Chiari Blogs: The Ann Conroy Trust. Who are they?

Hello everyone!

If you read my first post this month, you will already know that I have decided to write about my “experience” living with a brain condition. (If you haven’t seen that post, you can read it here). Today I want to take some time to tell you about the charity that I am supporting on my JustGiving page. 

Who are they?
The Ann Conroy Trust is the only charity in the UK that offers support, training and education to medical professionals to broaden their knowledge and understanding of Arnold Chiari Malformation and Syringomyelia. (Visit their website for more info on this).
Further to their research and professional training, they offer support to people with the conditions and their families too.

How did I find them?
I had been diagnosed for over a year before I had heard about The Ann Conroy Trust. I was visiting a relative in a hospital regularly and his nurse happened to mention the trust to me as if I should have known about them. It took me a little bit of time to give the helpline a call because I didn’t exactly know what to say. I knew very little about the condition, I knew how I was affected but that was it. I had worries, I had questions and quite frankly I was scared of the unknown. A really soft, friendly voice answered the call and within minutes I knew that I was talking to a wonderful lady and that some of my questions could be answered. More than anything, she was an understanding ear, someone that has heard pretty much everything I had said over and over before but still had the patience to let me flood it all out. She offered advice of how I can help myself and where to go medically. (They have affiliated surgeons with the trust). Since that first call with Lynn, I have joined the group on Facebook. From this group I have met up with someone local to where I live who has become a friend and an inspiration. She really does help me “cope” and I would have always felt lost had I not found the Ann Conroy Trust!

They deserve every single bit of support. The conditions are rare and easily over looked or not even recognised. (In my case I was apparently suffering with “typical migraine” until I had MRI scans)!
Awareness is needed!

How can you help them?
If you would like the chance to win a special hand-made (by me) cuddly Elephant (it was the most popular choice when I asked on the trust forum and my family and friends). Please visit my just giving page and make a donation. (Every penny will help) and for every donation made, I will be making a small heart – these will be stuffed into the Elephant.  In the comment section please state that you would like to be in with the chance to win. *please note that anyone that wishes to remain anonymous will unfortunately NOT be entered into the draw*. The draw will be made on Wednesday 1st July 2015 at 7pm GMT. REMEMBER, YOU MUST LEAVE YOUR NAME IN ORDER TO BE IN FOR A CHANCE OF WINNING!  (if possible leave twitter/facebook/instagram details too so I can easily contact you if you win).
Disclaimer: I have not been asked to write this post. All views are my own and that is why I would like to spread awareness and hopefully raise some money for this wonderful charity.

Chiari Blogs: It's all gone wrong - but not for long! Back to blogging.

Hello everyone!

I scheduled some posts to come on here this month as I have had quite a lot of things happening AND a small matter of a charity crochet elephant to make (read about it here) but stupidly I did it wrong so the easier thing was to just cancel them all on my phone and I didn't get round to sorting it properly until now!

I have finished the elephant (aptly named Juno) apart from the final stuffing and stitching which I will be doing at the last minute as I am using all of the little hearts that I am also making for each donation as part of the stuffing (I have lots more to make).

Over the next couple of weeks, well, the remainder of June, I will be sharing more hospital related posts, advice on how I "cope" with stressful hospital situations, a list of things for a hospital bag and other things related to dealing with being in and out of hospital. And living with a chronic condition.

I'm so sorry for the huge gap between posts this month. This has been the first time that I have turned on the laptop to have a proper look.

Please, please take a look at my other posts this month here and here

Love and hugs, as always.

What is Chiari Malformation?

Hello again,

You might have already seen my previous posts and wondered, what on earth is Chiari Malformation?

You’re not alone! I’m doing my little bit to raise awareness as I am a “chiarian”, a “chiari warrior”, whatever you want to call it, I have chiari!

The science.
“In this condition the cerebellar tonsils of the brain descend through an opening in the base of the skull (named the Foramen Magnum) into what should be a space in the spinal cord. This can cause compression of the brain stem and disruption of the flow of cerebrospinal fluid (CSF) at the top of the spinal canal. This can cause a number of symptoms: pain and tingling in the limbs, dizziness, nausea, balance problems, visual disturbances, problems swallowing, pressure headaches, which worsen when straining, laughing or coughing” (Source: The Ann Conroy Trust (ACT) you can also see more facts from them on their Facebook page here)

How does it affect me?
Firstly I must stress that this condition varies and it affects people in so many ways.

• Headaches that range from migraine type headaches (I am a migraine sufferer as well) to a dull ache that feels like a rod going through my head and out of my neck
• Dizziness. Different floors and lighting can make this work and on my most recent trip to London I found that the tube made it worse.
• Pulsing in both eyes
• Pins and needles / strange sensation in upper and lower limbs. – Arms – the top of my arms feel as though they are heavy and the sensation when anything touches them is like having a thick wet suit on and something rubs across it... I get really bad pins and needles in my hands and my feet. 
• Sometimes usually if I’ve been shopping and carried lots of bags I have had squeezing down the back of my neck really hard and pressing my shoulders – it also happens on bad days when I am sitting upright.
• Slurred speech 
• Memory loss and confusion 
• Exhaustion/tiredness

These aren't all present all of the time but they are what I have experienced for the last three years and continue to experience. At the time of my diagnosis I was also diagnosed with another condition called intracranial hypertension (often abbreviated to IH, IIH or BIH). This is due to high pressure inside the skull. Recently I discovered that I have something else going on in my ‘brain space’. I am not really comfortable discussing this at the moment because I don’t really know what it means and I have not had my follow up appointment. All in all it is hard to pin point what condition causes what symptom and like I said, it seems that it affects people differently. The condition is complicated and quite rare so there isn't a huge amount known about it.

Is there a cure?
The simple answer is: No.
There are surgical options and medicines to help with the symptoms. The success rate varies. There is no miracle cure but people can go on to live a relatively “normal” life. This makes me live in hope for my future. There are so many things that I want to do and achieve. I hope that this is just a difficult spell in my life and that one day I can go on to achieve everything that I had set out and worked so hard for before I became really ill three years ago.

I hope this helps you to understand a little bit more about what makes me, me. I am not alone and it is a great comfort that I no longer have to endure this condition alone. I mean, I have got the most supportive family. I love them beyond words and they are the biggest safety net that catches me when I fall but to know that there are other people out there that literally know how I feel, have experienced it and can offer practical and emotional advice is such a huge deal. Thank you ACT!

If you would like the chance to win a special hand-made (by me) cuddly Elephant (it was the most popular choice when I asked on the trust forum and my family and friends). Please visit my just giving page and make a donation. (Every penny will help) and for every donation made, I will be making a small heart – these will be stuffed into the Elephant.  In the comment section please state that you would like to be in with the chance to win. *please note that anyone that wishes to remain anonymous will unfortunately NOT be entered into the draw*. The draw will be made on Wednesday 1st July 2015 at 7pm GMT. REMEMBER, YOU MUST LEAVE YOUR NAME IN ORDER TO BE IN FOR A CHANCE OF WINNING!  (if possible leave twitter/facebook/instagram details too so I can easily contact you if you win).

Don't forget, you can find me on

• Facebook here
• Twitter here
• Instagram here

I promise I will give regular Juno updates!

Love and hugs (and spoons for any chiari people reading this!)