In December 2003 I gave birth to my 2nd Child. It was an emergency C-section. A few days after the birth on Boxing Day to be exact, I stood up and collapsed with what felt like my head had been split open and smashed with a hammer.

I only remember crying in pain which I had never felt before. I saw an emergency GP who told me my blood pressure was too high, gave me some medication and was just sent home.

From there the pain got worse, I then was having migraine attacks on top of the pain that was already there.

I developed severe vertigo, Tinnitus and a catalogue of other health issues.

I really at one point thought I was going to die and no hospital could tell me what was wrong. Every department passed me over to another. I got to a point where I was questioning myself and whether what I was feeling was actually real, or was I just making it up. It felt like no one believed me and medical professionals would look at me like I was making it all up. 

A Neurologist questioned something called "Post Epidural Headache" this is when complication of puncture of the dura mater (one of the membranes that surround the brain and spinal cord) happens and you loose the cerebral spinal fluid that protects the brain and spinal cord. However it was too late in time scale to say if that was the case or not as months had gone by.

For two years I was given different medication to try and help control the pain and pressure in my head, It felt like (and still does)  I have a cold tap of pins and needles running down my head. My brain feels compressed and constantly like something is pushing on it, I have constant pain in my neck where it literally cannot cope with the weight of my head. I would like to be able to take my brain out of my skull, give it a good wash in cold water and then put it back.

Eventually I was referred for an MRI (Only took them 2 years to offer that). I was then sent to Atkinson Morley where I met  a gentleman who was and still is my Neurosurgeon. He explained looking at my MRI that as beautiful as my brain is; there is a part of the brain at the base of the skull which has herniated downwards and pushed through. He believes I was born with the rare condition but during the Epidural because it (he believes) punctured the membrane around my spinal cord, the brain naturally tried to pull away from the skull causing mine to herniate even more than it already had, hence me collapsing on Boxing Day. I remember to this day walking out of the hospital and realising that there is an actual reason for my pain, and I wasn't making it up! The reality hit hard.

The Pin and needles I feel everyday is the CSF (Cerebral Spinal Fluid)  that has built up and compressed around my brain. Because the CSF cant move easily up and down it causes chronic pain at the base of the skull where it gets stuck. 

I was offered major brain Surgery called "Decompression Surgery" however the outlook was pretty bleak. Death, paralysation, lose of limb, possible lose of motoring skills and of course a long rehab period. this was not something I was prepared to take on as I knew I had two children to support and they needed their mum.

I declined the surgery however I know this surgery is open to me for all my life if it ever comes to a time when I feel I need it. Research shows that generally the surgery is not effective and leads to more surgery. It is not a nice process.

The biggest risk I live with is that the part of the brain that has herniated could shift and lay on my spinal cord which would cause Paralysation, but 'hey' we will hope that won't happen.

You cannot see my condition and it is now classed as a "rare disease". Naturally I have many other conditions that through research seem to be common along side the Chiari.

These include:

Hypermobility, Fibromyalgia, Raynauds in hands and feet, Rhinitis, Hydronephorsis, Tinnitus, Nerve problems, Migraine, chronic pain, Visual disturbances, Insomnia, Polymyalgia and so on.......

(if you can pronounce all of these your much better than myself!)

Life is hard at times and no one can see any of the conditions that I have. Living with pain and a condition that has little support or research can leave you feeling pretty lonely at times. 

However I have three beautiful children who keep me on my toes and remind me of what life is and how important it is to keep going. For a living I have my own business teaching Pilates which I love. Pilates was something that helped me turn my life around. It does help with my pain and has taught me to use my body physically in a way that is more beneficial for me. I studied to become a teacher in Pilates and now have the privilege of teaching people from all walks of life. 

I believe that because of my own difficulties and pain I have an ability to understand other peoples. When you are suffering with pain and there are no clear answers as to why, it can really take you down into a very dark world mentally. Sometimes we will never know the answers as to why we are suffering other times we will. 

I am supporting this Charity "Ann Conroy Trust" because there are no other charities in the UK for this condition. They purely run on voluntary staff so no one gets a salary! 

The charity offer advise, support and are there if you need someone to talk to. For some people when being diagnosed with this sort of condition it doesn't matter who they speak to friends/family/work colleagues, it is sometimes easier to talk to people who have an understanding or actually are suffering with the same condition/s.

Thank you so much for reading my story. Hopefully it will have given you a little insight to what I live with and what thousands of other people live with day in day out. Any donations will be hugely appreciated!!

There are few pictures below (nothing nasty) but each have their own meaning to us "Chiarian's" (as we call ourselves)

The Zip on the ribbon signifies the scar people have when going through "Decompression Surgery". This scar runs from just below the neck up into around the centre of the back of the head.

You will also hopefully have picked up that "purple" is the colour for "Chiari Malformation", this is also my favourite colour! 

Love Shona xx