Following a lot of chasing on my mums behalf and a lot of sleeping on mine we FINALLY got an appointment with Dr. Mathias in London who specialises in Autonomic Dysfunction. – Side note: for any of you reading this that is struggling to find someone that just gets it, I’ll make up a list of specialists to try and point you in the right direction! This new world is a complete mind-field!

So, the day of reckoning arrived, and mum and I drove up to London to meet the man (we hoped) would have some idea about what on earth was going on with my, ever shrinking, ever painful and completely lacklustre body. 

As we sat in the waiting room of the hospital my stomach was in knots, I was full to the brim with nerves, excitement, anticipation and fear. Fearful of what he was going to say…if this was going to be another dead end as had been the case time and time before, or would we finally have some answers – only time would tell!

Fortunately, my worst fears were not realised! 

For the first time I felt as though I was speaking to a doctor who spoke my language and wasn’t looking at me as some freak that wouldn’t fit into one of their boxes. 

When I explained that every meal was followed by nausea, pain, stomach convulsions, shaking and loss of consciousness… let alone the bizzare tingling sensation, as if the food was literally sapping the life out of me. He nodded along.

When I mentioned the aching in every bone in my body, the effort it took to just get out of bed, my new inability to stand up for long periods of time or incapability to focus on the books I used to love or even any Disney movie which used to be my go -too cure-all. He nodded again. He even laughed in recognition when I mentioned that despite the fact it was Britain’s hottest summer, I was sat there with ski thermals on, 2 jumpers and a coat… and yet, despite all these oddities, he didn’t seem at all dumbfounded. #firsttimeforeverything

The ‘Prof’ (as everyone seems to call him) was incredible. He diagnosed me with EDS and POTS as well as putting in an urgent request for 2 days of intense Autonomic Dysfunction testing #happybutscared. 

He explained everything in a way that made everything seem to fall into place, speaking so calmly you couldn’t help but feel at ease – I will endeavour to do the same in my following posts…

Apparently, I was so exhausted because my autonomic system had become confused. It was now baffled by simple tasks like how to regulate heart rate, blood flow, temperature and digestion. So ultimately, every minute of every day my body is working a million times harder… which obviously will have repercussions, such as the fatigue, headaches, nausea, reduced concentration and all the other rest of the joys of spring that I am currently experiencing. 

He was even able to explain the paralysis and subsequent ‘hypersensitivity’ that the Nero-physiotherapists were battling to get on top off. According to the Prof, all my nerves had god a bit perplexed and therefore whilst they initially tried to just sleep and take a time out, they were now trying to find their happy medium again… but for the time being they had overshot slightly. #bringonthebuzzing

Elation and relief to finally have some understanding of what was going on with me is an understatement. Unfortunately, it was short lived as with his next sentence the Prof sent my hope crashing down like a tonne of bricks. There is no cure. One does not exist for Autonomic Dysfunction #whatashitshow.

After a long, awkward silence the Prof did attempt to negate this doom and gloom prognosis and after a while he did manage to raise my spirits. Eventually he convinced me that this was something I could manage and will not have to dominate my life. He reassured my mum and I that we will get to the bottom of this ‘thing; that had stumped so many before him. 

Whilst he couldn’t give us any hard and fast quick fixes due to the lack of a full diagnosis as to my specific type of Autonomic Dysfunction he did give some helpful tips and tricks to try and manage in the meantime:

1. Salt is my new best friend
2. Drink water like a camel 
3. SQUEEZZE – when you start to feel faint squidge your hands and tense your legs for 20 seconds to try and stop the blood pooling 
4. Steroids #gains

Here’s hoping these will keep me a bit more ‘present’ day to day as at the moment i’m still insistent on living in a little fairy world, a million miles away #here’shoping. 

The next step is to undergo 2 days of intensive testing to try and get to the bottom of what on earth my body is doing. 6 hours on Day 1 followed by a further 4 hours on Day 2 is what the doctor has ordered. 

So stay tuned for a full insight into Autonomic Testing #yourewelcomefreinds

Love S x 

 “I don’t know what my future holds, but the world is wide and I want to make some memories.”

Young Donna – Mamma Mia 2, Here We Go Again!

Well, what’s a good story without a sequel? Unfortunately, as is usually the case with the second instalments of movies, the same rings true for my stay at hospital – Round 2 is never good…. (with the exception of Princess Diaries of course!)

Sunday night swung around, and I decided to have another little ‘episode’. This time mum tried her best to prevent me from going back to that god-awful place (sorry NHS) but a short phone call to 111 and the blue lights were en route #travellinginstyle.

The paramedics did their initial observations and this time were slightly concerned with their inability to read my heart rate and blood pressure (always knew I was cold hearted ;)), combined with the slight issue of paralysis that had decided to take hold once again. Once my body decided to stop breaking all their equipment and play ball, they did manage to locate my vital organ to subsequently discover it was running very slow… as in slower than my Olympic icon Mo Farah at a cheerful 32 BPM #sorrymo. So once again I was whisked away back to hospital and straight into the acute ward #hellodarknessmyoldfriend. 

The next few days were a blur of nurses, registrars, phlebotomists, cardiologists, neurologists and physiotherapists.  I think it’s safe to say I received every single test under the sun, from CT’s MRI’s, X-ray’s, Ultrasounds, Blood tests and even a lumber puncture (side note: I would not recommend as it was absolutely diabolical). And yet, despite being a pin cushion and lab rat for a week we were still no closer to understanding why I was still impersonating a rag doll, had developed a nasty habit of passing out (and I mean a stone cold, unresponsive sack of potatoes kind of mood) every time I consumed anything – even coffee, melon or kiwi which one would think would be innocent…think again. Nor were we any closer to figuring out why my resting heart rate sat as low as 32 bpm when I was awake, or why it dropped further to 26 bpm when I had a nap, or why my blood pressure was through the floor….

On the plus side, at least I can now say with more certainty than most female university students that I am definitely not pregnant, nor do I have any STD and most certainly have not contracted AIDS #itsthelittlethings . 

Four days into my stay and following several embarrassing escapades of attempting to drag my lifeless legs to the bathroom by my myself following my indigent refusal to use a commode aka bed pan. My body finally decided it was capable of enacting some usual functions. The feeling in my legs began to come back, and slowly but surely, I was able to gamble around the hospital on my Zimmer frame and make some friends.

Here I must pause to mention my in-house grandma, Doris, who made my nights at hospital that little more bearable when my Mum was no longer allowed to sit with me. Doris, an ex-hospital volunteer was probably one of the most opinionated, genuine and hilarious woman I’ve ever met and quickly became my confidant regarding all things hospital life; From the nice nurses, to the questionable food and even the quality of our fellow ‘ward-mates’. I can say with absolute certainty (something that was missing from elsewhere in my current situation) that had it not been for Doris, my stay at hospital would have been far less bearable. I cannot thank her enough for sitting on my bed with a cup of tea and biscuits at 11pm to wondering in at 5am with her pills to make sure I’d had mine too! #angel

My mobility improved over following days, seeing me graduate from Zimmer frame to crutches. Until finally, a week later I was released from hospital.

Whilst the nurses were lovely, and I will have missed out on hearing how Karen’s date went, or Tracy’s wedding, I’ve never been happier to see the back of a door. 

However, the slight catch, we still left with zero diagnosis, zero idea of how to manage the fact that I still  couldn’t stay conscious or coherent after food, why I was barely able to walk and had about as much energy as someone who had just finished the London Marathon! 

Nevertheless, I was sick of hospital and so extremely chuffed to be leaving. All the consultants could advise was to stay hydrated and try downing a pint of water before every meal to see if that would help raise my blood pressure, eat salty crisps, oh and if you feel dizzy ‘just squeeze your hands’ (insert eye roll). We were then told to wait for the referrals to neurology, cardiology and autonomic dysfunction. 

So, let the waiting game begin… or not if my mother has anything to do about it.

Update coming soon

Love S x 

“I believe that everything happens for a reason…and sometimes good things fall apart so better things can fall together.”

Marilyn Monroe

Leading up to ‘D-Day’ of July 2019, I was a happy, healthy, active 20 year old girl, extremely excited for the future which seemed to be getting better and better… I had just returned from the most incredible holiday to Morocco with my mum and grandma as a celebration for achieving Frist Class honours in my Second Year at university.

A week later I hopped on a plane again, this time with my best friend for a ‘soul hol’ (as it became known) island hopping around the stunning islands of Croatia. 

The day I arrived home from Croatia, I travelled into to London to undertake an interview with a Magic Circle Law firm where I hoped to gain placement for next summer. On the train en route home, I received a lovely email from one of the Partners that interviewed me suggesting the interview had been a success, and to add a cherry on top, the train journey concluded with a phone call from a top criminal chambers in London accepting my application for a highly sought after mini-pupillage to commence in the coming weeks. It was safe to say I felt invincible.

Never suspecting a huge curveball was luring in the near future.

On the 10th July 2019, my world came crashing down.

What I’ve failed to mention in amongst describing all the excitement of that day was the persistent blocked ears, cramps in my stomach (and sorry if this is TMI…but I did warn I was an open book) or the horrific diarrhoea I had endured. Nor did I mention the unusual absence of appetite or the aches in my legs as I walked to and from the trains.

By the time I got home, the fairly lacklustre girl who then attempted to watch Greg and Amber ‘crack on’ in that evenings episode of Love Island was, despite appearances, beginning to feel quite unwell.

The culmination of the ‘dumping’ proved to be too much for my little body, which subsequently proceeded to collapse into a heap on the sofa, passed out and incapable of moving.

Once my mum realised what had happened, I had what she could only describe as a ‘stroke like’ appearance, with the right side of my face drawn up into a grimace and my hands gripping at my chest with little T-Rex hands. #goodlook.

It was at this point that she called 999.

Once the ambulance arrived my condition just went downhill from there, I quickly lost the ability to speak, and open my right eye…. then my left.

Then the ability to move my arms disappeared, shortly followed by my legs. As the paramedics conducted their preliminary observations I continued to deteriorate until I was impersonating rag doll, completely incapable of moving, opening my eyes or communicating.

The out of the blue, my stomach decided to take on a life of its own.

My stomach began to cramp, causing a ‘sit up like action’, jolting my whole body up and down – This spasm, cramping, bizarre ‘fit’ like thing proceeded to last for the next 5 hours. #bringontheabs.

I came back to consciousness in Hospital, surrounded by my parents, several needles, tubes and wires covering my arms and legs, and being blinded by bright iridescent lights.

Terrifying would be the only word I could use to describe that wake up call. 

After a few nights in hospital and several blood tests later I re-gained feeling in my arms and legs (THANK GOD) and after managing to wobble around on the ward a few times, first on a Zimmer frame and then on crutches I was discharged, absolutely clueless as to the cause but relieved thinking that it was all over….or so we thought.

After a lovely weekend at home, consisting of sitting in the garden with some friends, drinking plenty of decent hot chocolates, catching up with relatives and playing with my dogs we took another downward turn on the Sunday evening, having another episode with symptoms reminiscent of those seen a few days before.

One again the ambulance were called and hello hospital… this time my stay was going to be a while longer. 

I hope your all still with me! Details of the worst ‘stay-cation’ ever coming soon…

Love S x

Sometimes I feel like a human pin cushion.

Juliana Hatfield

So the day arrived.

I’d packed my bags.

Had no breakfast or drinks (other than water) as requested…

Then got in the car for an extremely tentative 30 minute drive into London.

I was ready (as you ever could be) to be pricked, poked and put through my paces in an effort to discover what the broad term of autonomic dysfunction actually meant for me. 

In an effort to calm my nerves i had attempted to conduct some research to try and discover what I was in for.  To my dismay and increasing agitation I couldn’t  find anything other than a rather menacing image of a table with straps that resembled those torture apparatus you see in history class.

As a result, one could safely say I was feeling rather apprehensive as to what the next 6 hours might have in store…

Day 1:

So first things first = Paperwork.

After filling out the standard full medical history and pretty much signing my life away, the scientist swept me away into a small cold, white room which had a frightening resemblance to my perceived interpretation of a prison cell – This was where I was to spend the day…

I guess the question on the tip of everyones tongue  is – what the hell happens!

First things first, the lovely scientist sat me down and explained what was going to happen throughout the day (did i mention this test was going to be 6 hours long!)

Her explanations helped to calm my nerves massively, as at least now I knew what to expect (to some extent at least).

She made me promise to tell her every symptom I felt, even the smallest headache or niggle and assured me that if anything got too bad then the test would stop immediately. Whilst I knew this would be the case, hearing it out loud was super reassuring. 

The scientist explained that Day 1 would consist of 3 sections:

1. Stress test
2. Tilt Test
3. Exercise Test

And so…let the 6 hours commence!

Challenge 1: Spot the pulse…

It quickly become apparent that throughout the testing i was going to resemble a robot. After changing into a rather fetching hospital gown i was swiftly wired up to the most intricate ECG monitor I have ever seen, with millions of stickers and wires covering my chest, wrists, ankles and hips. A standard blood pressure arm cuff was wrapped around my forearm, and yet another BP monitor was strapped to my wrist and finger.

Challenge one of the day occurred shortly after the monitors were switched on. According to the machines i didn’t have a heart #coldhearted, a pulse or a blood pressure…According to technology i didn’t exist!

After swapping monitors a couple of times, warming me up with hot water bottles and trying the classic switch on / switch off technique we eventually got them to work. And so, all wired up we were ready to get started. 

Test 1: Chill

This one was super easy! #goodstart.

All you have to do is lie there.

The aim here is to calibrate the machines, give the scientist a base line from which to work, generally make sure you’re comfortable and double check that all the machines are still working. 

After lying on the bed surrounded by monitors and chatting away to the scientist (who I quickly discovered had only got married last week!) the 20 minutes had passed and it was now time to start the real stuff.

Test 2: Maths Test  

This was slightly rogue and a rather unexpected challenge – I haven’t had to do mental maths since GCSE’s!

Apparently they are testing how emotions and stressful situations affect your body. – How to elicit stress 101 = maths!

The concept is simple really, they ask you some mental maths questions and monitor you whilst you answer (don’t worry you can’t pass or fail – Thank goodness!)

However,  if you’re going in for some autonomic testing any time soon, maybe take a look at your times tables as i’m sure my score was DIABOLICAL!

On the bright side, aside from the beeping starting to become particularly irritating, there was nothing painful here so happy days.

Test 3: Breath Test

During this test you have to blow into a tube for an extended period of time (I think it was about 40 seconds) trying to push the little arrow as far up as possible.

They are investigating what respiratory stress does to your autonomic system – aside from feeling a little dizzy, which I was now becoming quite accustomed too, it was pain free too. Yay!

Test 4: Cold Test

At this point I was beginning to get quite tired and very non-plussed by the whole situation. I even told the scientist that today was turning out to be much less traumatic than I had imagined…well trust me and my big mouth!

This next test was HORRID – safe to say I cried, a lot.

They wrapped my hand in a HUGE icepack. The aim was to keep your hand in the ice for as long as possible as they monitored your thermoregulation.

Safe to say I failed this one horiffically.

My hand remained ‘on ice’ for 15 seconds before my eyes were watering so much you would’ve thought I was having a full on meltdown!

I was in a lot of discomfort, with shooting pains up my arm and a burning sensation across my entire right side, my fingers became progressively paler until they went completely white.

Fortunately, whilst I tried to tough it out for longer, the scientist wasn’t having it and only 20 seconds later the ice pack had been exchanged for a hot water bottle and blankets whilst we waited for my body to stop shivering and my vital signs to come back to normal. #whoops.

I personally didn’t enjoy this one, but generally I run a bit cold and since this all began I have been constantly been battling with my thermoregulation – and so that’s unsurprising really.

Nevertheless, I should mention, this test is nothing to be fearful of as there is nothing inherently painful about it – my body just wouldn’t be partial to a trip to Antarctica anytime soon!

That marked the end of Section 1 of Day 1 and so now on to Section 2 #norestforthewicked

Test 5: Tilt Test

Once i had retuned back to a normal temperature it was time to go all wobbly again.

For this test the scientist lay the bed down flat, I popped my feet on the footplate at the base of the bed and then she strapped my legs and chest in so I wouldn’t fall off the bed once it began to move. – See the torture-esq diagram at the top for a visual aid 😉

This sounds so much worse than it is.

Basically its like a big seat belt and you’ll be so thankful for them once the bed starts to move.

Once safely strapped to the bed, in the scientist slowly ‘tilts’ the bed so you are almost standing (not quite) – this is where the straps and footplate come in handy as otherwise you would probably take a tumble!

All you have to do next is hang about at this angle for as long as you can.

Personally, I came over super dizzy and lightheaded, went unconscious and next thing i knew i was lying back down again –  but… never mind!

Test 6  Bike: 

FINALLY we could see the light at the end of the tunnel, and this was a test I was sure I would be able to complete successfully.

This test requires you to lie on you back whilst they lower a bike (which is hung on the wall) in front of you. Then you need to pop your feet in the pedals (which are now in front of you) and just cycle.

In all honestly it was a bizarre feeling… whilst i’d spent many an hour on a waatbike, the concept of lying down and exercising was rather alien – thankfully they give you a chance to get used too it and they’re not expecting olympic level splits!

Once accustomed to the bike, the test begins; 3 mins at a low wattage, after a further 3 minutes they increase the resistance and then again until you have completed 9 minutes of pedalling.

The whole time you are linked up to all the machines and constantly asked for any symptomatic changes, whilst also being observed so nothing to worry about here either.

And so finallllyyy, that concludes Day 1 of testing… only one to go #homestraight

Safe to say it was EXHAUSTING and I slept the entire car journey home, however I can say with absolutely certainty that it was not painful, traumatic, scary or anything like I feared. 

Day 2:

You become a champion by fighting one more round. When things are tough, you fight one more round.

James J. Corbett

After a rather restless night it was time to face the music again. Happily i knew today wouldn’t require a whole 6 hours of poking and prodding…Just 5… #easypeasy

Test 1: ’Complan’ meal with Tilt: 

So this one was more grim than painful. That being said, thats more down to personal preference as i’m not partial to vanilla flavoured milkshakes #chocoholic.

The test itslf is really simple, all you have to do is drink the shake and see what happens #simples.

Unfortunately due to my specific presentation of Autonomic Dysfunction i was experiencing stomach pains, cramps and convulsions within 5 minutes and was unconscious within 10. Therefore, i can’t really give you any insight as to what happened after drinking it #sorrykids.

However apparently they just monitor your Blood Pressure and Heart Rate #clueless.

Test 2: Bloods 

The final test was meant to be a simple blood test, and so you would think = no stress.

However, classic me, this couldn’t possibly be the case!

6 attempts later conducted by 3 different nurses (including the head of phlebotomy) it was pretty apparent that my  veins were not playing ball.

Apparently, they’re ‘too flexible’ and ‘like to move’ out the way of the needle… clearly i like to keep all my essential juices inside where they belong!

Thankfully the necessary tests could also be conducted on a 24h urine sample #thejoys.

So bring on the bucket and pee pot… oh and the 24h heart monitor and automatic blood pressure cuff

End of Test #bloodyfinally.

In conclusion, in one word i would describe the testing days would be LONGGG.

Whilst it wasn’t exactly pleasant – as the aim of the game is to find what sets off your symptoms and therefore (in my case) it provoked many an episode of unconsciousness, nausea and convulsions… that being said, all in all it wasn’t a particularly painful or traumatic experience .

Whilst I can’t say it would be something i’d be thrilled to repeat… its also not not something that would elicit a flat out refusal if presented with the prospect of a re-trial.

Hopefully that will help put some minds at ease…

Love S x 

Hi Everyone and welcome to Rediscovering Healthy! My name is Samantha, but everyone calls me Sam. I’m a 21 year old from the UK who loves food, fitness and travelling!

I have already been many things in my life; a daughter, a friend, a student, an elite sportswoman and as of August 2019, i can add myself to the group of ‘special’ humans who have a chronic illness….happy days.

Apparently, i have what is known as The Trifecta.. consisting of EDS (Ehlers Danlos Syndrome, POTS (Postural Orthostatic Tachycardia Syndrome) and Autonomic Dysfunction.

This troublesome trio has given me some super powers… Party tricks? Have a look and see what my joints can do! (Thank you hEDS), First person to pass out in extreme temperatures or maybe just standing up? (Thank you POTS) and cheapest date ever? (Thank you Autonomic Dysfunction).

But, that being said it can also be a royal pain in ‘da booty! Prior to this little bump in the road i was studying Politics and Journalism at Cardiff University (UK), on track to gain a First Class Honours degree. However, this September will not feature my embarkation on my final year at University but a (temporary) leave of study as i try to ‘Rediscover Healthy’

I am beyond determined to get back to being ‘me’ (whatever that new form will be). I’ve always been a great believer that a bit of exercise can transform a day, that food is fuel and that life is to be enjoyed – and so going out with friends and sharing a piece of (gluten free) cake is a must!

So join me on my journey from my current situation being ruled by restrictions imposed by EDS, POTS and Autonomic Dysfunction to Happy, Healthy and Strong!

More Me…Pre Trifecta!

I’m one of those weirdos that is in LOVE with sport and physical activity. Personally, i’ve been a competitive swimmer and runner since i was 9 years old, even getting the opportunity to wear a GB vest #lifegoals.

If i’m not on a run or in the gym then you can find me walking my Newfoundland puppy (Bertie) with my Mum

Or in the Kitchen making up some concoction to munch (have i mentioned i used to always be hungry!?) and obsessed with fruit #naturescandy

I’m an open book so in order to keep updated with the real, unfiltered and (probably) emotional truth behind discovering my new life living with this Trifecta subscribe below.

You’ll be hearing from me real soon.

S x