Have I gone entirely 'bonkers'

                                                 

 When you get sick doctors have the answer don't they? You feel unwell you go to the doctor they either know right away what's wrong or you have a test or few done then bingo you have an answer.

You leave with a brand new shiny diagnosis in your pocket and your doctor fixes it, maybe it's medication, surgery or a simple change of life style  but the doctor always has the answer.

So what happens if your doctor doesn't have an answer, neither does the next one or the next one after that, are you really unwell ? Or have you gone completely mad ?

Is it in our heads ? Are we being big pathetic babies,?  A little over dramatic,?  imagining it all,? wimps?

The way I always seen it , growing up you got sick, you seen a doctor,  you got antibiotics, whatever but you got better, but what happens when this doesn't happen ? What happens when doctor after doctor doesn't know or have an answer,  self doubt you blame yourself , you start to question everything including your own sanity if the person who should know, doesn't know, the big question you ask yourself is are you truly suffering or is it in your head ?

'There are two types of people in the world ones who blame themselves and ones who  blame others for there problems'

Over the years since my heart started acting up I met many cardiologists, doctors, even the pain management team as at one point the pain became to unbearable, I was admitted into hospital,they even sent in the specialist who deals with all the infected pacemakers across the whole of Scotland, not only once but twice when they couldn't find a reason for my racing heart.

Over the years I would lie in bed as my heart raced I would question everything my brain couldn't shut off , maybe it was anxiety, maybe I was just really unfit, maybe I should even loose weight, or was it all in my head ?,the pain from my pacemaker being removed was I being a big wimp, a drama queen maybe I should just get on with it, maybe it wasn't really that bad I just had to man up, maybe it did just need time to heal they do say   times a healer don't they ?

 I can tell you 4 years on from when my problems started, if I have a string of good days I still question everything,, my hearts been fine, maybe I am imaging it worse than it is, maybe I'm even clinging onto feeling unwell  because  I'm afraid of all the things  I done before that caused me to faint and made my heart race, the whole fear of it going wrong again. It's all the questions of self doubt mixed in to ... my sick /bonkers brain ?

Let's face it, we all have those days don't we ?, were we do feel good and question ourselves wither it was trying to find a diagnosis or being in pain , when that little naughty voice whispers "am I making it up ?" ' Am I just a wimp?'

But it wasn't anxiety, or in my head I wasn't making it all up or crazy I ended up with a pacemaker because my heart just point blank refused  to work normal and god I had even questioned myself over needing a pacemaker, maybe the breathless and chest pain from my heart beating to slow wasn't really that bad, maybe I am a drama queen I even searched for another reason to explain the faints because my heart had started to pause.

But the reality is we all question ourselves in some way or another and we all at times blame our mind, my Nana always taught me your mind is a powerful thing that barely anyone can understand what goes on inside your own mind, so maybe it's normal to feel bonkers but even if you don't know what's wrong that doesn't change the fact that something is wrong even when you come across doctors who don't believe you there not worth worrying over there's always another one out there, somewhere who will listen and take you seriously even if they don't know what's wrong.

'Just because you have good days don't let that horrible whisper in your head tell you that your crazy' 

When we doubt ourselves it's  because we think doctors know everything so when they can't find a reason for our problems you question yourself your brain for that matter, thinking  if a doctor doesn't know it mustn't be real, it mustn't be in that big medical book you find lying on their desks because if it was they would know and you would leave with that shiny new diagnosis.

But if there's anything i learned doctors don't know everything, when I dislocated my knee when I was 20 I ended up with chronic pain afterwards every step bend I made I was in agony MRI scans showed nothing and during one appointment I had a doctor even  tell me "maybe it was my hormones making the pain worse" I left sobbing and did question that reason, even though deep down I knew it wasn't but he was a orthopaedic surgeon In fact he was the best knee specialist in Scotland so if he could find nothing wrong then was there anything wrong there couldn't be right ?

But there was after years of pain, endless sleepless nights and tears shed they decided to look in my knee because I kept appearing back with the same problem no matter how much they didn't believe me I shut off that self doubt because it was real, I wasn't crazy and it definitely wasn't hormones they discovered the positioning of my knee cap was off and had wore away most of the cartilage in my knee which explained everything, so that was proof  right there tests don't always show what's wrong and doctors aren't always right.

We have to learn to trust our bodies and instincts when we know something is wrong, just because they don't know doesn't mean it's not real or happening,


I was always blessed and really lucky with my heart to have a good cardiologist who never doubted anything instead always looked for the answers and when he didn't know he would ask someone else who would know and eventually I could shout house in bingo because I had an answer, so I always found myself questioning why I feel the need to beat myself up about it all but in my crazy brain I don't know, I guess it's easier to blame your problems on yourself or others.

                                             

,

.

                                                            
                                                                       

                                                             

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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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More than your 9:20 Appointment

Over the weekend I didn't feel right, I barely left the house, I had been telling everyone something was wrong, I was still in a lot of pain from were my old pacemaker used to be, I phoned the pacemaker clinic I didn't know who to turn to being told to wait 2 weeks on an appointment with my own doctor just seemed to long, were  the gentleman on the phone told me there was nothing they could do since it wasn't actually my pacemaker but that they would inform my cardiologist... I don't think they ever did maybe it was easier to say that to get me off the phone ,so I made an appointment at my local surgery with the first doctor I could see which happened to be you.

I was going on my own, Dougie was at work I mean no big deal right ? But it is when you constantly have that fear of medical professionals being ignorant to your condition, your always told its fine yet it never is, the day I had  my collapsed 2 years ago one of the worst ones were my heart rate skyrocketed to 185bpm,  I had went to the doctors begging for help, begging for anyone, someone to listen  to me, that this wasn't all in my head I wasn't making it up it was real the way I was feeling yet I didn't know what was wrong, or what was going on with my body, I was a terrified 21 year old but yet again you told me its just an infection my body will get over it soon, but less than 24 hours later I was lying in a hospital bed diagnosed with a heart condition and had just been giving drugs to reset my heart back to normal, can you see why I get nervous going on my own.

Sitting in the room I told you about my pacemaker and how I didn't feel right, you had a quick look, all of 5 seconds if you were lucky ignored everything I was trying to tell you completely dismissed my concerns , maybe I should of led you on when you said 'I can feel your pacemaker', really ??? Because that's just impossible when its no longer in that side anymore, which was proof that everything I had just told you must of really went in one ear and out the other, but instead I corrected you showing you the pacemakers on my right hand side now.

It will go away eventually', you told me, telling me to rest take painkillers, even milk it a little as you laughed as I left the room, maybe this would of happened but deep down I felt you just wanted rid of me and it was easier for you to just send me on my way, you made me feel stupid like an idiot, like I had just wasted your time, I was in a great deal of pain and beyond fed up, I left the exact same way I walked in, I didn't want to milk anything I just wanted to feel better.

That afternoon I sat crying, just sick of feeling rubbish, just wanting to look after Kian and I had spent the whole weekend and passed few weeks feeling like I was letting him down again were he waved goodbye as he went out with his grandad and nana he didn't even seem like he needed me anymore and I now this isn't true the way I was feeling made everything 10 times worse, or knowing Dougie was slowly getting impatient with me always lying around in bed not having a dinner made or even spending time as a couple. I wonder how you would feel having kids what its like to feel like that to be unable to do anything with them mentally you want to but physically you just can't, or what its like to feel like your letting your husband down he doesn't deserve this everyday.

Well you were wrong, it didn't just go away I ended up in hospital having to get fluid drained from my old wound and more antibiotics, maybe you didn't believe me, maybe you thought I was faking it, being a drama queen, making up the pain was worse than it was I don't Know, but I'm more than just a number, I'm a person with feelings

Please next time just listen to me and not dismiss my concerns, treat me like a person not a number on your long list of patients, I'm just a normal girl, who doesn't want to milk anything I just want to be normal.

                                                         
                                                           

                                                                   
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Anything worth having was never easy

A full week has passed since my pacemaker was removed and I got my new one, your told to rest, not lift, not stretch basically do nothing ...well It feels like that anyway haha and the passed week has been spent lying around in bed stuffing my face with chocolate fizzy juice and all manner of junk food,  at the same time as moaning I need to loose weight, and leaving poor Dougie looking after kian, I felt terrible as I could hear the temper tantrum that was going on in the living room because Kian's not getting his own way, and it will always be something really stupid like not getting to climb on the fireplace or being made to sit in his high chair, as I lie in bed like lady muck with the TV enjoy some peace well it wasn't really peace having a 1 year old running around, I just wanted to get up and help , Dougie demanded me to stay in bed away from Kian as him seeing me and wanting up to play just ended up upsetting him more, I mean u can imagine the guilt when he puts his arms up crying for a cuddle and I just can't do it,  I did as I was told, but honestly I would of rather been looking after kian spending time with them both instead of being stuck in pain and just feeling like a total invalid , kids can  be hard work they know how to push buttons and boundaries and kian is pretty stubborn and a nightmare some days were he shakes his head if he doesn't want to do something, grabs his shoes and jacket and has a major meltdown when you tell him it's to early to go out yet... Which is normally 7 in the morning and you haven't even washed your face, had a cuppa or even got dressed and yep as I walked through to the bathroom he was lying face down in the hallway screaming his little face off all because he wanted to go out... poor dougie, but at the same time I thought welcome to the wonderful world of mum, something I deal with everyday... were you don't remember what a hot cuppa is like what it's like to pee in peace , or even just that 5 seconds rest, I mean its rewarding and I would never change it for the world but it's tough.

Dragged out of bed on Sunday, because' it's to nice to stay in' as Dougie put it the sun was out and here in Edinburgh you have to enjoy it because it's rarely dry never mind the sun being out I hate to say it but when we got there the sun was gone, but we spent a  lovely day in South Queensferry we had a little walk along by the sea and stopped into a little cafe called One Upon a Time. I have never seen such an amazing cafe, Charlie and the chocolate factory and Matilda wallpaper fairytale books, fairy's, sweets and cake it was heaven, and was worth getting out of bed for to enjoy a hot chocolate inside, I just love fairytales and this cafe was one huge fairytale.

Ok so going back.... am still living in heaven thinking about this little Once Upon A Time cafe as we were driving home I said to Dougie I would love to open a cafe like that, that would be my dream job were I could decorate and fill the shop with all my Disney ornaments and books, and   live in my own little fairy tale world,  but realistically unless I win the lottery it's never going to happen, that fairy tale little dream I have in my head , Was really a quick moment of dreaming, i was snapped out of dream mood when I had a occupational health meeting about going back to work just two days later. Dougie told me to cancel saying I was only a week out of getting a pacemaker there's just no way I should be going, but I felt more determined than ever, Every time I have been it's resulted in tears , full blowing tears, why is everything and everyone against me really it felt that way, I know there job is to look after your wellbeing and make sure your fit enough to return to work, but it's hard to accept when you feel able to and want to, it doesn't matter what my cardiologist had put in writing about my bad heart, I had always maintained that it's bad and I know I will always have problems but it's not going to stop me, it would be easier to give up, quit, claim benefits and sulk about how shit my heart is whatever but it's not the life I want to live, I just wanted to wake up and feel like I could win the battle I just wanted to open my eyes and feel like my days been successful and not another battle were I not only suffer but loose, and that's how I have felt with the passed appointments, some could say I was stupid for going I mean really how can you be well to go back to work a week after a pacemaker being removed and a new one implanted, the day before the hospital had phoned asking how I was feeling, because the swabs came back showing my infection was a lot worse than my bloods had showed, so if I felt unwell at all to go straight to the hospital, but anything worth having is never easy and I Knew deep down I had  to prove I could and was able to work,at least give it my best shot and if I can't manage working at least I tried God loves a trier and all that but really am a great believer In you have to try In life nothings easy but sometimes you just have to push yourself and try because it's amazing what you can do,I have always said my hearts a huge part of me and my life but that I would never let it stop me from achieving the things I want to do, and my ultimate  goal is returning back to work.

I got out of bed the morning of my appointment that feeling of butterfly's in your stomach I felt sick, like really sick with nerves, i'm such a  queen but like I said in my last post am not a stressed out sort of person but when I do get stressed it's not just unable to sleep or just feeling uptight, it's full blowing stay out Danielle's way kind of stressed because really I could cry, shout, break down, or even laugh, and my hands and neck had randomly broke out again for no reason so it must be stress right? The doctor has said In the passed,  stress makes your body do some weird things  and I do believe it's me being so stressed causing the lack of sleep, going to occupational health, I hadn't washed well I had washed at the sink yep I feel like a total minger but I just didn't have the energy and the pain was to bad aswell as having to watch the dressings, poor dougie was left helping me do my hair for the passed week I just felt shit, and Am sure I must of looked it because Dougie was at work and couldn't help me and I found myself wearing a hairband I hadn't wore in years, getting my dressings off on Monday  I looked like I had been in the middle of a battlefield, I have been living in pyjama's  and boob tubes if that's what there even called now when I did have to get dressed so I really felt stupid, I looked like I had barely anything on but I was comfy, so who cares if I looked like a complete twat, total cringe . I was late great start but rushing is just one thing I don't do especially a week after a pacemaker, I called her every name under the sun the last time as I sat crying my eyes out in the chair but actually I was shocked  when she asked about my hands I found myself saying its stress with coming here, she  questioned that I was saying she was the cause of it, and without thinking twice I said yes, I mean what the hell had I just done, dug an even bigger hole for myself , but I just wanted to be honest about it all, I really felt like I didn't care and I just had to get it off my chest,but instead she listen how I explained about constantly being told I can't work ,how it was one thing after another with my health and being even more honest I'm just completely stressed out and worked up about the whole situation because its never ending as much as I smile and put on a brave face inside am hurting grieving the life I had once had, trying to get used to having a pacemaker and still getting used to being a mum, Kians 16 months but everyday I feel like am still learning.  Every time I have this appointment my hands randomly break out, obviously I filled her in on my new pacemaker.were a week after a new pacemaker she put  in writing to be sent to my line manager that I could return to work once I have recovered  as much as I wish I was superwoman and bounced back quickly I'm not I'm human and I need to recover ,  before throwing myself  in at the deep end .. And it really is the deep end I haven't worked in 17 months, I am extremely nervous about it but excited at the same time eek !

Finally something positive as I left it was the best feeling phoning Dougie with good news instead of me phoning and sobbing my heart out, saying its never going to get better, I mean Im far from being recovered and feeling better it has only been a week, Im still a bruised sore mess but finally having something positive to focus on just makes the crap situation a little easier , I mean finally its took a long time but the light is at the end of the tunnel, emotionally and physically its been tough recovering having Kian, I just feel completely wiped out its like mentally and physically its been a huge weight I have carried around for so long and its finally been lifted. Last time I found myself rushing back to things and maybe it was to soon, but I always thought stupidly because am young I would bounce back from it all and recover quickly but I don't think it matters what age you are, everybody needs rest and time to recover, part of me is scared wondering if I will manage if I will make it through that shift without having to either lie in a dark room and cry because working in the theatres is tough and so stressful or fall down with my heart playing up but I wouldn't ever know if I don't try.

Today I treated myself and finally my hair got washed properly at the hairdressers its amazing how you feel so much better when you shove on some lipstick and your hairs done that I found myself venturing out with Kian and we spent the afternoon at softplay but lord that was very stressful kids are horrible with one pushing Kian knocking his chocolate bar out his hand and then kian screaming because I binned the chocolate bar  so he had a full blowing paddy in the middle of soft play and tomorrow will be my first day having Kian on my own for a full day, and the pacemaker will probely  be hit and kicked a million times I will be beyond exhausted and I will think omg why did I do this to myself so soon but  I'm  doing it all for Kian, I hope one day and am sure he will read this blog and I hope he will be proud and know that everything I done, making the decision to have that last ablation that failed miserably  making the decision to get a pacemaker that I done it all for him I just wanted to be a mum, not a sick mum that has all these struggles, Life is only 10 % what happens to us and 90% how we react and I could of just admitted defeat  with work with everything  but I would of hated to never have got that last ablation constantly left wondering if my heart could of been fixed or not making that step and returning to work left wondering if I could of completed that 13 hour shift and if I can't manage then its fine then I will admit defeat but defeat is not the worst failure, not to have tried is the true failure.


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Out with the old and in with the new,(My second Pacemaker)

For anyone who knows me, I like plans and when things don't go to plan or happens out the blue I get really stressed out, Am the sort of person who books a holiday and has to organise and plan everything so far in advance, like when me and Dougie booked a weekend in London I had to purchase a book about London and learn and plan every little detail from when's the best time to go to the London eye, as I just hate queues I am  the most impatient person you will ever meet, to checking out every tube station and the times, before I have even arrived , so when I received a phone call off my cardiologist on Monday afternoon at 16:40  saying he wanted to admit me tomorrow morning to take out my pacemaker after just been told on Friday it wouldn't be done till there was space and even though I had been placed on Tuesdays list under another cardiologist he ended up not been in the hospital that day so he had only just phoned and cancelled a few hours before saying it would have been impossible to squeeze me in and that they would need to look at cancelling someone next week, here I was a few hours later added again I was an emotional worked up mess, in a way the positive side was I didn't have time to think and worry about it all and also It meant I wasn't stuck feeling so rubbish for another week but I wasn't prepared mentally and physically and with it being cancelled you kind of accept it's not happening so you snap out of scared nervous mode but my plans were shot and then Sprung upon me, so I was a stressed out mess since I had only a few hours to organise  myself and of course Kian.

When I got the phone call on Monday I was shocked the phone call was short and sweet, as I phoned Dougie I don't think it had really sunk in that it was happening tomorrow I wanted to jump with joy but cry at the same time so the rest of Monday was spent packing my hospital bag and organising kian for me not being there I was overwhelmed with emotions and the worst part not knowing really what was happening.


Tuesday morning came  I got up the same routine I do before any heart procedure having a shower washing my hair which is always a must for me, you just never know when you will be able to wash again Which I hate I just hate feeling horrible, I had been told I would be done in the afternoon so it wasn't quite an early start like it had been every other time so I had enough time to enjoy a shower and  try my best to relax, well being a mum I will rephrase that run around sorting and worrying over Kian with the extra time I did have.


Arriving at the hospital the waiting game to be took I found myself coming across the same faces I had met before from the same receptionist to the same nurses who looked after me  even the same cleaner were they all asked how Kian was and how come I was back again yep this was my 5th time being here,  I  met with the same cardiology registrar who had helped do my pacemaker were I was giving the consent form to sign... asking did I know what was happening NO not a clue !!! I knew the pacemaker was coming out but had heard so many different opinions off my own cardiologist to the others I had met in the passed few weeks, either take it out and leave it a few days and then reimplant once the infection was gone or reimplant straight away in the other side. He told me I was a high risk for infection since I already had one this did increased my chances of another and the story he had been told was the last option take out and reimplant at the same time but this meant a longer procedure for me, so the consent form had lots of plus and minus all over it and  was nearly bursting out the page with all the maybes... scary stuff  but basically  we would see what happens once there inside and make a decision. I felt sick this was my body and my heart and I really didn't have a clue and felt completely vunerable and scared not knowing what I would wake up to, if I would wake up to no pacemaker and back to the horrible slow rhythm and pauses or wake to a new scar and new pacemaker its scary when you just don't know, And when they add in the risks like puncturing  a lung with the needle because its so close, to things that are life threatening, it is scary and as much as you think it just wont happen there is always that small chance it will, you think it wouldn't happen to you and I always think like that am sure most people do, but  my last ablation left my heart damaged a risk I knew could happen, but I was told was so slim but yet it had happened and a risk of infection  after a pacemaker which only happens in 2 in every 800 pacemakers but I happened to be one of they unlucky 2 were my cardiologist had said it was simply just bad luck so there's always that fear that something will go wrong.

I made Dougie leave I cope so much better on my own I get an emotional mess saying goodbye as they wheel me through, I hate goodbyes I know it wouldn't be forever but I hate saying goodbye to the cat in the morning when I leave to go to work so you can imagine what am like in hospital. Sitting on my own I was sat looking around the ward at a room full of older ladies now I know this is something I always go on about a lot but it really hits hard  that am so young to have all these problems and everyone my age is out working having a drink enjoying life and instead I have spent most of my 20s in hospital fighting for good health and a normal working heart. and it does hurt emotionally. My cardiologist  came to see me were  he said the 2 options again and there was risks with both but what would I prefer ?  in my head I was thinking none, a wand were it would all  magically disappear, but obviously wands and magic are made up stories, as much as I wish they were real or I had a lovely fairy godmother who would come and save me from it all, he said how he felt the second one removing and re implanting at the same time would be best, as being a mum it would mean I would get home quicker and it killed two birds with one stone I wouldn't need to stay in hospital and go through another operation and also he feared by removing it and leaving it out it was putting me at risk of the pauses and slow rhythms which brought the huge risk of  me fainting again. But this one did increased the chances of infection to that side , all these hard  decisions and I had to decide there and then. time was ticking he was on the case before mine. I went with the first it was hard but knowing I just wanted to get home to Kian and be one step closer to being were I want to be I thought lets just get it all over with ( a little crazy I know ) Putting on my gown and of course the lovely paper pants, the needle was placed in my arm with all the nurses avoiding me like the plaque my veins are just terrible and the same routine of running my hands  under warm water searching for a vein It went in with the first go thankfully, surely this was the start of good things to come.

Wheeled through I didn't feel nervous I just wanted it all over with giving antibiotics we spoke about Kian and my next Holiday were he said I had to bring him one day to my appointment he would love to meet him I laughed honestly the word stressful and nightmare come to mind haha lying on the same table I had found myself lying on so many times before I was giving sedation I have to say this time was like my 2nd ablation horrible and painful I think because they were working on both sides at once yep I had my cardiologist  doing the pacemaker and the registrar taking it out the other side so even though I was a little spaced out I could feel pulling and tugging at every angle not to mention the drape lying over my face I can't really remember if it was right over my face but it was there so when I did kind of come to I just felt it there and I hate things close to my face but I would doze back off  I was struggling a lot with my breathing and they did have to help me out with oxygen were the nurse kept saying It would all be over soon and I would be sedated back to happy land maybe not quite, I could still feel the tugging and pain especially the  right side were they were putting in the pacemaker I did feel a little sorry for my cardiologist who did keep apologising to me but I did prefer last time when I don't really remember anything.

When I came round on the ward a few hours later the first thing I noticed was my hair yep they had the lovely dye used to clean your skin and blood all over my hair which  had actually dried in and was stuck together urg ! My cardiologist came and said even though my pacemaker wasn't full of puss there was a few bits that didn't look right and shouldn't of been  like that so he had cut away tissue to send off to the labs he apologised again for it being painful and said he didn't no why it was painful as he had used so much local to numb it but it just didn't seem to work the left side did, just not the right weird and I would love to know if anyone else has experienced this and its not me just being weird ?

I had fasted all day I was so hungry it was 6 o'clock by the time I got back to the ward I could of really ate a horse and I was greeted with a big fat chicken burger and chips just what was needed after my ordeal,  but it was freezing cold and I couldn't even cut it up as using a knife was agony. I really felt like an invalid and was really anyoyed that my dinner was freezing. Dougie came to see me with good old chocolate and lucazade and when he left the nurse on nightshirt came on she was short and fat and was one of they ones that you think omg she's going to be mean, especially when she shouted through the ward' if your in pain I don't know you have to tell me to give you painkillers' really loudly but as the saying goes never judge a book by its cover and she was one of the nicest kindest nurses I have met, noticing I was lying in my bed which was covered in blood and dye along with my pillow she demanded me to get up and sit on the chair so she could strip it and change it where she tucked me in and told me everyone who's unwell needs a clean fresh bed to feel that little bit better and why the hell had they left me lying in that, she then noticed my hair and helped me wash it at the sink since I was unable to move my upper half,  and then helped me to get my pyjamas on, it was one of the best sleeps I have ever had in hospital she turned the lights out put the lamp on above my bed and I really slept like a baby. All I needed was a hot chocolate, a hot water bottle and a good chick flick and I would of felt right at home haha, but  really good nurses are worth there weight in gold and one of the main reasons i do want to return to work, anyone can look and care for someone but having learned through my own expierence of being sick it's the little extra things you don't get taught and I guess having being through all these surgerys and hospital stays and being so unwell I learned them and many nurses aren't lucky well lucky is maybe not the right word but to know what that's like to be on the other side and for that am greatful for because without it I wouldn't be the caring person I am today,which when I am well enough to return to work I will use it to help others. I mean a smile and treating someone with dignity and respect really does go along way when your unwell.

Walking up its that moment you think your fine till you go to sit up and I really felt like a bus had walloped me in the chest Its so hard and painful to get up first thing. I managed to get up and dressed and took my antibiotics and painkillers moved through to the seating area I just had to wait on my chest x-ray and my pacemaker settings being adjusted. I had my breakfast which consisted of cold toast and tea as always in hotel Royal Infirmary. Suddenly I started to feel dizzy lightheaded and faint as the nurse coming on shift walked passed I shouted out that I didn't feel to good yep I felt like an idiot as the people sitting stared at me its always the same though people are just so noisy, but I did create a bit of a drama it wouldn't be like me, lying me down on the bed my blood pressure had dropped and was so low giving me water and pulling a curtain round they checked it again it was still low, after about half an hour and them giving me more tea and biscuits it was still low they phoned my cardiologist , he does make me laugh he asked them to check it again and it had just dropping even lower he then asked them to give me more food and drink and he sat me up a little in bed  coffee seems to be his answer to everything haha but in all seriousness i was just wiped out and basically he thinks its just to do with everything I have been through with the infection, having to fast and it all just been a little to much at once. Luckily a few hours passed and it came back up slowly, it got there just enough that I didn't feel so faint and horrible, took round to x-ray I got my chest x-ray and taking the bra off was a mission I was in agony, and required the student and radiographer to help me get it off its funny how you don't become embarrassed anymore at taking your clothes off when  your that used to it,  peeing in bed pans and needing help after ablations and taking your bra off for heart scans and ecgs the list goes on but really you don't care who helps and looks at you when your unwell.

Next was the pacemaker check so things were explained again and this time a little bit better, my pacemaker was set to 60bpm so when my heart rate goes to drop below 60bpm my pacemaker would kick in, the  rate response was turned on since my heart doesn't increase like a normal persons should this would mean it would increase  how it should depending what I'm doing, she warned me she was going to switch it off and as she done it Suddenly I started feeling my own horrible heart rhythm and it made me remember that all the pain and heartache was worth every minute to never feel like that again even just for that few seconds it was awful I could feel it slow and pausing and the horrible crappy side effects that come with it she didn't do it for long but my pacemaker had been working and when it was switched back on it was gone like a huge weight had just been lifted it was one of the weirdest strangest things I have ever experienced but it really hit home and made me see the positives having the pacemaker there to not ever feel  that way again, next she sped it up which is strange again when your lying there doing nothing and suddenly you feel your heart racing like your running yet your not moving, having ist and sss am used to my heart racing randomly but it's strange when they control it by a few clicks on a computer, it was all set so I was free to go home the nurse changed the dressings which I didn't expect because it wasn't done the last time part of me wanted to look as the dressings came off but she told me not to, I hate the fact I now have 2 scars but its a part of me and everything I have been through and having that few seconds of feeling my own horrible rhythm is another scar really a big deal and no it isn't to never feel that way again a million scars wouldn't be a big deal if it means kissing goodbye to my own horrible heartbeat.

I'm on antiobitocs and strong painkillers to hopefully prevent an infection happening again which is now  my 7th dose of antibiotics in the space of 3 months but here's hoping this time round is clear sailing.  Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward, I may stop to rest, pout and even cry sometimes, but  always I get back up, life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to, am in pain, pain I haven't ever felt before am beyond exhausted emotionally tiered and a little frustrated but its not a race I will get there eventually and having this 2nd chance,  and 2nd pacemaker I will achieve everything I have ever dreamed of and even though right now I  do feel further back from were I started times a healer and that's all I need is time I know I will smash this eventually. I mean what a birthday present a second pacemaker at 25 it wasn't quite how I had planned or dreamed  to spend my first few days of being half way to 50 in hospital swallowing antibiotics and painkillers but there could of been a lot worse ways right ? I did manage to enjoy a meal and a few cocktails on Saturday the first time in a long time but hopefully many more to come with this new battery operated ticker.

                                                                     
                                                                               

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Even the strongest people break eventually

When I woke up last Thursday I didn't need Facebook  time-hop to remind me of what day it was, a day that I will always remember, a day of heartache, pain , tears and sadness a full 2 years has passed since my second failed ablation and I was diagnosed with ist, Lying on the bed in the cath labs and my cardiologist telling me he couldn't slow my heart down I still feel the tears that slowly dripped down my face from the pain of him trying to ablate my heart were I stupidly had told myself to grin and bear it a little longer in the hope it would be fixed, the whole experience of my second ablation was awful, My veins were so bad before hand with how unwell I had been, and attempting to sedate me couldn't be done my veins were collapsing and none existent so I decided along with my cardiologist  to just go ahead anyway with just the local .. Word of advice to anyone going for an ablation always take the sedation as its not the nicest feeling your heart been burnt wide awake compared to my first and third which were a walk in the park I remember nothing just certain little parts were I had came to, but had just been sedated again  ,I felt like my  whole life had came crashing down in seconds, all hope of ever being better, was gone I felt completely numb ,back in the ward I did  not understand any of it, what was supposed to be a simple fix I never thought for a minute , I would be texting Dougie to say it hadn't worked and it couldn't be fixed, I'm pretty sceptical about how the word depression is throwing around but if this is half of what it feels like to be depressed then I really feel for people who suffer badly as it's such a dark lonely place to be in, I spent the rest of the day  in the ward just staring at the walls losing all hope of ever having a normal working heart, and found myself phoning my cardiologist the next day to explain it all again, part of me hoped maybe I had imagined it, or had misheard but I hadn't it was real, it was real doctors didn't know how my heart could be fixed if it ever could be at all.

2 years on and if I knew back then what I know now is a rainbow does shine through eventually I mean my hearts far from fixed but things are a lot brighter it's crazy when I look back over the 2 years at how much I have achieved and done the biggest being a mum, another ablation that did lower my heart even a little ,an amazing 8 attempts on the day to drop it a little, a tilt table test, the lovely task of getting my adrenaline levels checked by having to pee in a large jug for 24 hours,very glamorous, as you can imagine ,more 24 hour monitors,spending the summer in hospital were again i spent days staring at the 4 hospital room walls just hoping some day things would get better,  diagnosed with sinus node disease and hearing my hearts damaged which is something I will never know if it was passed ablations or always so bad, it just stayed hidden ,a stress test which is no fun being on a treadmill with a heart rate of 35bpm that wouldn't increase even with activity  and getting my pacemaker it's been one mad journey,  but I overcome it all, as people say what doesn't kill you only makes you stronger, the hardest part is accepting it all and finding and adjusting to life as your body needs you to ,nobody's perfect it all takes time, I have no regrets going for any the ablations and none with getting a pacemaker at 24, i always just wanted to be better and have never lost hope that even though my heart can't be fixed that over time things will get better, and easier. Having this is a huge part of my life but I will never let it define me as a person, or stop it letting me achieving everything I want to do, and the biggest one right now is just being well and fit to go back to work something I haven't done since October 2014.


A week later waking up on Tuesday morning I woke up feeling fine standing making Dougie a cup of tea before work and Kian some toast it suddenly hit me my heart started to race the dizziness and blurred vision I got down on the floor sitting waiting for it all to pass its something you get used to but it doesn't get easier, you just know it will pass eventually you just hope enough that you don't have to make that dreaded trip to a&e to get medication and fluid through a drip to slow it down  but having the pacemaker means I do have the luxury of swallowing as much ivbradine as I need to slow it all down which was a huge reason I decided to go ahead with the pacemaker for that luxery  ,as Dougie walked through the door he knew right away he didn't need to ask, the colour had drained from my face , to say I felt terrible physically and mentally was an understatement poor Dougie was left watching Kian and getting ready for work all at the same time as I lay slumped on the sofa. Dougie phoned his mum to come down and help with Kian I just couldn't do it and it hurts so much knowing I'm  his mum ,yet  physically I knew I just cant look after him, the fear kicked in along with everything else if I did black out with him alone.The next day after spending most of Tuesday feeling awful and sleeping the day away, I picked up the phone and called the pacemaker clinic were the pacemaker tech asked me to come in straight away, heading to the hospital they checked my pacemaker over and have to say it was the strangest thing in the world when they said they were going to speed my heart up, lying on the bed my heart did start to race by a simple click of a few buttons on the computer, I still don't think I have got my whole head round the fact my heart can be controlled by a computer it's just the weirdest thing,it was over quick like she had promised, she asked me if I had somewhere else to be ,because they were going to have to phone the on call cardiologist to see me , sitting back in the waiting room the fear of the unknown started to hit me, everything running through my brain,  Luckily I didn't wait to long, took into a different room the cardiologist checked my wound which didn't look infected but he couldn't be sure if there wasn't an infection inside, since I just finished antibiotics he decided against it and if it gets any more painful or I feel ill I have to come back, told to rest and giving painkillers for the discomfort I still feel from the pacemaker pocket, but I guess having a 1 year hitting it nearly everyday isn't helping, He started to ask about how I had been feeling unwell and what had made me come along to the hospital ,were I explained how I had been feeling, and how in the space of 2 days I had 3 near faints and the episode before Christmas when I had fell and blacked out when the ambulance arrived my heart was fast,asking again did I feel my heart racing I had to remind him I didn't always notice it how just sometimes  it came out of the blue,the dizziness and breathlessness, and sweating would strike, I also explained how I had a baby and for my own peace of mind I just wanted to know what was normal and what wasn't  ,I explained  what my consultant had told me about my heart being damaged and how I knew I would always have problems but it would help to know what's going to be normal , I got the most confused look ever, were he said you have had an ablation so you shouldn't have fast rhythms, were I found myself explaining I have had three, and it still races , my hearts sinus node was damaged so I knew as my consultant had explained I would always have issues ... its so frustrating when you find yourself explaining and knowing more about it all than a cardiologist does who just sits and stares blankly but I guess that's the problem with having very few cardiologists that know about ist and sinus node disease , the end result was I was giving a 48 hour heart monitor and that since my consultant knew me well and its only a few weeks till I see him in the clinic, that I was just to take it easy keep my fluid and salt intake up and if I feel really unwell or black out to come straight to hospital. I so wished I hadn't messed my fake tan up the other week, not to mention how glamorous it is not being aloud to wash or shower for 2 days, not fun.

I always found Appreciating the good days and when it's a bad day just focus on feeling better tomorrow, we all have that day when we're fed up and exhausted of it all but it's how you deal with it I just feel at the moment it's like a roller coaster, not knowing the next bend or when the ride will stop, if it ever does stop, it's the fear of the unknown what's next, the last time I had met with my cardiologist he always said worse case scenario more ablations, I just want to return to work, get on with life and being a mum, kians so full of life, yet some days I physically just can't keep up with him, and the scared thought of having to make more hard decisions, I don't no what my clinic appointment holds , seeing my cardiologist for the first time since my pacemaker and what's next, he always said he wishes he did have a magic wand but life's not a fairytale as much as I wish this was all a bad dream that I would wake up from I try to stay positive but even the strongest people break eventually, it all just feels hard sometimes  I find myself getting random flashbacks of hard times it's like I had blocked it all out when things were to tough, and I know I coped before so I can do it again , like how I started this post I know I will be looking back on everything in a few months, or a years time thinking mentally i survived it all, it all just makes you stronger.

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8 Important things every IST sufferer wants you to know.

Well Since this is my first blog update for 2016 I thought I would kick it off with incredibly important things every IST sufferer wants you to know.  When you have a look on the Internet I always find it so frustrating how IST ( Inappropriate Sinus Tachycardia ) is made out to be something simple just 'a fast heart rate'  but its life changing and debilitating, I like to describe it to people as imagine running a marathon, running on top of another marathon with the flu, its no fun when your heart races everyday and as the day goes on it just gets faster and faster certain factors make it even faster,your blood pressure drops at random times leaving you feeling exhausted worn out .. yeah even when your asleep your heart races so its something that never stops. As all my loyal blog followers know IST has left me with Sinus Node Disease, and my heart is now damaged. Getting a pacemaker implanted means when my heart doesn't beat properly it kicks in to help it and acts like a back up, but even with a pacemaker it does nothing for the fast rates, frustrating right that there's really nothing that helps slow it down?,  then, there's the lovely drug Ivabradine that helps a little, which brings along lots of lovely side effects , I hope these simple facts help sum up IST

comments like this for example are still being used on a daily basis, they can come from anyone friends, family members and strangers. To a person who is battling health day in and day out these comments can be frustrating and very upsetting.

1. IST effects everyone differently.

You may not know but IST effects people differently theres mild, moderate and severe, everyone sufferers in unique ways no 2 people have the exact same symptoms and the severity of symptoms can differ aswell. Some people with IST might be able to do more than another sufferer but this in no way means that just because you can tolerate more exercise or do more, doesn't mean it doesn't effect your life 100% it does.

2. If you got fit it would lower your heart rate.

for anyone who isn't aware being super fit and healthy normally means your resting heart rate is low, Some professional athletes  have a  lower  resting heart rate than normal because there so super fit, but having IST doesn't mean its because your so unfit,  to start off on this subject people with IST are exercise intolerant which means they struggle to exercise, having IST and exercising just increases your already fast heart rate even higher which in turn just makes you feel even more awful, very little exercise will easily push the heart rate through the roof, so no matter how fit you could be, having IST  is nothing to do with how fit you are, you would still have a heart rate over 100bpm, rubbish right ?

3. I do not have anxiety/ its not in my head.

This one is the one that frustrates me the most and I hear people with ist talk about it all the time on support pages etc , to be told its in your head is just the worst thing you can here, because IST is a problem with the hearts sinus node an ECG will always appear normal just fast so when sufferers start having problems, and one of the first tests is an ECG it always appears normal its like because medical professionals have no clue as to why its fast they put it down to anxiety or panic attacks, and its hurtful to know it isn't and to feel like no one believes your actually not making it up that its real and not just in your head, when people ask me  for advice and how I got diagnosed it took lots of 24 hour tape monitors I have actually lost count of the amount I have had its been that many, an ep study a Tilt table test and my cardiologist writing and showing my results asking other specialist opinions to get my diagnose of IST.

4. You don't look sick

IST is an invisible illness, people cant see that your hearts racing, they might see bags under your eyes because your so exhausted from your heart racing day in and day out and I look like a complete zombie without make up on , it's like saying to someone going through a divorce you look like a divorce it just doesn't happen so why should invisible illness be any different, it's hard to describe to people how you look totally fine on the outside but inside your not, It's hurtful when people are ignorant to it all because they can't physically see how bad your heart is or can be, I find myself getting embarrassed using disabled toilets etc to save my heart on the stairs, because it's awful just going to the toilet and using stairs how Unwell you feel and smart remarks are just vile and hurtful it would be so nice to manage to walk up or down stairs and breath like a normal human being instead of a 40 a day smoker, you don't have to look sick to be sick, so the next time you see someone using a disabled parking space etc they don't have to look sick to be disabled.

5. I may appear drunk or on drugs, but I promise I am not.

This is another one that really frustrates me with ist, when I first started have syncope episodes and took to hospital, I was always asked if I had took drugs or been drinking, you may appear to be drunk and on drugs your confused can barely piece words together, and your heart rate looks like you've been on something, it's so hard to explain you aren't it's the brain fog , a syncope episode leaves you confused and you actually feel drunk  it's like your body just doesn't function properly or barely at all and it's even worse because lots of medical professionals haven't even heard of ist so yeah you look like a crazy person who's just made up an illness, it's so hard to explain over and over your not drunk or took anything sometimes it's easier just to say nothing , even last week at my GP she couldn't understand why I black out from a fast heart rate and even said it was impossible for someone young to pass out from a fast heart rate how you wish it was impossible life would be easier for an ist sufferer if they didn't feel the way they do, the best advice I always give when asked by others .. Print off the ist leaflet from arrhythmia alliance web page and always show it, it's easier to show them a leaflet explaining things  than sit and explain were you get crazy looks your really not crazy and making the whole thing up to disguise your on drugs or drunk.

6. Just because I'm having a good day doesn't mean Its no longer there.

Another very misunderstood aspect of IST is the 'good day', 'bad day' side to the illness. To explain very briefly all this means is that on a 'good' day you  won't be suffering as bad as you normally would, the symptoms are very much still there but you can push on and make the most out of the day
A 'bad day' means that a sufferer will spend most of the day in bed feeling extremely unwell, unable to do much at all,your usual symptoms are exasperated 100x more on these days and these days are the days that your heart is beating crazy mad. So yes, even though we can have better days that unfortunately doesn't mean that its all getting better.And the days are hearts do beat fast but not racing, have probably took a lot of resting beforehand and lots of tablets to be able to do so. Always bare in mind, if we did something last week for instance we maybe won't be able to do that again the next week, everyday is different, it all just depends what our hearts are doing that day.

7. Just because we are smiling or not talking about it doesn't mean its not effecting us.

This maybe doesn't go for me because as Dougie would tell you am constantly moaning about my heart and how rubbish I feel, but I tend not to tell others and only Dougie when I'm feeling 100 % awful I tend to carry on as normal and not say a word, people with IST could probably win an Oscar for acting and pretending like everything is ok when inside there fed up, frustrated,  and just longing to feel ok,  the trouble is tell to little and people assume your better and ok, share to much and your scared of being a hypochondriac so really you cant win.

8. There is no cure for IST, its all about managing symptoms.

To this day there is no cure for IST,  Sufferers are often told they could grow out of it basically just 'wake up and its gone' as my cardiologist put it when I was first diagnosed.. yeah I was so glad Dougie was in the room with me to hear that one haha !, but this has never been proven. Since there's no cure, its all about managing to live with it, using medication to control the heart, increasing salt and fluid intake , there's also an ablation but an ablation of the sinus node (either to modify the node or destroy it completely) has been used with some success, but this is variable and may not be long-lasting, as the Sinus node just repairs itself so the IST will always comes back  not to mention an ablation carries its own risks.  Many people with IST are told there to young for an ablation and some doctors even disagree with carrying out one for IST.


Unfortunately, to this day nobody knows why or what causes IST. There is some belief that IST is a result of the sinus node having an abnormal structure. There is another view that individuals with IST might be super- sensitive to adrenaline as the smallest amount of exertion can cause a pronounced rise in the heart rate. However, a number of informed medical professionals believe there is a number of factors and disorders that point to disturbance within the autonomic nervous system.

                                                      




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