A small moment to remember your so much more

Mum guilt we all feel it, it seems to come along brutally as part of motherhood, a phrase that before I had my little boy I would roll my eyes at but it's very much real and next to impossible to get rid of.

Becoming a mum  life becomes a huge jigsaw puzzle trying to slot the pieces back together, trying to place everything back exactly were it was but with a child in tow and when you have a chronic condition that throws obstacles and difficulties  from every angle and makes that puzzle even harder. Since I had my little boy Kian a huge piece that I had wanted to place for so long was going back to work.


Now I realise how selfish that sounds, I would rather work than be with him, but here's the thing, kian's the most important thing in my life but that didn't mean  he had to be the only important thing.


I had so many opportunities to say screw it, my hearts knackered, life's so unfair,every opportunity to give up, my health set me back constantly all that ever came out of trying to work again was that white piece of paper ticked unfit for work and in the passed going back to work didn't last long because my health would just go straight downhill and it became harder each time to go back, the anxiety of another setback became unbearable , but the tears that flowed every time I left the doctors were painful because the truth is work was a huge part of my life before I got sick and an even bigger part of my life before I became a mum, I was also stuck with, how could I set a good example to Kian if I let my problems win, the only example it sets instead is how easy it is to give up, things that are important aren't worth fighting for, and working is such an important factor to me.

Going back to work when Kian was 18 months old felt like the last piece, after months of setbacks , I finally felt like my life was complete again, I'm far from supernanny but I had work and looking after a toddler going smoothly and my health being the best its ever been since my heart problems started my jigsaw puzzle was complete.....Except being selfish wasn't anywhere to be seen in that complete jigsaw puzzle.



The thing is returning back to work only made me even more less selfish,  Your forced to work have the house tidy, dinner on the table putting everyone and everything before yourself, you ask how everyone else's day has been but nobody ever bothers to ask how your crap day has went.
Even when your unwell as a mum, what does mum do when she's sick, or should I say what doesn't she do ? of course she doesn't put herself first, being a mum its like your automatically programed not to be selfish all the time.



The sad thing is, I realised I had lost my inner self, I was too busy focusing on getting my health back. so I could work, to busy trying to balance motherhood and work To busy trying to do the mum role perfectly that I  got so lost with trying to be a good mum that I wasn't a good wife or friend I wasn't a good me.

When my husband said to me one Friday night  as I reached for the tea cup instead of the wine glass that I was so boring, I actually felt this huge weight of sadness wash over me, I felt sad and guilty that I had lost the fun bubbly me, the person who was the first and  last to leave a party now turned down every invite to instead sit with knitting needles and a cuppa, but the thing was deep down I knew she was still there, underneath the yogurt stained T-Shirt, the weeks unwashed hair pinned back, the handbag full of dummies and toy cars she was, the same girl who still dances stupidly around the living room to Steps still done that at most opportunities.



All mums do feel guilt but having an illness that guilt is amplified ten times more and being a working mum that guilt is amplified hundred times more so when you have an illness and go to work that guilt eats you alive.

You feel guilty for being a shouty mum, guilty for being unwell, , guilty for hiding your head in the fridge to eat, guilty for wishing you could go back to work and have a hot cuppa and some adult chat, but the thing is now I feel guilty that I'm not a stay at home mum, you always find something no matter how big or small it is to feel guilty about.

'I need a break', were the words I held back for so long, I feared being judged. Working mums get a break, we get the best of both worlds right? , but that couldn't be more further from the truth.



As a working mum, it's no fun leaving them for most of the day, its no fun coming home and seeing them peacefully asleep knowing you missed a whole day of their precious little life's, others hearing words and seeing precious milestones and moments. It's also no fun the tears you shed  when you walk out the door, you spent most of your day clock watching, as the saying goes a watched kettle never boils, that's how your day is, But here's the thing going to work isn't a personal break, your not going to work for some time out, and when you finish you don't actually clock off, you've just finished one thing that's expected of you, and coming home you've used ever single ounce of energy that's left  that you become that shouty tiered mum who's no fun and then you feel guilty for making work be an important part in your life.

When I say those words 'I need a break' it didn't mean I wanted to put my feet up, or go out for a drink, It didn't mean I wanted to kick back with Netflix and the Game of Thrones box set,  it didn't mean I wanted to step back from my responsibility's , it means I wanted to take a moment to feel human again, In days and weeks that are all mould  into one, putting everything before yourself you just want a moment to be selfish, when your burning the candle at all ends, trying to do everything ,you just become exhausted from trying to do everything right except you feel like your doing none of the jobs perfectly.



When I do 'get a break' I don't use it for fun, I don't use it to even hit the gym or go shopping, I don't need a break to unwind, have a party being me on my own instead I find myself lying in a quiet room or I go for a bath but the thing is I sit with my own thoughts were I switch off for a few seconds, without something being expected or wanted from me.



I do the one thing that I need to do, to work and keep up with the never ending needs of  my beautiful Kian, two important things in my life, being a stay at home mum would be easier, I wouldn't risk setbacks, I wouldn't worry constantly if my hearts going to play up, I wouldn't live in fear of having sick days and I wouldn't have so much guilt for leaving him to go to work but that would be giving up a huge part of me that makes me who I am, I worked before being a mum and I worked long before I got sick and I'm more than just a mum,  my breaks allow me to recharge those battery's that are on energy saving mode a lot because of my heart.

I put absolutely all the fuel  I have stored in the tank  into being a good mum and working from the minute I opened my eyes in the morning till I close them at night there isn't a single second I'm alone with my own thoughts, Where I'm not been needed and were demands are expected of me, not at work, in the shower, or even in the toilet.

When I say 'I need a break' it's because sometimes you just need a moment to be yourself, to remember who you are, a moment to stop and catch a breath to make a choice for yourself, we need a moment to feel like we still exist as a person, who doesn't just go by the name mum. Because you can't love others when you don't love yourself and to love yourself you sometimes just need a moment to remember who you are.


                                                               

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You can let it break you or make you

                                           

Whilst I have been taking into consideration ways to try and stay positive and change my way of thinking we are all human and we all have those days were we feel down and sad for no apparent reason, we digest those moments in our own way. Sometimes it's easy others times it's difficult am finding it difficult at the moment, The drastic feeling of grieving my old life, and the hardest one my lack of ability to separate my heart problems from being me as a person.

Its only occasionally I break down, as I write this post it's just been one of those weeks, we all have them, we all go through tricky times, Ronan keating once sang a song about life being a roller coaster and as much as I dislike the song he has a point.

After speaking with my cardiologist, he's now spoke with some plastic surgeons and I have been referred to them, along with an appointment for some pain management and new tablets to try, A routine check up with the nurse turned into having to be seen by the doctor who phoned a few minutes later saying 'am sorry but you have to go to the hospital to get an ECG and chest X-ray', were the doctor at the hospital said the good old favourite my hearts fast go back to my GP who knows my history, and my dermatology appointment resulted in being put on tablets that will make me so sensitive to light even standing at a window will cause me to burn with the added side effect of sickness and all this had happened by Tuesday afternoon. The fatigue from work is just the worst, a phase return only working a couple of hours with days off, but they days off aren't really days off because the days I finish early or are off are spent at hospital appointments so I'm never getting 2 minutes to just recover from the hours I have worked,  the smallest of tasks are proving more difficult. I spent the whole of Sunday in bed with a racing heart, I know the moment will pass  no matter how bad it feels, it may feel like you will never get through these attacks but eventually I know it stops, you find the strength inside and try your best to ignore it,  but that attack left me even more physically and mentally exhausted, and it made it harder knowing I had a busy week ahead and  that I wouldn't be able to lie down to it all.

I constantly find myself reflecting back and grieving how my life used to be, I hate that my heart has robbed the life I had, everything I ever dreamed of doing feels impossible and just the whole ability to be able to function like a normal human being is hard. It's difficult to accept this because I'm only 25 , I constantly find myself looking at others my age and feeling nothing but jealousy , the long 12 hour shifts I used to do each day at work I'm doing 4 hours and a week of that I'm stuck in bed with that little hamster coming  out and running round that stupid wheel attached to the cage which is what my heart felt like it was doing, the career I always wanted since as long as I can remember, growing up every Saturday I would sit In front of the TV with Casualty on saying one day I will be a nurse, just seems physically  impossible, and it's heart breaking knowing how hard I worked, being so close to doing that nursing course yet never being well enough or able to do it.

 I was stuck with the same questions  will I ever be able ?  Am I happy about the situation ? am I terrified that this will always be my life ? am I worried i'm never going to achieve my goals in life ? Do I realise others are worse off than me ? how can I change my way of thinking ? How can I separate my problems from the life I want to live ?  ... i'm stuck I don't know because sometimes it just feels overwhelming 

Although I actually didn't shed a tear, I locked myself in my room and processed all my thoughts, avoiding everyone even my phone , I hate to be babied or pitted, over how I feel,  I get angry at myself when I bundle everything up as I know that makes everything worse so I found myself feeling even more angry for hiding it all,because a problem shared is a problem halved but sometimes it's easier to keep it all to yourself because you know it hurts the people close to you because they cant physically do anything to help,  when I was at the hospital getting an ECG and a chest x-ray the nurse asked if anyone knew I was here, or with me ? I said yes, even though that was flat lie, but for once I didn't want people worrying or changing plans. I seemed to have lost what I'm normally good at analysing and breaking down the situation even if it is a rubbish one, I just shut myself away from everything, shoving in my iPod and blocking out the world, and my feelings.

One afternoon Dougie said to me you can either let your heart problems break you or make you   were shortly after the words followed "right now it's breaking you I think at this point I did cry, because as much as it gets me I don't think I'm letting it break me, but am I ? But then I figured I'm trying, trying so hard to manage work no matter how exhausted I am, no matter how much work effected my heart that day I stayed and finished my shift, how tired I was mentally from being at the hospital the night before, I still got out of bed early and made it to work the next day, trying so hard to juggle work, hospital appointments,being a mum just trying to live a some what normal life, all at the same time as trying so hard to function like a normal human.

There are many questions I find unanswered, so many worries,the more I think of all the bad points the harder it feels to cope which makes everything feel so overwhelming, sometimes it's easier to not over think life and just take each day at a time, sometimes I just feel sad that my life is like this, but then I remind myself there is a flip side to this, I'm young enough to still achieve something even if that something isn't what I had planned or dreamed it to be, I'm young enough to find balance even if I need to start over , it's difficult when months and years pass you by in illness, I'm still young enough to build blocks very slowly to find my way.


I'm trying my best to remain optimistic not necessary forcing myself to be positive over the whole rubbish situation but optimistic that I can still achieve something with my life, find happiness and ways to cope and move on and not how Dougie had put it let it "break me " find a steady balance that I feel I can work with and it's something no doctor or fortune teller can tell you what the future holds, if building blocks slowly will work out or if I need to build my blocks and form a different path to find that balance.

Although I'm not on the path were I wanted to be at the moment am closer than I was yesterday or even last year and I hope eventually I will find that path were I have a steady balance with life, work and my health that I will be grateful and thankful for. They say things happen for a reason and although at this point I have never found that reason I hope one day I will look back and understand why things turned out the way they did.

 'it feels like everyone else is moving on with their lives while i'm stuck here in this hole that I can't climb out of'

Life isn't always fair or clear sailing for any of us, I think we all sometimes wish we could run away from our problems especially when everything builds up, a place were problems don't exist, but that isn't possible, we all need to find that balance in life and is finding that balance letting go of how life used to be like because as much as you want it to be like before, its never going to be that way or  starting over with new blocks and building that new path that does form balance, they say thing's fall apart so better things fall together is this what's happening ? do  I just need to let it fall apart and let it come together how it should ? I know I need to find that balance because its the only choice I have to be happy in a negative situation that is having a damage heart that's never going to get better.

                                                         

                                                             

                                                 

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When nobody gets it

Last  week had been a really good week for me, when I say good I actually mean bloody brilliant, I was managing simple things that a few weeks ago I struggled to do,  tidying the house, hanging out the washing taking a walk along the beach with Kian to watch the aeroplanes landing, typical Scottish weather it didn't go to plan , my perfect picture for Instagram of sun sea and my little mini Dougie, was a huge fail it started off sunny and then snowing all at the same time , hiding in the cafe with a well deserved cuppa and a piece of Nutella cake, I finally felt  like I was getting my sparkle back no more negative grumpy Debbie downer Danielle.  I finally felt like I had found my positive pants and I was wearing them proud , going to the pacemaker clinic and finally feeling like everything was starting to turn from negative to positive no more bad news, yep my heart appeared to have got even more lazy and my heart function had decreased and I was relying on this little battery, ticking over more, but I felt blessed, I felt the best I had felt in a long time,I finally felt that one step closer to making it back to work, one step closer to achieving things I felt were impossible a few months back closer to just being like the old me ,and having that glimpse of feeling well and healthy was just amazing, I clearly had forgetting what being well felt like because it had been so long.

Getting up on Monday morning I woke up up with the worst cold, now the colds just the cold right ? Everyone gets it take all the cold remedies sweat it out in a bath, lie in bed drinking fluids etc but when your  heart is sensitive to nearly every single cold remedy out there it's just not as simple. Do u see were am going with this? If u have a shitty heart like me that's sensitive to nearly anything that makes your heart work faster including getting a bug, a virus an infection even just 'that cold' then you will know exactly what am about to say because you will know exactly what it's like, it's not "just the cold " when your heart doesn't work properly your heart and health take a huge hit.

I tried to ignore it I really did, I tried to not complain and moan about having the cold because let's get real it is just the cold and as much as I felt like I was dying I wasn't and it was "just the cold", carrying on my day as normal and with a hyper toddler who also had the full blown cold and was just as grumpy as me because he obviously felt just as shit as I did.

Oh god getting on with 'just the cold'  was hard, but thankfully kian you were amazing and had a 3 hour nap on Monday , I really thank you for this,giving mum some well deserved time to lie and sulk on the sofa with a hot water bottle and paracetamol  before we took a walk to the shops to get things for dinner.

Now if you've heard of the spoon theory by Christine Miserandino, Using spoons and having none left  not going to bore everyone to death with the whole spoonie theory but basically ,  I had been trying to be superwoman all week  getting on with it all, not lying down to it refusing to admit how bad I felt simply telling everyone I had 'a cold'  but by Thursday I was wiped out and feeling even worse than I had been, I had clearly exhausted and used all my spoons up and didn't have a spare spoon left,  Maybe I should of used my spoons more wisely and not pushed and got on with it like normal people do because I guess as much as I would love to just get a cold and get over it like everyone else does it's not as simple when you have a rubbish immune system and your heart doesn't function how it should, and that cold that I had not been  complaining about, well Saturday morning resulted in a trip to the out of hours because 'that cold' was pleurisy and my heart had started to struggle, the little horse had come out to play and galloped away making me sufferer even more than I had been.

But the frustrating part of it all I spent the whole week trying to explain to family and friends yes it's "just the cold," but the cold makes my already rubbish heart ten times worse, were none of them seemed to get it," just get on with it, it's just the cold,"or a favourite "stop being a drama queen  " now maybe I should of said to people how bad things actually were, but I don't because I rarely admit how bad things are poor Dougie did try to understand and he seen how hard it all was for me, as each day passed I didn't get better and couldn't just get on with it  like everyone else does as he came home on Thursday, he knew I now needed my bed, as much as he laughs and calls me a drama queen he sees how much it effects my heart he knows me better than I know myself and what had been "just a cold" I was now  feeling unwell with my heart. but I guess it is hard to fully understand  when you haven't been there and don't no what that  is like, being completely wiped out and unable to leave bed because your heart is working overtime so much it leaves you feeling even more unwell than you already did.

Again it created that  whole barrier of you look fine the whole invisible illness striking because you can't physically see the pain or how unwell I felt or how my damaged heart is taking a huge hit.

It made me realise I can try to ignore it not be so negative think of it like everyone else it's "just the cold," and the cruel words rephrase that ignorant words 'just get on with it' , I had been doing exactly that the chest pain and breathless I had struggled with the whole week I had ignored  it all thinking it's just my bad heart having a bad week, I had cancelled plans let friends down I did just carry on at my own slow pace, I didn't say to anyone moan or complain because the sad truth is like Dougie as much as everyone cares and  wants to help there's nothing anyone can do or say to stop my heart going haywire when I catch colds bugs and this time pleurisy  Whilst they do care telling them doesn't make them get it or understand.

Sometimes its better to keep silent than to tell others what you feel because it hurts badly when you come to know that they can hear but can not understand

You can't fully understand until you've been there yourself,
So the next time I say 'I just have a cold' don't question me don't tell me to get on with it I'm already doing exactly that ,just that I'm  not sharing and moaning about how bad things actually are because you wouldn't get it or understand what that is like and I know that must be hard.

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To the nurse who restored my faith when I didn't have the strength.

                               

 You didn't really know me, you came through the ward door onto a night shift and all you knew was the basics that the nurse before had handed over, as you shouted up the large ward that had been full and busy with people all in for different reasons they had all been and gone there was just me and another 2 old ladies left.  At first you frightened me, with your high pitch loud voice shouting 'I don't know if your in pain you have to tell me' I buried my head into the pillow as you grabbed the blood pressure machine to check my blood pressure, I didn't speak to you I simply smiled, you seemed rude, scary, one of they horrible nurses that everyone hopes isn't looking after them, the sort of person I would avoid like the plaque and I wrongly judged a book by its cover.

You see I have spent a lot of time in hospital, meeting endless doctors, nurses receptionists the list goes on, but they treat you and look after you as a number on there list of patients,  I mean you can't ask for more can you ? their all doing there job rushed off there feet with small breaks in between, stressed exhausted, longing and counting down the hours for their shift to finish to get home to their own life.

Maybe it was your voice that made me judge you or your attitude I don't know, or the way you walked around, I was sore yet to scared to say anything to you as you muttered away to yourself making up the beds for the next day. I was to scared to be an inconvenience.

As I lay there, you knew I had just had my pacemaker removed and a new one implanted but what you didn't know was really how broken hearted I was, that I was missing my little boy who I had left behind on so many occasions with no choice, as he would wave goodbye to me it killed me inside that I was his mum and I wouldn't see him for a few days I felt like a failure, like I was letting him down, forever left wondering would I miss the first word he ever said, did he miss me at night ? Did he wonder why Mummy was always sad and not around much , that I cried myself to sleep every night I had been in hospital which had become my second home,  grieving and longing for the life I used to have, or the tears I shed after every soul destroying moment that I was told my heart couldn't be fixed but they would try again, but that try again was always just a try and that try kept turning into a fail, the jealously I felt just wanting to be like any other 25 year old, I would be reminded as my facebook feed filled up with pictures of my friends and work colleagues out enjoying themselves I felt forgetting about that invitation out with them turned to a quick text after a while that text turned to nothing, loneliness filled my  broken heart that I would forever be the one who is always too sick to do anything, my birthday was just 2 days before and instead of celebrating I was consumed with sadness knowing I would be spending it in hospital and spent the next day packing my hospital bag, you didn't know that I had been through what felt like hell and back again, that my heart was now damaged beyond repair, that I was the girl who if you held my hand or touched my shoulder you would feel how heavy the weight was, the anger sadness and frustrating eating away at ever last piece of me that didn't  already feel broken.

But what you didn't know was that how a random act of kindness made me feel that little bit better, you restored my faith during what was a really horrible time for me . As you seen me lying there you noticed my pillow and sheets was soaked and covered in the cleaning solution, mixed with dark spots of stained blood, my own blood were just a few hours before I had lay before being put to sleep praying and hoping I would wake up to the same pacemaker and that it wouldn't come to it being took out and I wouldn't be met with a new horrible scar and a new pacemaker all that hope had been shattered just a few hours before, I mean I owe my life to this little piece of machinery propelling my heart to beat so you could question was it such a big deal ? but it was it meant another couple of weeks of being pushed further back from were I had wanted to be .My long brown hair was stuck together and painted red, you helped me up to the chair striped the blood soaked bed as you muttered away some more and said 'everyone who's unwell needs a clean fresh bed', you were just doing your job but not only did you give me a fresh clean bed you guided me to the toilet  that was close yet felt so far away walking and standing was a challenge,  I was sore and tiered and didn't care how I looked but you sat me down and washed my hair despite how busy you were you didn't give me the option to lie down and sulk about it all, telling me how can you feel your best if you don't look it.You guided me back  found my pyjamas helped me out of the horrible hospital gown and tucked me into my clean fresh bed turning the lamp above my head on, and wished me good night.

I hadn't  had a good sleep for weeks before hand, everyday had been another long day spent worrying, undergoing tests hoping it wouldn't come to my pacemaker being removed so soon, and that just maybe this one more course of antibiotics would kill the infection that had struck and was  slowly taking over my tiered body and this whole nightmare would be over, or that before my pacemaker I would wake up during the night gasping for air struggling to breath because of  my heart pausing or beating too slow,or the times my husband would shake me violently to wake me up as I was  yet again having another nightmare were all the difficult times would flood back to me. I would be frightened even though I struggled and it was a fight to keep my tiered eyes open I would lie awake scared  in case my heart did pause and never unpause again forever wondering if I would make it through the next day the next hour without that faint happening just scared of the unknowing but that night I slept like a baby, all my fears were washed away like the blood and dye you had washed from my hair.

Maybe you seen through the fake smile as I had smiled as you took my blood pressure, maybe you had even been there yourself, but you took that few seconds to notice despite how busy you were. You did make me look that little bit better which made me feel a million times better . And that simple act of kindness of washing my hair tucking me in and wishing me good night made that horrible day and few weeks that little bit brighter and for that I am forever grateful and from the bottom of my broken heart thank you for restoring my faith and washing my hair when I didn't have the strength to wash it myself.

                                             

Yours sincerely

The girl with the broken heart




                                                             

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What living with an invisible/chronic illness is really like

Movies like my sisters keeper, the fault in the stars  all have a begging a middle and an end maybe not a happy ending but an end were you close the book or turn off the movie and if your like me in floods of tears but you feel satisfied that there's an ending , but my health hasn't had a happy ending . And that's what having a chronic illness is like there's not a happy ending the ablations on my heart have never worked .. And the average person doesn't know what having a chronic illness is like, what it's really like to be sick, to be in a constant battle with what you physically want to do but your physically unable to no matter how hard you try you can't feel better because you can't escape your own body so I thought I would share that with you because being sick isn't glamorous like the movies make out , I mean what's glamorous about being in hospital gowns covered in constant bruises because of all the needles or how even combing your hair is a mission so half the time you don't comb it unless it's to try and feel better or of course take a selfie.

Having the flu for example or the cold you feel awful but after a few days you start to feel better but having a chronic invisible illness isn't like that they few days turn to weeks which turn to months and for me even years, it doesn't go away yes you have good days which are very few and far between and you treasure they good days and appreciate them but the symptoms you feel never go away.

The fatigue and tiredness you experience everyday you can't just go to bed and sleep at night and wake up feel refreshed, I can't even remember what feeling refreshed feels like.Its a daily struggle but you just have to get on with it, your body and mind simply go into auto pilot and you just have to find a way to cope with it you can't just sleep it off.

 I can take tablets everyday just to stop me fainting, feeling dizzy and to stop my heart from racing but even taking tablets it doesn't go away or cure it, it manages the symptoms, but even taking the tablets they don't stop the fatigue and tiredness in fact the tablets make the tiredness worse because you have no choice because feeling exhausted is far better than fainting and being physically unable to get up in the morning, and there's more awful side effects with the tablets like the vision problems you experience where bright flashing lights flicker in your eyes or when they slow your heart down to much the chest pain breathlessness but again you just get used to it because you have to.

All the appointments and check ups you have to go to, the hospital and doctors becomes your second home, were every doctor at the surgery knows you, when you phone up or go to the reception desk they greet you and know your name without you even opening your mouth, and you know your there so much when they start to ask about your husband etc, even going to accident and emergency they recognise you because your there so much, part of you feels embarrassed when you can spot and point out your huge folder of notes that is bursting at the rim because of all your admissions.

Being scared of needles or been frightened of tests just doesn't exist because your so used to it its like having a cup of tea you just drink it and having a chronic illness your just used to it, the pain of the needle you barely notice it now because its like you  become immune to the pain you know you don't have a choice and its just got to be done, you feel no emotion to any of it but having a chronic illness its not as simple like others,just putting in the needle and taking some blood, because your veins just don't exist anymore yeah you have them but they are thin and frail from all the times they have took blood and if they even attempt they just collapse, so it becomes a task and you get used to millions of doctors trying and failing and it takes ten times longer and in the end give up or if its a must and you do need fluids or drugs,they have to find an ultra sound machine so they can scan you all over just to hunt and find a decent vein.

Things people say to you can be upsetting and frustrating and can even make you angry because they just don't get it its like they try to be helpful but there words can be hurtful and I wanted to share some of things people have said to me and if your reading this and don't suffer a chronic condition you might just think about what your saying and how it can affect people.


When someone says give me a phone or let's meet up when you feel better 

Chronic means chronic it's persistent its long term, it's not like a cold or the flu it doesn't just go away it's long lasting. So please just don't say it yes I will try to meet but when I do meet I am still sick I am either having a good day or I am feeling complete pants but am just trying to get on with it .

Your to young to be sick 

  I didn't ask to be sick nor did I want to be sick, what age is it acceptable to become sick ? If I reach                                                              60 does that make it ok ?

You don't look sick 

What does sick look like ? You don't say to someone going through a divorce ohh you like like a divorce because it doesn't look like what's happening to you .. If my chest thudded and vibrated and I looked tachycardia  or looked like high blood pressure would you stop saying it ?

just get on with it

Most days I am doing exactly that I am just getting on with it despite the way I feel getting on with symptoms if I didn't I wouldn't even get up in the morning I wouldn't eat shower or be a mum there's a difference between getting on with it slapping a smile on doing normal things than when your generally having a very bad day that your physically unable to do those things but you don't want to be sick so when you are in bed or  cancelling things its not because you don't want to do those things its because you can't ... and it does hurt to cancel plans or nice things and you spend your day lying in bed feeling awful but also feeling miserable because you did want to do those things.

It must be nice getting lots of time off from work 

Yeah its nice to have a holiday but its a totally different story when your physically unable to work even though you want to and is a totally different story , I mean who wants to stop getting paid because there off so much believe me its not nice been off work and spending days been stuck in bed or hospital just trying to distract yourself from the way your feeling, having to explain why your constantly off sick and why your not getting better, I would trade my illness with anyone who wants that lifestyle of feeling awful and been stuck in bed all day.

what if you exercised more ?

yeah if you exercise and are fit and healthy that helps lower your heart, but having ist nothing lowers your heart, yes doctors tell you to exercise and do what you can but having a normal resting heart rate over 100bpm sometimes your just not able to, and even when you exercise which for me is something simple like walking you have to watch your heart doesn't speed up to much or that just makes you even more sick and could result in fainting which just knocks you further away from good health and were you want to be.

 Its in your head/anxiety 

If I had a pound for everytime I heard this before I got diagnosed with ist my purse would be heavy and I would be a rich, its like when you physically look healthy its just assumed its mental yes anxiety and stress can make ist worse but who doesn't get frightened or scared of passing out alone but you do have a physical illness and ist before it became a known condition patients going to the doctors with fast heart rates and fainting were told 'its in your head' but research showed people with sinus node modifications didn't have fast heart rates anymore so before you say this to someone with a condition just stop and think its not helping and if anything causes you to feel more fed up, stressed and miserable.

I know someone with the same condition and they manage

Everyone reacts different to an illness, like how everyone reacts different with a cold, just because someone manages more than others I managed my whole life having a fast heart rate but it didn't bother me and led a normal life until 3 years ago this really doesn't help or make you feel better so just please don't say it its like people try to encourage you but it doesn't you can't help it, some people with ist can't even shower without fainting were as others can run etc and manage.

So as the saying goes stick and stones may break my bones names will never harm me... words do hurt its amazing how simple little things can make all the difference so I thought I would share these with you to a simple act of kindness does really go a long way.


Can I come over ?

sometimes leaving the house is to much so someone saying can they come over makes all the difference its nice to get company but doesn't use up your energy or spoons it shows they want to spend time with you but understand you cant go out.

Sending a message

Its always nice to know that someone is thinking about you, if you have been off work for a while and generally haven't had any company I mean out of sight out of mind?   it just makes your day when you know people are there for you and thinking about you.

I understand

Saying this to someone stops them from feeling guilty or a burden if they have cancelled plans, I mean I always feel awful about cancelling and I always leave it last minute as I always hope I feel better letting them know your not mad just helps the guilt and makes them feel better and makes you more likely to make plans again because you wont be afraid of losing them as a friend

Hug

Sometimes you don't even have to do anything just a hug goes a long way and it really helps knowing someone is supporting you and listening when I was getting induced with my little boy and it kept failing meeting up with my community midwife and her just hugging me as I walked into the room lifted a huge weight from my shoulders and it did really made all the difference, even an extra cup of tea from the midwife's at the hospital just made me feel that whole lot more positive about things.

I believe you

This is the most wonderful and powerful thing you can say to someone with a chronic condition seeing is believing when you look healthy its like people doubt you having someone believe you is the best feeling in the world and gains trust and shows a true friendship and is the best thing you can say to someone with a chronic condition.


 I hope everything I explained in this blog post helps people understand what having a chronic condition is like my next ablation is on Tuesday and as I have explained before this might not cure me but will ease my symptoms and help me with everyday life at the moment I just feel in a constant battle with things I want to do but physically am unable to do and above all I just want to be a mummy to Kian and live life to the full even with a chronic illness these simple things make all the difference, we are just back from sunny palma nova were I enjoyed the sun sea and spending time with my boys it was so nice to get away and be a family and to actually feel good.

Kian has now reached 29 weeks and is nearly 7 months and at this age things are getting easier its so rewarding now he communicates in his own little way by always smiling at my voice turning round to look for me when I speak and on Tuesday its going to leave a huge empty space in my heart been at the hospital without him, he's the whole reason I want to recover quick as I am frightened of missing things, I would hate for someone else to hear his first words or see him sit up I just want that person to be me.


29 weeks today sits up on his own but still falls over if he reaches for things is now sleeping in his own room rolling about more but prefers to stand or bum shuffle if u shout his name he turns to look at you a lazy eater and will just swallow things in one go 🙈 now naps more during the day and doesn't fight his sleep also likes to lie on his side to go to sleep always so happy and smiling

                                                              Love and hugs

                                                 

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Getting a little shine back to my life

When you become ill its so easy to become a different person, for me I lost my sparkle, my happy bright attitude, and slowly as the days turned into many years that bright happy sparkly person I used to be wasn't there anymore, no matter how hard I tried to be that person I couldn't, its so easy to loose sight of the person you used to be I was consumed by anger, jealous and self pity and felt I was pulling everyone down around me.


To get my sparkle back I can't get rid of what's taking it away as I have no escape from my body and despite doing all the rehab with my knee and taking all my medication for my heart and also going through the two heart ablations it never seems to get better, the drugs minimise my symptoms on good days but it doesn't make it better, watching everyone else doing simple things makes me angry and jealous as sometimes for me walking to the end of the street is difficult and exhausting and you spend the rest of the day recovering, but over the past few weeks I feel I am getting some sparkle back in my life.

To start with growing up I had always dyed my hair blonde but after my first collapse and being diagnosed I suddenly stopped, as something so simple like going to the hairdressers became a task and something I had no interest in but the other week I decided to get blonde highlights back in my hair and already felt I was gaining some of my confidence back. I also started taking Kian to baby massage something I would never have done going to a class with people I didn't no as the fear of something happening and being with people who have no clue about my heart, but the anger and sadness got the better of me as I didn't want Kian to miss out just because I'm frightened of the big word if, and managing to sit down on the floor beside Kian was such an achievement as getting up from the floor is so difficult for me but doing it each week its slowly getting easier and the anxiety of getting stuck with my knee and fainting because I have stood up too quick is slowly disappearing.


My lovely blonde Hair and tanned skin these pictures were a few months before my first faint.

Admitting I needed someone to talk to and needing a little help also got some of my sparkle back spending a few days in tears just feeling like its all to much being sick  with a baby I spoke with my health visitor who refereed me to a place for mums who are finding things a little difficult where you are able to go and meet other mums and talk about how you are feeling. Being a mum is the best job in the whole world but it is difficult and having my heart problem makes it even harder feeling unwell I used to just lie down but having Kian its not as simple as that and no matter how sick I feel I can't just lie down to it now, or how carrying Kian with my knee is really difficult and leaving the house takes me ten times longer doing stairs one at a time while carrying Kian, and having to stop every few minutes I do feel my heart racing as the thought of passing out with Kian worry's me so much.

My beautiful baby baby who is now 15 weeks, he is my whole reason for not giving up his smile just makes each day worth living, no day can be that bad when you wake up to this face. I hate having to wake Kian to go to all my early appointments and after a 12 hour sleep he still yawns, he hates it all as much as me.

I also went to my first physio appointment since having Kian and even though my surgery was 4 years ago my knee is still no better, and hearing the words I am still miles away from were I should be was soul destroying after 4 years of constant rehab to hear that, but looking at what I have achieved it is slowly  getting better a few years ago I was unable to walk without crutches and a full leg brace now I might not be able to walk properly and still have my limp but I can walk and leaning on Kians buggy makes it even easier.


I turned 24 on Saturday and I spent my birthday with Dougie and enjoyed a meal and a few drinks with friends  and felt I got some of my shine back, its so easy to become a shadow of the person you used to be, I fell and got lost, I guess it was so hard to see the positives when your in such a dark place.

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One year After my second failed Heart Ablation

On 22nd of January 2014 only 16 weeks after my first unsuccessful ablation I went in for my second one but after a long 4 hours I got the news again doctors couldn't fix my heart. I will remember this day like yesterday I could tell  by my cardiologists face it hadn't went to plan. Spending the day on the ward seeing everyone else going round to the labs and coming back fixed just made it worse. All I could think of was why mine couldn't mine be fixed like there's. I spent the whole day in floods of tears just feeling so many different emotions and the worst one blaming myself thinking if there was anything I had done to cause all my heart problems.





A year on I have achieved so much even though I still live each day bothered by my heart problems, the biggest one being, having my little boy Kian. I spent most of 2014 in hospital during my pregnancy but I learned so much during this time and the biggest one is how many medical professionals know nothing about ist, the constant battle I faced each day trying to explain it all and how frustrating it was. I am grateful as without my heart problems I wouldn't be the person I am today or the attitude I have gained. Growing up I was always shy, and worried about simple little things like being late or missing my bus or caring what people thought like on occasions when I have  had to take to lying on the floor in the street to stop myself from passing out I used to feel embarrassed .. now I just do it as its all a part of me and when you do get someone kind enough that asks if you need help or even speaks to you without crossing the road it makes you realize not everyone is a bad person and there is good people in the big bad world we live in.

I managed all 9 months of pregnancy without my normal heart medication and a full 8 weeks of breastfeeding Kian without tablets, with one faint before new year but going to my check up last week my doctor picked up my heart was racing and my blood pressure was extremely high so I have now been giving the drug Ivabradine to try but as the 5mg last year made me suffer from bradycardia I am on the small dose of 2.5mg. Taking these was such an effort the other day as they don't come in half sizes and spent Monday morning cutting them in half and them flying about all over the kitchen floor .. which was brilliant spending the morning picking them all up which was a great workout for the heart, I have still been treated for an infection aswell since having Kian which has made my heart problems worse and I am now on my 4th lot of antibiotics. I started my new tablets and already I hate the side effects the sore chest the blurry vision and feeling constantly out of breath, I am going back in 4 weeks so the doctor can check my heart and blood pressure again and hopefully things have improved as my gp said it can't stay like that with how high it is.

Today instead of thinking it was a year ago my heart couldn't be fixed and instead of feeling sad or angry I have learned to accept its all a part of me and its made me who I am today  and for that I am grateful.

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Strong mummies really do make strong babies

Hey Everyone

I should of updated sooner as I have so much to fill you in with and you think with being on Maternity leave I would have all the time in the world... but for me most days are spent at the hospital. I have reached 35 weeks today... and I am so happy and blessed me and baby Urquhart have made it this far with good health, It has definitely  been a rollercoaster but with each passing week I am closer to meeting my little miracle.

After my last post were I spoke about being admitted into hospital again thankfully things have been going a little more smoothly, I still attend the day assessment clinic at the hospital every Tuesday and Friday were I get bloods took my blood pressure, heart rate checked and also baby Urquhart gets a tracing done... who can be one little mr or madam who clearly doesn't like the pressing and the monitor, its only on one occasion he/she was sleepy and not moving and the midwife gave me cold water to wake him or her up to get a decent tracing. Last Friday I was on the monitor for 2 full hours as he/she wouldn't stop moving, the midwife kept saying baby's are active for about 20 mins at a time and then rest not our little baby who was moving so much the midwife finally had to give up after the 2 hours, but on this same day I got another scan to check the fluid around the baby who was seen practicing to breath this time and also he/she has a head of hair already.

Baby Urquhart at 33 weeks 4 days .. he/she was seen practicing breathing and also has a head of hair :)

My 34 week Bump baby Urquhart seems to grow every week and started getting pelvic pain this week, but my heart is still behaving.

This week along with my appointments I managed to spend a night in Glasgow with Dougie were we seen the show Still game, the first time we have had a little night out together in ages :)

                            Me and Dougie enjoyed our night in Glasgow seeing Still game :)


On Friday I had a day booked of appointments at the hospital  my first one was day assessment were they ran an hour behind so ended up having to go to my second appointment  first which was to see anesthetics  were we spoke about my heart history and she advised that in her opnion it was best to have the epidural to control my pain which would help control my heart, I then had my growth scan booked were baby Urquhart is weighing an amazing 5 pound 6 and again we were told Its definitely not a baldy baby, baby Urquhart was seen practicing to breath again and was also pouting its lips this time.

Baby Urquharts little foot :)

  Baby Urquhart at 34 weeks 4 days who definitely isn't a baldy baby and was pouting its lips

After the growth scan I had to go back to day assesment were luckly the doctor came to see me and again baby Urquhart is one monkey who was moving so much the machine was alarming the doctor ended up turning it off. The doctors are happy with the size of baby Urquhart and are hoping I can make it to 37 weeks and may look at inducing me then so I now have appoitments to be seen at the high risk clinic every Friday, me and Dougie are shocked and nervous but excited that we could be meeting our little baby in just 14 days time a whole 3 weeks early.

On Saturday I had the most amazing baby shower thanks to my husband, brother and his girlfriend who done it all for me, baby Urquhart was one spoilt baby who has so much already we are both so lucky to have amazing family and friends in our life who are all so excited to meet baby Urquhart and who all argue already who's getting to babysit first, me and Dougie definitely wouldn't be short of baby sitters.

 The cake my brother and his girlfriend got made :)

 Dougie made all the food.

 Some party games pin the dummy on the baby... mine was the worst.

 Baby Urquhart is one lucky baby.

 Family and friends are everything.

 Twinkle Twinkle little star how we wonder what you are ... after all our scans we still haven't found out boy or girl.... mum still says pink ... dad blue.

Lots of Love and Hugs