones I can achieve next.

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Posted in Archive, July 2016

“Who Is That Guy?”

After receiving several messages across various social media platforms regarding the pictures I’ve been posting, I figured it was time I addressed them. The quick answer to your questions is I found a really great guy.

Who is he?

Meet Damon, my ridiculously wonderful boyfriend. He’s rather fantastic, and sees my chronic illness as just part of me being ‘unique’. Whether I’m twitching and hitting him, panicking about new symptoms, or worrying about hitting my preorder requirements he’s supportive and helps to keep me grounded and calm. He has an ability to make me giggle no matter my pain levels, and understands that I would always much rather laugh at my conditions than make a big deal out of it.

Is he Coffee shop guy?

Nope he isn’t. However, our first date did start off in Costa Coffee. We sat across from each other and had a fab laugh before heading down to the local museum where I promptly spilt the remainder of my coffee down the front of my jeans. He had to spend the next few hours walking around with me looking like I had had an accident. Luckily Damon is equally as clumsy as myself, so laughing off incidents like this is a frequent occurrence.

How come you haven’t blogged about him?

Well I have mentioned him briefly in a blog a couple of weeks back. But I decided to hold off on blogging about him whilst our relationship developed. I’m blessed that not only does he understand that I don’t want my illness to hinder my life but that I also need to pace myself (which as you all know I am rather terrible at). He is really good at reminding me not to use my spoons up, and checking that I am physically up to whatever we have planned that day.

Posted in Archive, June 2016

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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Posted in Archive, May 2016

Contemplating Dating

For the last eight months I have been frequenting the same coffee shop several times a week. If the sofa is available, I curl up in the corner of it whip out my notepad and will scrawl away for hours on end quite happily. It’s my routine, and one that I thoroughly enjoy. Spend enough time in places like this and you easily fall into habitual conversations and friendships with other coffee lovers.

The other day whilst lost in my thoughts, one of the regulars, Mr. Latte we shall call him, came over for our usual chat. Towards the end of our talk he asked if I’d be interested in going on a date and getting to know each other better. It was a lovely offer, and normally I would not hesitate, after all what do I have to lose? This time however I did pause. There have been so many occasions in the last year were I have watched my illnesses blow up a date in seconds; which is fine, it means time is not wasted, but it’s emotionally exhausting. Putting my conditions aside, I could not help but wonder how I would handle it. After the events of the other week the idea of being out with someone I only vaguely knew was not a pleasant one.

I find myself rather irritated by my reaction. When did I start to let my health and fears control me?  I have always been the person to say yes and jump on board. This momentary new attitude isn’t the person I am, and is one I refuse to allow to become part of me. My stumbled over “I’ll think about it”, is not something I’ll do again. If I want to do something, then great off I go, if I’d rather not then fine, that is also great. Saying either yes or no is okay, but I shall not be this indecisive person any longer.

Posted in Archive, May 2016

Living with Ehlers-Danlos Syndrome Type 3

I don’t talk about my EDS much, though it’s a painful condition it’s symptoms are by far less noticeable than my Dystonia. This has resulted in me being more than happy to allow it to simmer away in the background. Often people think that the condition means I’m simply just ‘a bit bendy’. The reality is slightly more complicated.

EDS Type Three affects multiple parts of the body. In my case my skin is stretchy but tears and bruises very easily, I have multiple allergies, sublux and dislocate at the slightest thing and have chronic pain. When I talk about my subluxations and dislocations people often presume that I have to have fallen over, or injured myself in some way to cause it. This is not the case; this week I woke up on Wednesday morning to discover I had dislocated my thumb in my sleep. I laughed so much at this because it is frankly a ridiculous situation to find yourself in.13184635_898295980296182_140464853_o

Whilst the EDS and Dystonia are two separate conditions they impact each other. My jaw spasms will often result in a dislocation, this happens more and more frequently. Previously the two conditions acting up at the same time would have been enough to set a seizure off. It’s a worry I have in the back of my mind frequently, there is always a chance that the next dislocation will result in me seizing in an ambulance. However, despite a recent increase in dislocations I am currently just coming up to six months’ seizure free; which has me thrilled to bits.

Posted in April 2016, Archive

Vulnerability and Dystonia

Living with a chronic condition can have a detrimental effect on the sufferers attitudes or mental health. Many people experience disbelief from both the public and medical professionals during their fight to achieve an accurate diagnosis. Due to this many choose to refrain from openly talking about mental health conditions and passed traumas with doctors and those close to them. Often this becomes an early defensive behavior that is learned in on order to prevent pre-emptive judgement.

In 2012 during my fight for a diagnosis I found myself in the John Radcliffe for 8 days as I had developed Pain Triggered Non Epileptic Seizures, and my Dystonia had spread from my jaw to my eyes. I was very honest about my past with the consultants in charge of my care. I expressed that I had suffered physical abuse during my teenage years, that I had sought help and that I was now in a much happier place. I still view being honest with the doctor in charge of my care as a mistake however, due to the fact I had had this unfortunate experience I was informed all my symptoms were psychosomatic, and that I need neuro-psychiatric contact. As I’m sure you can imagine I did not take this well. I remember clearly stating that I would go talk to their psychiatrist, purely so I could jump through their hoops and prove them wrong.

Mere months later I had my diagnosis of Dystonia and a letter from my neurologist stating that my past experiences had no impact on my current state of health. That letter has not stopped doctors and acquaintances questioning me over the years though. On numerous occasions I have been asked if I am depressed. I am generally an optimistic person who loves nothing more than to laugh. Yet being repeatedly questioned has its impact. I am defensive of my health, I feel like I have to justify myself and that leaves me feeling vulnerable. For if people struggle to believe me when they can see the physical symptoms in front of them, what else will they close their mind too? Vulnerability is an emotion that too many sufferers of chronic illness experience. It comes in both physical and emotional forms. One of the best things a person can hear is ‘I believe you’. It is an empowering statement that allows us to relax and breath. Acceptance free of doubt opens up a line of honest communication. Something that we all need.

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