A Gut Feeling

Its 1.30 am, hello ‘painsomnia’. I toy between catching up with Line of Duty or writing my next exert. I have so much I want to write about before my surgery, however monumental Line of duty is it’ll have to wait.

Considering my head is falling off and I’m like a real life rag doll, it may seem a touch unusual my next post being about my gastro intestinal system. It was one of my first symptoms and manifestions of EDS, going right back to age 11 and 21 years later nothing much has changed.

I’ve had a bad relationship with my GI system for over two decades. I have a deep destain for it and it for me. It’s relentlessly let me down. The unremitting nausea, abdominal pain that has seen me for hours on the floor wailing for it to stop, passing out from pain, hospital admissions, A&E trips, heartburn, reflux, uncontrollable bowel to now a none functional one. You name it, its happened and the worst part- it NEVER leaves. The only difference is some days/hours it’s more bearable than others. Do I know when those more bearable days/hours will be?  If only … it can strike at any given time.

Living with chronic GI issues has most definitely changed me as a person. It dominates all aspects of living almost like it’s screaming and vying for my attention all day, everyday. Some moments I can mentally switch off from those screams which I’ve learnt through years of practice and other times the screams are all consuming and there’s no getting away from them.

In the early days I tried to hide my symptoms as best I could. There were times I’d physically gag on food and struggled with swallowing. I’d roll my food around my plate mushing it up to try and make it a consistency easier to take. What I now know to be oesophageal spasms. Often putting my hand over my mouth so people couldn’t see me trying ever so hard to actually swallow.  The pains were far too often unbearable and I’d take myself off to lay down or have to avoid eating at certain times if I knew I had a work commitment or such like. Over the years I had unknowingly created my own management plan. If I knew I had a meeting at 2 pm there was no way I could have lunch before then or I would never make the meeting no matter how wobbly or hungry I felt. I was always the girl with the rumbly tummy in those meetings. Don’t you just hate when that happens?

This rigorous planning also rolled out in my personal life, if I knew I was going out I couldn’t eat for at least 4 hours before it or I definitely wouldn’t make it. Going out for meals was a thing of the past unless I wanted to roll around a restaurant floor or toilet (which happened) for all to see. The pains could last anything from a few agonising minutes into hours upon hours feeling like my bowel was being stabbed, ripped out, burnt out, often the pain that severe it would actually silence me. The worst part is not knowing again, when this will strike?, where you will be? and who will see? There’s no pattern, no trigger and often no warning.

Every aspect of living became a problem, hardwork, had to be planned and thought out. Even with the most stringent of planning there was no guarantee I’d make work, an event etc.  It was always the same flakey answer “Ill have to see how I am”. I always felt quite paranoid of what people thought, at the end of the day I had a set of symptoms but no name. Going to gigs was one of my biggest enjoyments, over time I found myself watching the person/s I went with and seeing how much they could enjoy themselves often with a tinge of sadness of why I couldn’t be like that.

Add to the unbearable pain unremitting nausea, a massively underestimated symptom. We’ve all had it either the precursor to a stomach bug, eaten a dodgy takeaway, drank a little too much its a nasty symptom with many cross over causes for me now the one common denominator being it’s always there, to differing degrees. Then we add in the generics- heartburn, reflux, diarrhoea, constipation, oesophageal spasms, and what a cocktail of treats that is.  My very own  gastric-mojito!!

I have had to change my diet dramatically over the years due to increasing difficulty with breaking down and digesting foods. My diet now consists of around ten foods on repeat, all gluten and soya free. My mouth waters at the prospect of steak, chunky chips and peppercorn sauce 😉 and there again comes the tug of war between mind and body.  The thing is I LOVE food, always have, sadly that feeling isn’t reciprocated.  One of the hardest aspects to begin with was how alone and different I felt. I couldn’t take part in what are probably the two most popular and social aspects of living food and drink. As hard as it is not being able to eat the foods I love and more annoyingly so that my limited diet still doesn’t take my symptoms away I do still hold onto the fact at present I can eat. Many EDSers have sadly gone into intestinal failure and are unable to manage solid food what so ever.  I know this is a possibility for my future given recent events but I don’t dwell, why worry about something that hasn’t happened yet?

Aged 23 me and my GI system had fallen out on a whole other level. I unknowingly jumped aboard what would be the bumpiest, unsettling and frustrating of journeys.

A seven year uphill hike trying to navigate the health care system began. It opened my eyes……

Like anything in life there is good, bad and indifferent and the same goes for healthcare professionals. Before I go on I would like to point out that I am a huge advocate of our National Health Service which is clearly being run into the ground (I’ll save the politics for another day). Being so heavily entrenched in it for so many years it was impossible not to see the chaos and dysfunction deeply embedded within it.

I stopped counting at 60 the amount of GI investigations I’ve had. Multiple cameras, catheters and balloons (that was an interesting day) in every orifice, MRI’s, CT scans, drank litres upon litres of barium, bowel prep, pill cameras, hydrogen breath tests, tracer studies, infusions, motility tests and so on.  For those reading that have gastro issues of any nature and have undergone investigations you will know how unpleasant gastro testing is in particular.  Your dignity is well and truly left at the door as you pop that hospital gown on and head into yet another invasive procedure/investigation.

Ironically the aforementioned tests were never the most painful aspect, it was the attitudes of GI consultants in the early days before I had a solid diagnosis that was the most damaging of all.

I had mentioned that I was experiencing pins and needles in my extremities,  feeling breathless and unwell . He looked at myself and my Mum with a puzzled expression and said my blood results were clear, absolutely nothing wrong with me. I left the appointment in floods of tears, this wasn’t the first time I hadn’t felt believed and I knew it wouldn’t be the last.  My legs were becoming increasingly numb and weak yet I walked back to my dads car hanging my head with distain, all these symptoms very real and happening and yet again not being believed. That weekend I collapsed at home, my legs were numb, lips grey and I felt extremely confused. I was rushed to hospital to find out the bloods I had were NOT normal and that I had dangerously low B12 on which treatment commenced.  At this stage we made a complaint which we had never done before only to receive a back dated letter from the consultant reporting that my bloods were not normal and I need to commence on intramuscular injections of B12 with immediate urgency.  The sheer cheek, back dating a letter to cover ones back.  Id of had much more respect with an admission of a mistake and a quick apology. Done. Did that ever happen …..nooooo the complaint seemed to disappear into the ether.

I can fully accept mistakes, we all make them.  Crikey Ive made a lot in my time.  Often I received clinic letters addressed to a different name, clinic letters that bared no resemblance to what the conversation entailed, inaccurate information which I can accept, to a certain extent. An overflowing NHS system mistakes will happen but when its your life and wellbeing at play its very worrying.

A new pair of eyes, it gave me hope. This time after years they would get to the bottom (no pun intended) of what was happening. When I was first investigated after explaining my symptoms to gastro No 2 his view was set well and truly on Crohn’s disease, everything fitted in he said. Chronic diarrhea, weight loss, joint pains, mouth ulcers, B12 deficiency “TEXTBOOK CASE” , he said. After many investigations no inflamation was found and the tide rapidly turned.  I couldn’t believe the shift.  Suddenly it became about my mental health, am I stressed? depressed about anything?…..”only my stomach ” was my answer to that.  Here we go again. I was then inadvertently accused of being anorexic, my eating habits questioned and weight loss. I could not believe this switch it was like talking to a different person.  Granted Crohn’s disease may not be the cause but something had to be and to jump to psychosomatic causes was rather damaging.  Around this time I had infusions as my iron was dropping and I was not absorbing the tablets, id even had surgery and adhesions were found wrapped around my bowel, gastritis had been found x3 times and various bacterias yet no pieces were ever put together I was only told “If we keep testing we are inevitably going to come across things”.  Id absolutely had enough, the appointments ended up causing anxiety in the lead up.  Knowing you were about to enter the lions judgement den, made to feel like the symptoms were in your head over and over yet I couldn’t give up, I knew how I felt, I knew this wasn’t right, I would NOT give up.  

Sadly I know of many more stories like my own and not just exclusive to EDS.  I am sure some people reading this post can relate. It seems over the course of time we’re going to healthcare professionals for help and being greeted with such questions as “What do you think it is?’, “Are you depressed or stressed?” it seems to be the first port of call which is costing lives.

Not feeling believed by the very people I was turning too for help put a question in my mind as to whether other people believed me.  Do people think this is in my head?  Over the course of years it was genuinely very hard to keep plugging on often hearing comments “Have they not found out what it is yet?”. “They need to sort you out”,” They need to move quicker”. Sadly the health service doesn’t have the fluidity it once did.  Things are missed, not joined up, mistakes happen, books need to be cleared ready for the next cohort of patients who have been waiting over 6 months for an appointment. Almost like the conveyor belt on The generation game.

Fast forward to gastro number 3- The Messiah. I am extremely fortunate to finally be under an excellent consultant.  He specialises in neuro-gastroenterology and is the most understanding and supportive consultant to date. Over recent years through having the correct tests its been proven I don’t absorb my nutrients adequately so no matter how much of the 10 foods I eat I cant gain weight like other people and struggle maintaining it.  I have been diagnosed with gastric dysmotility which sadly has progressed in recent months resulting in many A&E visits and further tests. Essentially the nerves in my bowel are not firing properly nor are the muscles. What should be a smooth rhythmic action is that of a disorganised, uncoordinated and beyond sluggish.  This explains why loading up on laxatives didn’t even work as its the nerves themselves. This causes a great amount of pain as food can back up and the fear with EDS is that obstruction or perforation of the bowel can occur as our tissue is weak.  I will soon be meeting with my bowel function nurse to discuss a neuromodular medication which they want me to try which acts directly on stimulating the nervous system alongside another medication.  I have this same dysmotility throughout my digestive system causing the above mentioned symptoms but much worse now in the bowel. Its essentially a failing colon.

It transpires that gastro-intestinal manifestations in EDS are rife.  Connective tissue is throughout our digestive system and is essential to the passive mechanical movements needed to complete digestion.  Connective tissue is also present around the nerves of the digestive system.  With our connective tissue being weak, fragile and abnormally produced this can create a variety of problems anywhere in the digestive system.

To read more about the gastrointestinal manifestations in EDS, please click the link below.

Gastrointestinal manifestations of EDS-

Now if you’ve got to the end of this extremely long blog post, THANK YOU and go and have a refreshment 🙂 This was always going to be quite a lengthy post which I found quite hard condensing (believe it or not). All my posts won’t require an interval and loo break, I promise.

Much Love

Ali xxx

Next Stop- EDS Diagnosis Day.

A Zebra Life…but why the blog?

First blog post Ali…….NO PRESSURE!!

I guess at this juncture I should explain why I have chosen to blog, my reasoning behind it and what I endeavour to achieve by opening myself up in the public domain.

Since being diagnosed with EDS, POTS, CCI and AAI my world has become smaller, as my capabilities have deminished due to ever increasing symptoms. There is a constant tug of war between my mind and my body.  My broken body is unable to keep up with my minds desires.  With that comes a minefield of emotions whereby these emotions can and do detonate at any given moment.  The unprectitblity of symptoms and capabilities adds further explosive devices to the field and before you know it you’re gently tip toeing through each day hoping a device doesn’t set off.  Essentially each day is dangerous, unpredictable and exhausting.

Through blogging I would like to address the emotional turbulence of  living with a variety of chronic illnesses.  How I feel, how I manage these feelings or don’t in some cases, what are these emotions and what triggers them?

The journey to diagnosis was far from smooth. It was 10 years of constantly being let down, judgements, deflation, anger, upset, fear and exhaustion. There were many times over the years i felt like giving up, at times i lost hope.  I knew something wasn’t right, I knew my body did not function like that of the majority. We spent 7 years intensively going round in circles within the medical world. Sometimes my hopes were raised when something was found “This is it, Im going to get better” only for treatment to fail or have no effect on symptoms and back to the drawing board I went.

When you don’t have a name for your symptoms it makes it even harder for people to understand and to some extent believe.  I found myself keeping a lot of my symptoms to myself, I became a master in disguising my symptoms.  Socialising became increasingly difficult.  I could make a plan with the best intentions but have to cancel due to my health.  I often felt people didn’t understand or thought I was picking and choosing what i wanted to go too.  I began to stop socialising as it was easier than constantly feeling like you are letting people down.

Work became increasingly difficult and I found myself adapting my days, eating certain things at certain times of the day in order to try and reduce symptoms, napping in my car and shorter days. Every single part of my life had to be planned with military Precision, yet I still didn’t know why. I really gripped onto my job for as long as possible but in truth I struggled for a lot longer than I let on.  I loved my job, I didn’t want to lose it.

I hope that blogging will give me the platform to be able to reflect on the past from constant testing, people not believing me, trying to act normal and keep up with others, the loss of my job and at times what feels like the loss of my identity.

From diagnosis to beyond!!  I will never forget ‘diagnosis day’ from the trip, to the consultation itself to all the emotions that came instantly and thereafter.  The diagnosis finally gave me validation and the jigsaw was finally put together. Once diagnosed with EDS in some respects medical doors opened for me and in other respects it became quite apparent of the limited knowledge within the medical community of such a complex condition.  Another battle then began.

I would like my blog to be a true reflection on what living with EDS is like day to day, my experiences of testing, appointments, medical professionals and things I have learnt along the way. I would like to go back to diagnosis day and certain tests with the main aim of helping others who are facing similar.

The hammering as I like to call it!! Shortly after my diagnosis of EDS came what felt like an endless stream of further diagnosis’s within a short period of time.  I remember at the time thinking ‘how unlucky can one person be’ spending 30 years with symptoms and no diagnosis and then they don’t stop coming.

The diagnosis of CCI and AAI was my biggest blow to date.  I really did struggle and still do accepting this.  Having a potentially life threatening/altering condition gives you a constant unease.  Not just an unease of symptoms but an unease of ‘am i going to wake up in the morning’, ‘ am I going to die at 32’, ‘will I be paralysed’, all very real feelings.  A further blow came when it became apparent how the operation was not carried out in the UK on EDS patients.  The only one positive that came from this is that it opened a door whereby I have met THEE most amazing people suffering with the same conditions from all over the world.  Now that I am forever grateful for.

I hope my blog reflects what living with CCI and AAI first hand is like.  I would like to post about the current situation in the UK on this surgery and the position patients are left in.  I would like to discuss the importance of having a strong network of people that really do ‘get it’.

In October 2016 fundraising began.  I personally had a mental struggle with exposing my story and vulnerability.  It did not sit well with me to begin with and I felt very anxious at the time of launch.  The response has been phenomenal, breath taking and overwhelming.  So many people came forward from friends, family, old school friends, past work colleagues and total strangers and have organised the most amazing events, offered support and love.  I will never forget this for as long as I live and has been a huge driving force in keeping me moving forward.

I would like to blog about the daunting prospect of fundraising, everything it entails behind the scenes, media and the power of people.

Rods and bolts in the neck you say???  All being well May 2017 will see me and my family take the journey over to Barcelona to undertake the biggest surgery of my life.  I will be having my skull fused to the top two vertebrae in my neck.  This is a high risk operation given the junction of where the surgery takes place and the spinal cord and nerves involved.  The operation will be tough, the recovery long yet necessary to save my life and ultimately eventually give me some quality of life back.  I will be away from home for 5-6 weeks before its safe to return to the UK where recovery will continue.

Documenting this journey is very important to me as a reflection of hopeful progress.  I would like my blog to discuss in more detail what the surgery entails and my trip to Barcelona for consultation. After surgery my partner will take over the blog  for a time documenting first hand the experience.  I hope to blog thereafter.

In essence my blog will be a little bit of passed, present and future sprinkled in for good measure.  I really do hope you enjoy my blog and walk alongside me on this journey.

Much Love

Ali xxx