Chiari blogs: Tips for a stress/anxiety free consultation

Something that has bothered me for so long is that when patients enter the medical system (ie they go to hospital/ they are ill/ they are diagnosed/ whatever stage they are on) they get bombarded with information. If you are like me, you will be in this place feeling horribly desperate and ill, being told so many different pieces of information, having so many procedures mentioned and I guess it seems that it is expected that EVERYTHING is soaked up, stored and processed. If you are like me, you probably won’t "soak up" much (if anything) during such times and remembering what I have been told is almost impossible! Also, as the years have passed, my ability to retain things has diminished quite substantially which is incredibly frustrating! – you can read about my "story" here.

So, along the way I have had some pretty horrendous experiences but something that has been consistent is the note taking that my mum has done from pretty much day one.

I am lucky that my Mum knew from other people’s experiences that we would benefit from taking notes from the very early days.

I guess that is the next point. Have a “consistent person” attend appointments with you. Someone that is able to speak out when required, make notes so you can focus solely on the information you need to give and receive and most importantly, someone who can stay calm and be a calming influence in stressful situations!

Take a puzzle book or colouring book or anything else that can occupy your mind for a long while. Remember that things that require batteries have a tendency to run out when you least want them to! I have been delayed by over 3 hours before for a consultation and believe me, it’s not fun if there’s nothing to do but stare at leaflets and walls!

Be prepared for a first consultation

• Write a brief medical history to give your consultant an outline should they ask.
• List your symptoms and why you are there to see the consultant. Have a rough time span if possible. Also list if there is anything that makes the symptoms worse/better.
• List your medication. Include doses and times taken.
• Be prepared to listen and have physical examinations carried out if needed.
• ALWAYS ask to be copied in to letters etc. It is your right and those letters can sometimes fill in the gaps that your note taker might have missed or answer questions that you forgot to ask!

This is an example of how I would type up the notes from the first meeting.

Header: (my initials) Hospital notes

Date:     Consutlant:                         Department:

Notes from (consultant initials):

Next steps:

Next consultation: (just aproximately how many weeks/months when s/he wants to see you again). It's so you have a timescale.

Have a plan for future consultations

• Any unresolved issues from last consultation.
• How I have been since the last consultation. Is there any change or noticeable differences? Anything significant to note? (Did the consultant ask me to do anything in particular – give results)? – if there is another professional involved that needs cross referencing, do that here.... write it separately including the date you saw them so you can flick to your file if needs be... be prepared to in case the notes haven’t reached them yet!
• Questions and any immediate issues from this consultation

Set up a filing system for all of your letters

• Keep a record (in a file) of all of your consultations with EVERYONE involved in your care. It is not unusual for other people to come on board and different departments to cross over. I get by this by having a file with dividers in. One for each department or professional. I.e. GP, Neurologist, neurosurgeon etc.
• After every consultation write down your feelings and queries. I have only recently started to do this. After a series of “tricky” consultations, I started to get affected by the sheer thought of speaking to ANY medical professional. I didn’t sleep well, I started to get anxiety and I was just not “myself” before OR after for probably a week! I felt as though I was not being heard and that my feelings or wishes were not one bit taken into account. It was as if I was talking to a brick wall so I started to write down what I felt and that directly feeds into the prep for the next consultation. Also, part of the physical examination is having my eyes examined quite a lot. It is extremely hard to explain how that has affected me but imagine having someone that you have lost trust in being right...in...your...face. I promise you it does NOTHING for heightened anxiety. I used to await my appointment with dread and in my head it was totally irrational. I also felt confused and lost. This just had to stop and although I still get anxious, my stress levels are less and I am easier to live with since I started to have my own little reminders to feed into appointments or just realise that it was just head of the moment from the awkwardness of the day - on the day. I hope this makes sense. I guess it's just a way for you to personally document things and work out what you feel are the most imortant things to discuss because you have to remember that you can't possibly fit everything into a consultation all of the time.
• Correct any inaccuracies in letters! THIS IS IMPORTANT! Those hospital notes are the “book of you” that medical professionals get to read before seeing you. If they are wrong then you are not necessarily going to get the most accurate care!

My file is set up like this:

• First page: Important hospital numbers
• NEXT APPOINTMENT letter, plan,
• Dividers with departments on (including GP)
• Appointment letter,
•  Notes, 
• Consultant letter,
•  reflections.
•  Plan for next consultation.

I really hope that you have found this useful. I am still refining my "tools" but since I have been doing these I have felt more in control of myself and able to keep on track. I found that with every consultation I couldn't deal with all of the information that I was being told on top of my emotions. I used to say that it was easy for Doctors and medical staff because they can walk away. It's so wrong to tar everyone with the same brush. I have been cared for by so many amazing, positive people but it was just that one person seemed to be more "powerful" than others. Now I have a little bit of ownership of myself back. Ok, not medically but emotionally. There is only one person who can control that and that is ME! 

I have learnt so many of the little tricks that I have mentioned by seeing chats and of course having conversations with people from the Ann Conroy Trust. They have really been incredible in providing a safety net of people going through very similar things and just a cosy little place where it's normal to be scared/worried/confused/everything in between! 

Please read my post about The trust and if you'd like to win one of two hand crocheted Elephants that I have made, please go to my justgiving page and make a donation (all ts and cs are on there).

Thank you for all of the love and support.

Love and hugs.

Chiari Blogs: The "emergency"/hospital bag.

Hey everyone,
Here I am again continuing my month of hospital related posts.
I decided to spend this month writing about all things hospital related because I am raising awareness for the Arnold Chiari and Syringomyelia UK Awareness Month in association with The Ann Conroy Trust. Please visit my other posts by clicking here, here and here.

Having had a fair few emergency trips or last minute admissions to hospital, experience has proven that it is useful to have a small bag packed with some essentials for the event of a last minute stay. It eases the stress for your loved one(s) having to go through your stuff trying to find the items that they think you will need.

Here’s what I have in mine.

Important information.

• A file that contains: 
• A copy of any important documents related to your medical situation.
• An up to date list of medication including doses and times taken.
• A list of contacts.
• Note pad and pen – make notes! ALWAYS make notes when you can or get someone to. It’s a good idea to have important numbers written into the book too just in case. Also helpful for you to make a list of things that you need if you have to stay in for any length of time. I.e. phone charger, hair brush, extra clothes etc etc

Toiletries

• Travel sized shampoo, conditioner and shower gel. (hospital lockers/drawers are usually quite small).  Empty travel bottles (so you can decant your own regular products) are available from most drugstores, some supermarkets and online but Matalan and Primark also sell them.
• Face / hand wipes
• Deodorant
• Tissues
• Toothbrush in a case and toothpaste. (yep, I have a “spare” one – just a cheapo one. At home we have an electric toothbrush with interchangeable heads... obviously this set up doesn’t work if we’re separated so having a separate cheap one is very useful in an emergency situation)!
• Hand towel and flannel

Clothes

• Comfy pyjamas. Much, much better than hospital issued nightwear!
• Cheap slippers (mine cost £2/£3 from Primark).
• 2 pairs thin socks (better to layer them up than one thick pair – I get really bad cold feet and thin socks keep my feet warmer for longer). 
• Underwear (not on pic)

Miscellaneous

• Small purse with a few pounds in change in (useful for the pre payed tv systems and to buy a newspaper or magazine) –  If possible DO NOT take a full purse with bank cards etc – everything you have in hospital is your responsibility and unfortunately not EVERYONE in a hospital can be trusted! Lots of people have had money/bags/other personal belongings taken from them so it’s only worth having a small purse that you can hide somewhere with a small amount of money in.
• Puzzle book/colouring book/ Pens, crayons
• Empty carrier bag to put dirty clothes in.

I am raising money for The Ann Conroy Trust. Please visit my justgiving page and make a donation if you would like to win Juno the elephant or a miniature version named Junior. Both hand made by me!

Thank you for all of the lovely messages that I have had. I hope that this post is helpful.

Lots of love and hugs.

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!)

Chiari blog: What is wrong with me?

Hello again!

This is part two of my chiari blog series. If you'd like to see part one, please click here.

So, in order for you to fully understand why I am so eager to ‘plug’ the UK awareness month for Chiari Malformation and Syringomyelia I think it is only fair for me to give you some background into what makes me, me. Here's how I found out that I have Chiari Malformation and how it has been explained to me.

**Disclaimer: I will not disclose the names of hospitals / professionals involved in my care. Please be aware that everyone is different and this blog is not written with the intention to scare or upset anyone. – This is an honest account and reflection of my personal medical experience. **

You might well have read the “about me” and the “reason that I write” pages at the top of this page but until now I have been very sketchy about the conditions that I live with... I hate them. Like, REALLY hate them and it’s never easy to spill all! Stick with me on it though because it’s all going to be here today. Well... the main bulk of getting diagnosed anyway. Here goes.

April 2012(background)
I was enjoying my job as a teacher. My absolute DREAM job, working in the early years. It was challenging but the rewards were great. I actually found the teaching bit the easy bit! I found the staff room politics the worst bit (and paperwork the annoying necessity) but I had a really supportive Teaching Assistant and I had the attitude that as long as the children were learning, thriving, laughing and playing it did not really matter about the politics or how many times I would have new (in the tatty hand me down kind of way) furniture dumped into my classroom to be another hazard for my precious little dots. It’s a good job the site manager was a lovely kind of chap, all I needed to do was give him the look and he’d accidentally put it in the wrong room (HA – dream team!). Anyway, it was during work one day that I started to get a really bad headache. I'm used to them because I've had migraines since I was 8/9 years old but this was worse. I knew it straight away but I ignored every warning that my body was screaming at me! I didn't have the usual flashing/dancing stars that warn me of a migraine - it was strange, like I had been spun around on a watzer then stopped suddenly. It didn't last for too long at first. Maybe a couple of minutes at the most and it eased. I chose not to say anything because  I was sat down and the children were all in their free flow play, like I said, it eased so I thought it was nothing to worry too much about. It happened again but this was a bit later and quite a lot worse. I HAD to say something. I mean, what kind of teacher would I be if I didn't think of the children’s safety? I ended up going home to sleep it off thinking it must have been a Migraine. At that time I still lived with my parents (Just). Dan and I were engaged and had been given the moving date for our first home together. That happened to be the weekend after this “episode”. When I woke up I felt worse. Now, if any of you have ever had a migraine I bet you usually feel better after pain medication, a really good sleep in a dark room and probably after a whole load of vomit (sorry for the detail – I said I would be honest)! Well, all of that had happened and I felt worse!

Cue trip number one to the doctor!  Diagnosis: stress! – I bought that although I didn’t feel stressed. Newish job, first teaching job, house move... exciting but yeah, stressful too I guess. Prescription: two weeks of rest – no work (BUMMER-I was in the middle of goldilocks week and the whole topic was bears... I’d planned EVERYTHING including a teddy bears picnic)!

After a few days of still feeling rough (and having done a house move without lifting a finger other than to provide drinks and take photos ) I was visiting mum and dad. I was in so much pain with pins and needles that mum told me I HAD to go back to the GP. I hadn't registered or realised that every single time I was with my parents for the previous couple of weeks I had mentioned that I had pins and needles. I genuinely thought I had pins and needles until that moment when the sensation at the top of my arms had gone all weird and as if someone was touching my arm through a thick wet suit or something... most bizarre.

Cue trip number two to the doctor (I won’t keep this counting up by the way – I lose count after this one). This time at the doctors I ended up seeing a GP who I had never seen before. I cannot begin to tell you how lucky (reading that back and knowing what is coming seems too strange) I am to have ended up seeing this “returning to practice” GP. Alarmingly thorough with her investigations, having looked closely into my eyes and taken my BP both the old fashioned way AND with the computerised machine she got out her glossy thick book and explained that she hasn't worked as a doctor for a while so just wanted to check something out. *cue stage one panic* She was, on the other hand, absolutely calm and wonderful. She made a call through to the senior GP who came through to her room within a minute or two with a separate BP machine. *cue stage two panic*. They had a medical chat where the senior GP was kind of testing what the returning GP thought, he checked everything she had done and together they agreed, in one word, HOSPITAL *cue full on panic*! I had gone on my own. I was now this independent wife to be with a house and Dan was on his way home from work. The returning GP asked me if I was ok to drive to hospital they were expecting me and handed me this letter to give in at A&E reception. I said yes but the truth is I wasn't ok at all... I rang Dan and agreed to meet him first so I had him with me. He wasn't far away anyway.

In short the A&E experience resulted in a long, uncomfortable wait; a doctor doing all of the checks that the GP had done and saying “We have seen something so we will be referring you to a neurologist but you wont die over night”. Yes that is exactly what he said! Well, that’s a relief! I ain’t gunna die but I don’t know what is wrong!

By the way, I’m sorry if I’m waffling. I am trying to be

 accurate for you and also break it up into chunks.... stay with me.

Things got BAD I ended up being so bad that my sister thought I had had a stroke. I woke up completely unable to speak and my movement was far from “normal”. As soon as I sat up in bed it was as if something was squeezing down the back of my neck really hard and pressing my shoulders (just typing it out is bringing back scary memories). An ambulance crew came to the house to this “migraine patient” and took me down to A&E. I had a CT scan and some other tests and quite a lot of drugs pumped into me too... my parents were on holiday at this point and we hadn't started our strict regime of note taking so it’s quite cloudy for me. I know that Mum and Dad got back just in time for me to squeeze the hell out of mums hand as I had a lumbar puncture done (this was to rule out meningitis and they discovered that I had got Intracranial Hypertension - this is basically excess pressure in the skull). I can’t remember the exact facts and figures though. I hadn't seen the neurologist at this point. I hadn't even got my appointment through!

Neurologist day! - the start of religious note taking! (Highly advised for anyone going to hospitals)
He went through the CT scan and the results from the lumbar puncture. He ordered some MRIs too and prescribed Acetazolomide and Ammitryptaline to help with migraine type headaches and the hypertension. He also said I should remain off work until things were settled with the medication.

HOSPITALISED AGAIN!
I hadn’t taken two days worth before I was back in hospital. Once again an ambulance trip for an episode similar to the previous one. The paramedic crew stated that I was having a “typical migraine” despite Dan and my parent’s telling them that I was under the neurologist. Lumbar puncture number two happened. It was after visiting time so a nurse from New Zealand was given the job of holding my hand. The registrar that did the LP this time was not a very good shot... I still have the scars from where he missed – 5 times! He was very apologetic though and got his boss to come and do it in the end. The nurse had little nail marks in his hand when it was all over where I had gripped – woops but he still came and said good morning the next day with a NZ magazine AND some stunning photos of the landscapes near his old home (he could tell I needed cheering up whilst I was flat on my back and not allowed to sit up after the bodged LP). Whilst I was on the Emergency Admissions Unit (EAU) I was sent for a CT scan and an MRI scan. My neurologist came to see me and explained that I will be staying in for a bit longer while they carry out more tests because he felt that there was something that needed to be figured out but it might take time and thorough, methodical testing. I was then moved onto the general admissions ward. Well, I was actually moved onto an overflow ward where I met the nicest and kindest lady I have ever met. Nurse B. I was in that hospital room on my own for 3 weeks having test after test, MRI after MRI and Nurse B was there every single moment with me! Well, when she was on shift! She used to come into my room on her break and read my wedding magazines that mum used to bring in. We had pretty much planned my wedding between us (in our own way) and spent thousands haha. She gave me the idea of internet shopping for the big day! It gave me something to do! Occasionally we’d have a lunch date and I’d give her a bottle of Lucozade and a chocolate from my stash that I’d been given and we’d pretend we were somewhere swanky! It works wonders for a pick me up! The ward that I was on wasn't a happy ward to be on. There were quite a few deaths in the 3 weeks that I was there. In that respect, I am glad that I was the furthest room away from anywhere but on the other hand, the families used to gather outside my room (at the end of the corridor there was the family room and the door was by my room). It was so, so sad and I remember asking for headphones because I just couldn't  cope after a while so I’d have music playing all night so I could sleep.

Day of the news
So after 3 weeks of all of these tests and some really uncomfortable bedside “meetings” with general admissions drs doing the rounds (I will not go into the nitty gritty of those). My lovely neurologist came and explained that one of the radiographers had picked something up on an MRI called an Arnold Chiari Malformation and he’d sent the images off to the neurology team at the big hospital in the city. As a result, they had called an emergency meeting and I will be transferred to the big hospital either later that day or the next. It might seem strange but at that moment my main worry was not hearing this long, complicated word (it was written down and we were told not to google it en route... does anyone actually do that?) my worry was missing saying goodbye to nurse B. She had been an angel whilst I was in that room and she was on a different ward! I didn't even think about what the neurologist had actually just said to us! – I don’t even remember the explanation of it... It all kind of happened so fast. Three weeks of waiting and wondering were over in pretty much two sentences.

Well, nurse B found out somehow that I was leaving and she came running up to my room with the biggest hug for me. We have stayed in touch to this day and she even managed to come to my wedding! The ambulance arrived to transfer me to the big hospital in the city and it was only the same flippin’ crew that took me into hospital in the first place three weeks beforehand! When they saw me they remembered me. They also apologised without us saying a word! It’s so easy to judge a book by its cover isn’t it?! They were a really lovely couple of paramedics actually. They were a husband and wife team and they were so intrigued by the notes that the hospital had given them for the journey. They had never heard of Chiari Malformation before and the 'husband' of the two wrote it down to do some research (I really hope he did do some research). The 'wife' sang to the radio! It took my anxiety away!

There we have it. The story of how I found out what was “wrong with me”.  I’m sorry that there are a lot of words and not a lot of images. The story continues but I'll write another post about the big hospital in the city.

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).
Find me on
Facebook here
Twitter here
Instagram here
Love and hugs

Chiari and Syringomyelia awareness Month (and an elephant?)!

Hello and Welcome to the first National (UK) Chiari and Syringomyelia awareness Month!

This month I am dedicating my blog to my medical “story”. Well, not strictly medical but everything that surrounds the medical issues that I have. This does not mean everything will be doom and gloom! I will pretty much open up and go through the highs as well as the lows. If any of you has got or know someone with a chronic illness, you will know the roller-coasters that you inevitably end up on along the “journey” (urgh – awful word but I think it will be over used this month. Sorry peeps).

I hope to continue with the LYBS posts. I had a break last month because things got a bit heavy with an important hospital trip and various stuff but I’m hoping that I will be a lot more organised this month! *fingers crossed*- I already have some posts typed up and ready to schedule in (get me)!

Due to the nature of the ‘issue’ this month there will be the following disclaimer on all of my blog posts that I feel are a little nitty-gritty so to speak (and any others that I may write in the future involving “news” on my medical issues).
**Disclaimer: I will not disclose the names of hospitals / professionals involved in my care. Please be aware that everyone is different and this blog is not written with the intention to scare, upset or influence the choices that anyone is potentially making at the moment. – This is an honest account and reflection of my personal medical experience. **

As I have previously mentioned, this month is the first EVER Chiari and Syringomyelia awareness month in the UK and to mark the occasion I have decided to make (yep, you read that right) MAKE a cuddly toy Elephant! (It was the most popular choice when I asked on the trust forum and my family and friends).

Here’s how it will work.
If you would like the chance to win a special hand-made (by me) cuddly Elephant please click here 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 let me know on my (new) facebook page The Little Golden Daffodil and leave me a message so that I know that it’s you who has left the donation or tweet me @hangoldendaff with #junoelephant).

All of the money raised will be going to the Ann Conroy Trust. Let’s raise as much money as we can for such an amazing charity!

Please do not judge, be kind, love and support each other. Remember, not every illness is visible to someone on the ‘outside’ and more often than not, people suffer in silence.

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Love and hugs.