Saturday, 30 June 2018

I Miss You.

The first anniversary of your death is fast approaching & I find myself unable to stop thinking about you. I am feeling all sorts of different emotions.
To some people, probably a lot, you were 'just a cat' but I don't care, to me, you were & always will be, my best friend & my baby boy.



You came & crawled into bed with me on the days I was stuck in bed poorly, feeling down or not particularly like myself, & you were always there for a snuggle! You would pop your head around my bedroom door, meow at me & jump onto the bed, you'd give me a small & gentle head bonk as if to say "hey mum its okay, i'm here now!" & then you would lay yourself out next to me on the bed, so that you were stretched out enough that you were comfortable, but also still close enough to me so that I was able to lay y hand out & rest it on your body, stroking your fur, whilst listening to your gentle purr as you closed your eyes & slept next to me.


I treasure those memories the most. because it was in those moments that I felt better, I knew that you were always there for me, & it made me feel happy.

Everything is so different now you're gone, I have this void in my heart, this empty hole that aches every single day. Almost 11 months have gone by since you left me, & on days like today, I still cry thinking about you & how much I miss you. I try so so hard not to think about what happened & how did it happen? because I just drive myself insane! the truth is, I wasn't there in your final moments, I wasn't there when you needed me, & I will never know what happened to you, & what's more, I will never forgive myself for not knowing something had happened to you.

Sometimes I lie in my bed on a night & I try to work out what might of happened, did someone hit you on purpose, or where you being silly in the road like you have so many times before? only this time your luck ran out, because you were hit by a car & left to die in the road. I have to believe that your death was fast & painless, or I end up going down the road of "where you in pain & did you feel anything?!" all I know is, that whoever hit you, just kept on driving! nobody even moved you out of the road. that is until my friends found you hours later. I couldn't even have a final goodbye cuddle with you, which still tears me apart, because your body had already started to stiffen, so all I could bring myself to do, was sit down next to you & stroke your furr, like I had so many times before, but the moment I did, it hit me that you were gone! Your body was like an ice cube, you weren't soft & warm anymore like our previous treasured cuddles, you were ridged, cold & hard! Your body was just a shell, my beautiful baby boy wasn't in that broken body, you had gone & I was left behind to cope without you. 



You helped e get through so much in the 5 years that I was blessed with you. This some people might not understand, but the day I brought you home, you became my second child & you grew up with Joel, who was a baby himself when you came to live with us. I really don't know how I have managed it, but somehow I have gotten through these last 11 months.

The first few weeks passed in a blur. I couldn't sleep, couldn't eat & I just felt so lost without you. I didn't know what to do with myself, so to make myself feel a little better & get through the grief best I could after Neil had taken your body to the vets for cremation, I began building your memory corner, where your casket of ashes & photos now proudly sit so that you're always close to me.

I bought a tin to put all your trinkets in. your sympathy cards I had received from my friends that found you, the cards I received from the vets after your passing, & the little card that came in your box with your ashes from the people who had cremated you, but most of all, I have a little pot with your fur in. Some people think that's sad, & have laughed at me when I have told them, but to me it really helped to have these things. 

I bought frames to put some of our favorite photos of you in, then I bought a little cat wind-chime & other little treasures, such as a personalized candle & little ornaments with your name & a loving verse engraved on them. I basically did what any human does to get through grief & I don't care what others think of me, I love your little corner & I hope you are proud of it? I put you in that corner on the kitchen window because that was your favorite spot to sit & sunbathe, so now you are always sunbathing, which seems so perfect for you.


I still miss you so much Jack Sparrow, & I just want you to know that I will never ever forget you. I know that you're waiting for me & I can't wait to have a snuggle with you again, but until then, be happy wherever you are, fun free & have lots of fun!

I love you with every beat of my heart, & I will see you again! sleep well my gorgeous boy.



Tuesday, 26 June 2018

A day in the life of a "Spoonie Mum"


I am not sure what this post is about or if there is any actual point to it, I guess it is just me, having a ramble when I am feeling as frustrated & confused as I am.

If you have followed my blog as far back as 2015, then you will know that I have overcome a lot in the last 3 years when my 1 single vp-shunt failed & I had to go through 3 major brain surgeries & have a second vp-shunt put in alongside the original to 'fix me"

This post isnt about that though, I go on about my 'brain surgeries' enough apparently. This is about the events & problems that have unfolded in my life after all of that happened. see, people think that because I had my brain surgeries & a few years have passed, that I am all okay now & nothing is wrong with me, when in reality, they couldn't be more wrong.

So let's start at the beginning, 6 months after my surgery, when one morning I woke up & I couldn't move my left side at all. my face had fallen on one side & I couldn't speak, I felt like I was trapped in my own body & my bones felt like they were on fire. I started to panic! Neil, my husband, came into the bedroom & asked me what was wrong but all I couldn't do was grunt, whilst tears streamed down my face. Neil saw something wasn't right & called an ambulance, to which I was then blue-lighted to Pinderfields Hospital where I spent the next few hours having tests done!

The scariest thing was, this pain, this numbness that I woke up with, after a 45 minute 'episode' by the time I had gotten to hospital, it had completely disappeared. I was able to move my left side & talk again, but I was left exhausted, fatigued & rather confused. the hospital thought I was possibly suffering from a panic attack & sent home on some medication called Amitriptyline which I later found out is actually an antidepressant.
Then 3 days later, it happened again, & once more I was blued-lighted to hospital, but this time to Leeds General Infirmary, the paramedic witnessed my 'attack' & was convinced I was having a stroke, so when I got to the hospital I was greeted by the stroke team, but again, after 45 minutes, everything went back to normal. The paramedic that had stayed with me, looked at me like I was such a fake & left the room. Later that day I spoke to a member of the stroke team & he mentioned something called 'Hemiplegic Migraine' he then said he was going to refer me to a Neurologist to which I didn't think to much into at the time & once again I was sent home, but this time on medication called Propranolol which is a beta blocker drugged used for anxiety, but also it slows down the nervous system, so for me, it worked well with my pain & still to this day does work somewhat.

Fast forward to today, June 2018, a dozen ct scans & tests later, I am still stuck having these attacks with no clue as to what they are or what has caused them. I have been given numerous diagnoses which have then changed with every doctor or consultant that I have seen. I went from having FND (Functional Neurological Disorder) in May 2016, to having Hemiplegic Migraine in January 2017, to it then not being Hemiplegic Migraine & them going back to the original diagnosis of FND (Functional Neurological Disorder in Feb 2017.

I am currently awaiting an EEG on 2nd July, which my latest neurologist has sent me for, I say latest neurologist, because I have seen 3 different ones since May 2016. it's like they do one test, & don't find anything, so they decide to pass you on, & that is basically how it has been since 2016!

Never mind the fact that I live in pain everyday of my life, I fear leaving the house because my left side has started going numb on me when I walk too far, to the point I fall over & hurt myself, & can be then stuck on the floor for up to 30 minutes until the feeling in my leg comes back. some days the pain is so bad that I can't even get out of bed. My memory completely sucks, I can't remember anything past a few days, unless it was years & years ago, which is really strange!

I remember stuff from years ago, pretty well in some cases, but then if you ask me what I had for lunch yesterday I draw a complete blank, so as you can imagine I am very nervous for this upcoming EEG, as I am already feeling like my neurologist doesn't give a toss. 

At my last appointment, he was saying that 'my pain is very real' & then in the next breath, when I showed him a video of one of my attacks, he was looking at me like I am mental.
i'm so confused & frustrated. I know my attacks are probably "trauma related" after I had my 3 lots of brain surgery, but I have also lived like this for almost 3 years, which has slowly chipped away at my confidence as a person, I don't socialize much anymore & my lifestyle has completely changed. I barely leave the house unless someone is going with me, in fear of an attack. I got told that I might need to do some "CBT" - Cognitive Behavioral Therapy" so I tried to get some help in that area, I got talking to someone about possibly starting a course & then for some reason they just completely stopped replying to my emails,  & so nothing came of it, & now my attitude is bit like 'what's the fucking point?' but at the same time, I am also like 'I cant cope anymore' so I have emailed them again, I am just waiting on a reply, so fingers crossed, they get back to me!

its all very confusing & I am not quite sure how to deal with all these feelings I got bottled up inside, I keep struggling with anger issues, I hold everything in & then it builds up & I explode on to the wrong people! so as you can imagine, I have lost a lot of friends because of this & because nobody seems to understand, or want to give me the time of day, everyone just gives up on me. I am not a horrible person, I have just had a lot that has happened & changed my life! I have gone from being a mum who was always out & about with her son, taking him to soft play, taking him to the park, doing exciting things with him, to then becoming the mum who had a second child, became extremely poorly afterwards, & then never really got better again! I have already been through the stage where my son has asked me "why I spend so much time in bed" which absolutely broke my heart, but now he's older & he understands, & on the days I am in bed, he comes & joins me, so does my daughter to be fair! they lie in bed with me on their tablets, whilst I rest up! they say it's because they don't want me to be lonely on my own! the only thing that I know I can be sure of these days, is that my husband & children will always be there, i'm not sure about anyone else & I have gotten to a point where I am not sure I care whether I have friends anymore either.. 

How sad is that? 

Thursday, 21 June 2018

FELICITY VISITS BIG SCHOOL!!!

Four years ago, I was preparing for the arrival of my second child & first daughter. Fast forward to today & she is getting ready to leave me & start reception - where have the years gone? 



Today, Felicity had a visit to big school to get ready for starting in reception in September. 
she was so excited, she has been talking about it all week, & as you can imagine she was very excited to drop her big brother off at school this morning, so she could go herself. 

We got there a little early before any of the other children, so we just sat in reception. Or should I say, I sat in reception whilst Felicity kept her eyes firmly peeled on the door waiting for someone to come & tell her it was time to go in! soon enough, all the other children who are also starting in September began to arrive & Felicity got a little nervous then, she came & sat on my knee & was just observing all the other children, then finally, at 9.30am, Mrs Thomas, one of the reception teachers came to let everyone in! Felicity & the rest of the children were then lead to the reception classroom where they would be playing for the next two hours - which turned out to be the exact classroom Joel was in when he attended reception, so I had a small advantage when it came to getting all the toys out, because I knew where the best ones were.

Felicity spent a lot of the morning playing in the play-dough area, that was for sure her favorite activity, but she also had a wander around to try other things too, before then going back to the play-dough table! because what kid doesn't love play-dough right?! 



Mrs Thomas already knows Felicity as she was Joel's teacher when he was in reception, so she has actually known Felicity since she was a baby & I was bringing her on the school runs to collect Joel. She herself can't quite believe that Felicity is also now going to be coming to school, & with any luck, Mrs Thomas will be her teacher too! We will find this out in the next couple of weeks, just before Joel breaks up for the holidays! 

Here are a few other pictures of the fun Felicity got up to on our 2 hour visit. 







Felicity will have a few more visits to school before she starts in September, she has two more visits in June, one of which she will get to stay for Lunch, & then two more in July, when she will be in her allocated class for September! 

I still can't quite believe that my little Ladybug is going to be starting school. part of me isn't quite ready to let her go, but at the same time, I can see she is so ready for this adventure, today proved that. 

So I guess this mummy will just have to get over herself ;) 




Wednesday, 20 June 2018

A dedication to Princess Evie - Spreading Aneurysm & Hydrocephalus Awareness!

With permission from Evie's mum Jody Curtis, I have been allowed to dedicate this post to Princess Evie & help spread awareness for Brain Aneurysms.

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WHAT IS AN ANEURYSM?
An aneurysm is a localized, abnormal, weak spot on a blood vessel wall that causes an outward bulging, likened to a bubble or balloon. Aneurysms are a result of a weakened blood vessel wall, and may be a result of a hereditary condition or an acquired

1 in 15 people develop a brain aneurysm rupture. 44% of ruptures are fatal & 66% are survivors. Little Evie is a survivor. 





Little Evie was a normal, happy & healthy 9 year old little lady, that loved to dance, skip & sing! but on the 8th May 2018, Evie was rushed to Nottingham Children's Hospital by air ambulance after complaining of neck pain & then collapsing at home. Jody, Evie's mum, was told that Evie had suffered a ruptured brain aneurysm, all this time Evie had lived with this time bomb & she had zero symptoms until the the aneurysm burst. This lead to Evie suffering with a huge bleed on her brain, she was taken to theater immediately, & thankfully, doctors were able to coil the aneurysm & stop the bleeding. Evie was then placed into an induced coma to protect her brain.  




Altogether Evie suffered two brain bleeds, & during the second surgery the doctors tried to remove her aneurysm but it was too risky, so instead they removed some skull bones in that area to reduced the swelling that was causing the second bleed. Before surgery only one of Evie's pupils were reacting to light, but afterwards, due to the removal of part of her skull, both of her pupils were finally once again reacting to light. 






One 14th May, Evie was taken for a CT scan to check & see if the removal of her skull bones helped to reduced the swelling, this was a positive result regarding the swelling but Jody was also told that when Evie had the second bleed, she also suffered a stroke, but Evie was still fighting strong & doctors decided to bring her off life support, leaving her with just her oxygen to see how she got on, this was positive & Evie began to make small movement on her right side, & even break wind. Over the coming days, Evie began to make small movements & she finally opened her eyes for the first time on 16th May 2018, 7 days after her ordeal but still wasn't full conscious.

On 17th May, little Evie was extubated & the tube was taken out of her throat to see if she was able to manage her airway all on her own.  Evie remained asleep but continued to make movements in her sleep which nurses all said were good signs. Evie developed an infection on 18th May & was placed on antibiotics, but she still continued her fight, making small noises & hand movements & opening her eyes at times.


On 19th May, Evie went back to theater as a scan revealed she had excess Fluid on her brain due to the damage, doctors put a temporary drain in to help, but none of this stopped Evie, she carried on her amazing fight & on 20th May she was awake watching DVD's in bed with mummy by her side, whilst doctors tried to find out what her infection was. 



On 21st May, doctors said that Evie was doing so well that she could be move off Intensive Care & onto a Neuro Rehab Ward as she continued to recover. 


On 24th May, Evie's NPA was taken away & she was breathing completely on her own, Evie has also been suffering a lot of panic attacks & anxiety after her ordeal which the doctors were also helping her deal with. 



On 29th May, Evie had a shunt fitted to help drain the excess fluid from her brain, which I helped give her mummy some advice & support, with me also having 2 shunts myself. the operation was a success & after the operation once back on the ward with her mum, Evie moved her left foot for the first time! 






On 31st May, Evie had physio, & she was in a seat position with full support but she had lot of fun kicking balloons & splashing her hands in water when asked & on 4th June, a wheelchair was sorted for Evie to help her get used to sitting up & she took her first walk with Mummy & she also enjoys visits from family & friends. 










Evie is possibly the most amazing & strong-willed little girl that I have ever seen & I am so blessed that her mummy has allowed to me to follow her journey & write about it to help spread awareness... Evie still has a very long way to go, but she is strong & a belting little fighter. on Sunday 16th June, she got to leave the hospital for the day to spend Fathers Day with her daddy & her family, & it was such a lovely update to see the whole family together having a normal day! 
















Evie is currently awaiting on an MRI scan after suffering with a lot of neck pain, so we are all waiting to find out the outcome of this, but I think I speak for everyone when I say how PROUD we all are of Evie for coming as far as she has & being a true warrior. 

If you would like to continue to follow Evie's journey, then please give her mummy Jodie a message here.. 

Thank you for taking the time to read this post & thank you to Jody for allowing me to write it. 


We all love you Princess Evie! Xxxxx