I know what its like to be afraid

                                     

They say what's for you wouldn't go passed you, I gave it my all or at least I thought I did ,something I was so passionate about but maybe  it wasn't meant to be because it did go right passed me.

A few months back I applied for a job, I didn't tell anyone for the fear of failure, it wasn't just any old job, but a job that meant I would be achieving a huge dream and goal helping and working with others with heart problems, when I received a letter inviting me for an interview I was buzzing with excitement but also stuck with so many worries.

I had spent weeks questioning was it a good idea ? was I being stupid ?  Could I even do it ?  Would my health allow me to do it ? Would my health knock me back because of how much time I have had off being  sick ?   I even hesitated over sending the application, because if I got the job it meant working with the staff who do all my checks and heart scans  I  felt embarrassed over it,  because on some occasions my checks and procedures means your forced to be naked but was it anything to be embarrassed about ? it isn't , I throw all they thoughts to one side and figured  if it's meant to be then it's meant to be.

Sitting in the same corridor I was met with the same faces most of them had treated me at some point except this time was different, I wasn't a sick patient coming for a ECG or a pacemaker check as I walked into the room the lady interviewing knew me she was there through every ablation, that had failed yet I still shook her hand like we hadn't met before, when they asked if I wanted to be showing around,  I had been in nearly every room all for different reasons yet all the outcome of my condition, I still said yes ,it was the strangest experience knowing this time it was different, it didn't even feel like an interview because she already knew so much about me because she had asked in the passed about my life, my family and my job.

I was asked  why I would be good at the job ? Were I spoke about my own job  and what I have done which meant I could bring experience but suddenly I thought of something I could bring that most people couldn't, I could relate, I know what it's like, I know what it's like to feel frightened and afraid I can put myself in their shoes because I've been there on more than one occasion.

I know what's it like to feel afraid the main organ in your body that keeps you alive doesn't work properly

When the words "well done out of 67 you made it to our 9"  felt like a huge achievement except they words stuck for some reason, as I left the hospital I told my family I didn't think I got the job you get that feeling were you just know

 I was right.

When the phone rang and the words "don't be dishearted you didn't get the job you probably don't want to hear this but you lost out by 1 point if there was 2 positions you were second and would of got it," and there was "nothing differently you could of done"

'She wanted something else, something different, something more, knowledge excitement perhaps or maybe success in something she had a passion for just not second best'

And do you know something  when I came off the phone I cried , I gave it everything but that everything wasn't enough a huge dream shattered in 2 small seconds were I questioned what could I have done differently or what do I need to improve on for next time, except I had asked that and the words "nothing",  someone just had more experience in that aspect than I had, I still questioned everything afterwords , maybe if I had spoke more or less maybe if I had just gave it more than I already did ,I just didn't sell myself enough I guess,  I was also stuck with the embarrassment of  I need to go back and face all they staff members as a patient for the rest of my life... Yes the rest of my life because I will never be free from heart checks, and the hardest of it all knowing I was there second choice.

The only good thing out of it is they asked to keep my number and if the opportunity arises within 3 months they can still offer me the job and I will be first in line to get the position except at this point in time all I see is that fail, did she just say that to make me feel better ? I guess no one knows what the future holds if we did then we would all be up at the shops putting on the lottery and we wouldn't  have to work right ?

Except that's not the case for me my goals and dreams of helping and working with people who have heart problems will always remain the same, it's a huge passion of mine and always will be, it's something I refuse to give up on, despite that fail. I do feel so dishearted right now, but who doesn't ?we all go through stages  in our lives were we fail, wither it be an exam, a job, or even something simple like trying to loose weight (my picture says it all I fail at trying to diet all the time because I have no will power).  I will take time to work and grow and focus on the life and job I have right now  and hope that a new opportunity does arise somewhere at some point, don't get me wrong that lottery win would help out  I could live in luxury and  do a job because I want to not because I need to, to make ends meet.

It wasn't meant to be and maybe it will never mean to be? Maybe there's something better waiting just round the corner, but losing out by 1 point hits hard how close you really were, which just makes the whole situation even more upsetting.

I found comfort in my sadness, it's ok to to cry,  a dream will always be a dream unless you go out and get it and I tried  but I guess if you keep believing in they dreams and yourself one day it will come true because you can't give up on dreams life's to short to not keep believing. We all have so much to give despite illnesses knocking us back throughout life  having the experience being on the other side is something special that not many can give or offer and that's something you cannot gain because it's giving without choice.


                                                                

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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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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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Surviving motherhood with a chronic illness

Being a mum is one of the most greatest gifts in life and is full of joy  but it comes with its fair share of challenges, but when you have a chronic illness, parenting has a whole new set of challenges and worries, along with new highs and lows, not just yours but there's, repeating the word no a million times, dealing with lost shoes, socks and dummy's, the never ending chores and washing pile, the temper tantrums at bedtime and when they cant get there own way, can take its toll mentally and physically, but how do you look after a baby when you can barely look after yourself some days, and just want to sleep the day away, how can you juggle  doctor, and hospital appointments and a baby all at the same time. A few times I had been called superwoman for doing it all myself especially after my ablation, being to stubborn to ask for help and support or simply because I feel guilty leaving Kian , but if there's anything I have learnt you have to be well enough yourself to look after them, like on a plane the cabin crew use the ' fit your own masks before helping others' and that's such a big thing when it comes to being a parent with a chronic illness, and its took me a long time to actually find a balance with the whole spoon theory and being a mum, you can't just take a nap and gain some spoons back your on the job 24/7, no coffee breaks except for a good nights sleep if your lucky and its such a true saying of needing eyes on the back of your head.

 When I was pregnant, everyone would go on about the labour and  birth and I spent my whole pregnancy absolutely terrified, preparing for what was about to come, from the excruciating pain to becoming a shell of my former self , but labour is the easiest part you can take all the drugs to help ease the pain of labour and having your baby like everyone says you forget the pain, crying because your actually happy is something you can't control the first time you set eyes on the bundle of joy you carried and felt wriggle inside you for the 9 months , but nobody warns you or prepares you for how difficult and challenging being a mum is, there's no drugs for that and being a sick mummy means the road is even more bumpy but its all about learning and doing things a little different.

I wanted to share some of the things I do and that's helped me with my heart problems, It is not a choice to be a parent  living with chronic problem, You did not choose to be chronically ill, so get rid of any guilt that is eating away at you, you wont always be the best parent, partner or friend but nobody is  perfect, Remind those around you, especially the children in your life, that you love them and that you are there for them. It may not be in the ways that you had originally planned or hoped, but it is no less valuable or meaningful, a cuddle or reading a story wiping the grazed knees, saying I love you and above all just being there when they need you is the most powerful thing you can do as a mum Take each day as it comes and let the expectations of what you ‘should’ be doing fall by the wayside. Try to live in the present and find the balance in your life, focusing on all the good things. This attitude will  help you go a long way towards maintaining a positive outlook to being a mum with a chronic condition.

Its ok to ask for help, it doesn't make you a failure

I was never one to ask or admit I needed help and always tried to do it all on my own, the fear that it made me a bad parent the thought of failing Kian but not asking for help just made my health worse
I was exhausted mentally and physically which all just made my heart ten times worse which just meant I ended up in hospital or to unwell to look after Kian at all, and it wasn't nice been stuck in hospital away from him for a few days, were if I had just accepted or ask for help in the first place I wouldn't have became so exhausted So I guess what am trying to say is rule number 1 it doesn't make you a bad person asking for help if you need it, everyone needs  help and by asking for help its helping you which in turn is also helping out the little one, and something I learned is nobody judges or thinks any less of you by asking for a helping hand.

Find the balance

Parenthood and chronic illness becomes a huge part of your identity and both can fight for control over your whole life, your time, energy, and some days, sanity, and its frustrating, Kian only being a baby he doesn't understand so I learned I can't blame him when I do want or need an extra 5 minutes in bed or a rest and just leaning to adapt helps, I found taking him along to a local play cafe were its all mats and baby proofed I could let him crawl about  and play and I could sit on the comfy  sofa with a cup of tea and just switch off for that 5 seconds without the worry of him hurting himself, and the added bonus there's other children there which meant a cup of tea without a baby grabbing onto my leg demanding me to play so always make sure that you take care of your own personal well being, as well as caring for others these are all important to finding the balance.



Get the extra support that's out there

I was amazed at how much support is out there for mums and dads who do need extra support wither it be down to an illness being a single parent or even just finding the whole thing difficult there's so much out there from places to go and speak to someone, wither it be lacking confidence to go out and do things, or just to talk to a friendly face, there is support were you wouldn't be judged health visitors and your own doctor can guide you in the right direction, even reaching out to other people via support groups who are going through similar struggles  can provide the emotional support needed to get through the toughest of days and be a great source of encouragement and advice, and its a great way to meet new understanding friends.


Know your limits, don't over do it

If you are having a bad day or you feel like your running low on spoons order a  take away for dinner ignore the house work  it can all wait. Your health and well-being are more important than a dirty-dish-filled sink or a messy floors,  don't focus on the negatives this is understandably more easily said than done, but understand that you are not your illness. The ability to find some good in even the smallest things can change your life on a daily basis, its amazing how changing your mind set can help mentally as well as physically Rome wasn't built in a day and if you start looking at life from that view you will realise you will get there eventually just knowing your limits and boundaries.

Limit children to one baby proof room

Limiting small kids to one room and baby proofing it can make things manageable when your having a bad day, I found getting down on the floor to there level and hunting and moving anything and everything that could become broken or go in small mouths and putting a stair gate on the door, I didn't bother with fire guards instead blocked the fire place and TV with the coffee table and large toys that stopped Kian been able to get through, yeah my living room looks so untidy with toys and things everywhere but it makes it great for a day when you need to lie back on the sofa and you can still keep little ones in your line of vision and buy using large toys and things is also saving the cost, you will feel like superwoman not only managing to lie down to feel better but also managing to look after the little one to.

Learn to put your needs first

I know this sounds such an awful thing to say and obviously being a parent your child is your number 1 priority but be assured, it is a good step in achieving optimum levels of health, both physically and mentally, You cannot be your best for others if you are not your best for yourself. Find time for a quick bath, listing to some music just doing anything that you enjoy doing yourself wither it be when the kids are asleep or letting the hubby take over for a night putting your needs first will improve your health its amazing what recharging your batteries can do.

Kids get bored at appointments

Having a chronic condition means the endless trips to appointments, its no fun getting an ecg done and having a screaming bored baby in the pram, I always try to get someone to look after Kian which is the easiest thing to do but isn't always possible and on many occasions I have been trying to listen and discuss my heath with doctors and Kians been crawling round the room, sometimes I have had to feed him a bottle just to get him to sit and sometimes I have even found myself apologising to doctors for Kian's behaviour but there kids they get bored hospitals are warm and stuffy so who can blame them, one tip I always found was giving Kian a new toy to play with it doesn't have to be anything expensive, and its normally the small silly things they like the best like Kian's favourite is spoons or anything that makes noise and that helps see him through the appointment, there's always the bonus that everyone is aways so friendly and chats away when you have children with you, and on some occasions Kian has even got some penny's for his piggy bank, so I suppose it isn't all bad if you do have to take them with you.

Don't be afraid to go to groups.

This was one I wish I had done sooner with Kian, just because you hear the word toddler groups etc you think running around 3 year old's but actually there's something out there for all ages and by getting out meeting new mums and children is such a good way to discuss parenting its also good for the kids to meet other children and learn to share etc from a young age and I found also kept me sane because it can be a long boring day when you do feel well enough to venture, I found everyone was so friendly at groups and if I was left sitting alone the teacher of the group would always come and make  chat anyway and by going to one group you learn of others and its great fun playing with messy play and getting involved it kills a few hours and keeps the kids amused,  places like the library, museum and park are also good and totally free or the good old favourite a walk, all the groups you do pay for are mostly small donations so one week if you are having a bad day it doesn't matter if you don't go.

Always remember the struggle won't be forever,  so don't ever let a chronic condition stop you having the greatest gift in life and that is having someone call you mum.

                                                                   
                                                           The last time


From the moment, you hold your baby in your arms, you will never be the same, you might long for the person you were before when you had freedom and time and nothing in particular to worry about.

You will know tiredness like you never knew it before and days will run into days that are exactly the same full of feedings and burping, crying and nappy changes, whining and fighting naps or lack of naps it might seem like a never ending cycle

but don't forget there is time for everything, there will come a time when you will feed your baby for the very last time. They will fall asleep on you after a long day and will be the last time you ever hold your sleeping child.

One day you will carry them on your hip then set them down and never pick them up that way again. You will scrub their hair in the bath one night and from that day on they will want to bath alone. They will hold your hand to cross the road then never reach out for it again, they will creep into your room at midnight for cuddles and it will be the last time you ever wake to this.

One afternoon you will sing the wheels on the bus and do all the actions then never sing them that song again, they will kiss you goodbye at the school gate the next day they will ask to walk to the gate alone. You will read a final bedtime story and wipe your last dirty face. They will run to you with arms raised for the very last time.

The thing is you won't even know its the last time until there are no more times, and even then it will take you a while to realise, so while you are living in these times, always remember there are only so many of them and when there gone, you will yearn for just one more day of them one last time.

                                                               Love and hugs

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unfit for work 2 years post ablation

I'm pushing myself so hard to keep this blog updated for lots of reasons but the main one is because Its my own diary and my journey were I can say how I feel, highs and lows and I know with each post I write I am closer to being were I want to be, and the biggest one is being fit enough to return to work with a better working heart.

Things have been crazy hard, I feel like I am playing catch up because there's so much that I haven't blogged about, life is full of ups and downs all the time and that's how things have been since my last update, health wise things haven't been to bad, I have had  another kidney infection but a week of antibiotics and I felt a million times better which was amazing considering I am still not on any medication for my heart as my cardiologist feels until I have a pacemaker its just to dangerous so I am still having to just ignore and get on with the horrible symtoms, It was the weekend the doctors was closed so I had phoned nhs 24 I knew straight away I had another infection with the amount of pain I was in I spent the whole night being awake doubled over in pain, they gave me an appointment right away at the hospital taking my heart rate the nurse commented how fast my heart was where I had to explain I had heart problems and that was normal for me confirming  I did have a kidney infection and giving me antibiotics I actually felt chuffed that my heart was fast but it wasn't overly fast to the point I felt faint or dizzy because normally I faint before I even know I have an infection so that was a huge bonus and an even bigger bonus when I wasn't addmitted into hospital for iv antibiotics and once I had finished the antibiotics I felt back to my normal self. My maternity leave is coming to an end soon and a few months back I went along to see the occupational health doctor were I was declared unfit to work writing to my cardiologist for advice and requesting to see my medical notes I had another appointment on Tuesday were again I was still declared unfit to return to work, I felt like someone had kicked me hard in the stomach and found myself fighting back the tears as I sat in the room along with my heart being so bad at the moment I also have contact dermatitis  on my hand which until that also clears up I can't resume, I have always liked having my own independence and making my own money and especially now I want to work to provide for Kian as best as I can and found the same scenario slapping me in the face again, of what I physically want to do against what I am able to do except I do feel able and want to return to work  The doctor mentioned that she understood how frustrating this all must be but I just kept thinking she couldn't possibly understand, how could she understand the frustrating of feeling able and well but your being told your not well enough to work. I think the hardest part of it all is thinking if none of it ever gets better is it going to be like a roundabout and that I just keep going round in the same circle of being fit one minute and not the next but she said hopefully once I have the pacemaker and I get back on medication for the fast rhythms things should be ok and it shouldn't stop me going back, but she did mention if things didn't improve I should always think ahead of the next step and maybe look at a less demanding job Also Kians birthdays coming up soon and people keep saying he wouldn't remember it but I want to make it special, but going over in my head how can I make it special when things are so tight and were living off dougies wage just made me feel that little bit more rubbish about not been aloud back to work but I guess he doesn't need lots of gifts or a huge party to make it special, and slowly found myself accepting it all wont be forever and hopefully my health will improve

September the 23rd marked  2 years since my first failed ablation and like I always mentioned in my blog I always questioned why was it fair ? Why did everyone else leave that day
fixed yet I didn't but I feel mentally its took a long time but I feel I am learning to accept it all better walking upto the doctors on Friday morning the chest pain, breathless just walking up the hill I thought back to the days were I could just walk and manage but I realize thinking of all the negatives is just making me more miserable which isn't helping anyone and it wouldn't change things, life is to short to be miserable, and losing my uncle a few weeks before which was so sudden gave me that wake up call I needed to stop dwelling on things.

My kind amazing uncle jimmy passed away the one picture I have of him and Kian at easter is something I will treasure forever.

I have always spoke about wanting to raise awareness and on Thursday mine and dougie's 10k was in the Scotsman newspaper, I was a little disappointed that the papers changed the story that the charity had drafted up, and its such a true saying never believe everything you read, but at least it raised some awareness and I hope it will encourage others to donate or even raise some money.

here is the link for anyone who wants to have a read.

http://www.scotsman.com/news/young-mum-with-heart-defect-runs-10k-for-charity-1-3897062



I have been getting out more and enjoying spending time with Kian going to baby and toddler groups, bookbugs at the library and baby peeps anything to keep busy and keep me sane until my pacemaker surgery, like I have said before its so easy to become a shadow of the person you once 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, so for now I am focusing on enjoying my time with Kian until I am fit enough to return to work which I know won't be forever.

                                                    
Of Course I can't forget to update on Kian who is now over 10 months old time really has just flew in I can't believe how quickly he's growing and becoming his own little person, he is now good at crawling tries to walk and can do it holding on but hasn't yet found his balance to do it unaided, he now weighs 18lb 9oz still smaller than average babies his age but I think Kian will always just be little, my nana always used to say smaller babies come on faster and looking at Kian I do believe that he will now play peekaboo with you were he uses his blanket to cover his face and then pulls it away and laughs he now has 2 bottom teeth and one top tooth, he makes everyday so special and my main reason I want to go back to work is to provide for him I hate the thought of leaving him as It will really feel like a part of me is missing but I guess thats part of being a mummy I can't believe he's nearly one I just feel like I have blinked and my tiny baby is gone.

Kian at 6 weeks old and 9 months old still smiling



Kian at 10 weeks old, the teddy update is slowly becoming difficult
because he won't sit still and was not happy here when I finally got him to
sit

 

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Faint 7 times stand up 8

You would think you get used to fainting when its something that effects you nearly everyday in life, it never gets any easier to accept it, if anything each time its harder known that your sick, that no matter how much you try to live each day as normal as you can, but the same barrier is put in your way time and time again.

On Friday I had one of the worst days in over a year going to my bed exhausted on Thursday night but feeling fine, I woke up over 3 times during the night that feeling of your heart racing the sweat and clammy feeling, you close your eyes just wanting it to all go away and you know if you can get back to sleep it will all disappear but for me it kept happening, part of me feeling frightened, the pins and needles in my arms and hands, the numb feeling in my legs all just got worse trying not to panic and wake Dougie I lay there waiting on it all to pass,

Waking up in the morning I mentioned to Dougie how bad my night was, but I still felt totally exhausted he phoned his mum to come and look after Kian, sitting talking to his mum in the living room that sudden feeling of am going to pass out your ears start to ring the sweat lashes off you the pain you feel in your chest I managed to lie down were Dougie's mum was in total  shock how the colour had just drained from my face, helping me through to bed and wetting my face with a cold cloth she phoned the doctor to see if anyone would come out, where we were told to phone an ambulance, but as others know with this condition its sometimes best just to sleep it off and wait for it all to pass and me being stubborn and because I hate the hospital so much, decided to do that, falling asleep Dougie's mum took Kian out to give me some quiet to sleep it off in the hope I would feel better.

A few hours later Dougie came home from work waking up I suddenly got that feeling of am going to throw up were I sat for a few minutes in the toilet, grabbing a drink of water I headed back to bed but getting up a few hours later again because I still felt sick ... But next thing I remember is waking up on the bathroom floor the paramedic asking me if I have hurt myself and if I was in pain anywhere, and the questions they start to ask you of do you no were you are ?, what day is it, ?Do you know what happened ? It takes you awhile to realise for that split second its happened again .. But that your ok the feeling of moving your body when they ask if you have hurt yourself not known but you think your ok attaching an ecg to me, my heart was beating to slow and my blood pressure was low helping me to my feet and getting me out to the ambulance I was still in shock as the faint came from no were and my chest was still sore.
Lying on the bed in the ambulance I was giving gas and air for my chest as I still had the sore tight chest pain, seeing Kian go away with Dougie's mum I just broke down into tears, feeling like a totally failure that I had spent the whole day in bed when I should of been looking after him myself. Getting to the hospital I was took straight into a bay were I was giving an ecg which showed my heart rate was still to slow and was only 41bpm next to come was the dreaded venflon which for me nobody can ever get in and if they do my vein just collapses after a few attempts the nurse gave up and got the doctor who again had to use a ultrasound scanner to get it in place and I was told I would be in for a few hours so they could keep an eye on me.
Moved round to immediate care I was hocked up to monitors again  and after a few hours my heart rate still wouldn't increase but the doctor finally decided to let me home and that he didn't really know what he could do for me as increasing my heart rate with drugs wasn't an option as I was then increasing my risk of my tachycardia and that it was best to just be left alone and that he would pass on what had happened to my cardiologist giving an anti sickness tablet and discharged home and told to rest till I had recovered, Dougie managed to drive just round the corner we hadn't even made it out the hospital were I had to ask him to pull over and felt totally embarrassed throwing up at the side of the road but too exhausted to even stand up I was hanging with one leg out the car, getting home I went to bed and slept the rest of the day/night way.


The waiting game of sitting waiting                             Kian didn't seem bothered when I wasn't
for your heart rate to go back to normal                      around leaving him because of it all really
                                                                                       breaks my heart.

Life of a spoonie when your veins collapse all the time and you constantly walk around brusied.

 As others know with this condition after a faint happens you spend the next day just feeling totally exhausted and wiped out which is so difficult with a baby and the first time I have had to deal with it. This whole week for me as been one thing after another I was at my doctors Wednesday where my hypermobile joints are worse and told its probably got worse after being pregnant, and have now been giving more painkillers and told to go back to physio, and after my routine eye check, I lost points on the visual field test so I was brought back for a redo but missing the same points again I was told I have lost some of my peripheral vision in my right eye as I also suffer from a rare problem with my optic nerve which is causing it and was told I might have to go to the hospital for it to be checked more and something that's going to have to be monitored and hopefully won't get worse, so bad news really does come in threes.




                           

Giving up isn't an option when                                                      Me and my new glasses :)
this cheeky face smiles back at you, my whole reason
for getting up each morning.

 

                                                                      Love and Hugs

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