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