What living with an invisible/chronic illness is really like

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

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

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

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

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

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

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


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

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

Your to young to be sick 

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

You don't look sick 

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

just get on with it

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

It must be nice getting lots of time off from work 

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

what if you exercised more ?

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

 Its in your head/anxiety 

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

I know someone with the same condition and they manage

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

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


Can I come over ?

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

Sending a message

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

I understand

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

Hug

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

I believe you

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


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

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


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

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One year After my second failed Heart Ablation

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





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

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

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

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All I want for Christmas is a cure

                                 If only Santa could cure IST

The last few weeks since Kian's been born has just flew by, I had planned to write a post for Kian every week, I cannot believe he is nearly a month old, it feels like yesterday I was just pregnant, but at the same time, it feels like we have had him in her life's forever (in a good way of course :) )

                    

1 Week old belly button fell off.                                         

 2 Weeks old he know weighs 6lbs 15oz

3 Weeks old he likes to eat his hands and is more awake during the day

Daddy went back to work and all the visitors calmed down after the second week, but for me my health took another bad turn. My midwife came out to the house one Tuesday afternoon were I had told her I still wasn't feeling 100 percent myself and was having bad stomach cramps on and off since having Kian, She sent me to the doctors were I was giving antibiotics and told I had a Womb infection but after a full week of antibiotics and rest I still felt no better, my midwife returned on Sunday afternoon by this point I felt even worse having to rely on Dougie to help me even just get out of bed as the feeling of passing out kept coming over me and spent most of the day's just sleeping when Kian did. The midwife was shocked when she took my blood pressure which was so low, something which she had always seen so high, I was sent to hospital were I was booked in for a scan and giving more antibiotics. I had also phoned this week and moved my appointment  with my cardiologist forward as having to wait till January I felt was to long since things were starting to play up and the fear of fainting or becoming even worse with a baby I didn't want to happen.

Going to my appointment with my cardiologist with Kian was like a military operation having to get to the other side of town so early in the morning, and to make matters worse it was snowing it was the earliest I had managed to get out the house since having Kian. Seeing my cardiologist I have decided to go back on the medication called Ivabradine which only last year was the drug that had made my heart rate to slow but this time a half dose, as he feels to do anything to drastic so soon after a baby would be silly, the only problem is I have to wait till I stop breastfeeding which I feel so gutted about. I am going to try and keep it up as long as possible but he has told me to outweigh  how I feel as risking fainting and hurting myself .. not to mention now I could hurt Kian if my heart does cause me to black out is it worth it?? So I have decided to breastfeed for a few more weeks then I will change back to ivabradine

The health visitor had come out to check Kian who had lost weight but at 2 weeks old weighed an amazing 6lbs 15oz, he is also very laid back,  Dougie thinks we should of called him laid back Luke, he is also very strong trys to hold his neck up already and also manages to push himself all the way to the top of the cot. Kian loves his hands,there never out his mouth. He follows our voices and likes to watch the lights on the Christmas tree, the first few times we bathed him he screamed but now he is very quiet ( hope he likes water as much as me ) he also likes to go for walks in the pram.

Like Mummy he has been through the wars already at a week old we had to take him to the doctors as he had an eye infection but when putting drops in he didn't cry instead sat there quietly.


                                      Sometimes the smallest things take up the most room in your heart <3

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Strong mummies really do make strong babies

Hey Everyone

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

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

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

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

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

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


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

Baby Urquharts little foot :)

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

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

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

 The cake my brother and his girlfriend got made :)

 Dougie made all the food.

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

 Baby Urquhart is one lucky baby.

 Family and friends are everything.

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

Lots of Love and Hugs 

Heart Rhythm Week :)

I appreciate this may be a quite a long post but please just take 5 minutes out of your day to read this and donate to the heart rhythm charity

.http://heartrhythmcharity.org.uk/www/571/0/Donate/

'you don't look sick'
'you look fine'
'it cant be that bad'
'you still get out'

These are just some of the things you hear all the time purely because people aren't aware. I don't tend to tell people how often I feel unwell or how things affect me daily for the reason people don't understand, even when in hospital feeling really ill and exhausted I've still tried my best to work and gone out and seen friends even for a few hours its amazing how good you become at slapping a smile on your face and saying you feel ok but truth is your feeling awful.

Try to imaging each day you feel like your doing a gym workout, the feeling of been out of breath and your heart pounding except it never ends and your not exercising, the dizzy feeling comes on the sweat and heat you feel on your back and hands, ears start to ring but a dull ring until you wake up lying on the floor, or sometimes if you manage to beat it taking to lying down on the floor to try to make it stop to prevent the black out. The feeling that comes after of been exhausted feeling so sick some times feeling so bad sleeping is the only option to make it all go away.
The terrifying feeling of fainting alone or the feeling of waking up in the middle of the night with the feeling of your heart racing the panic that goes through you when you know you need to relax and stay calm because panicking makes it worse.

The tablets we take everyday, morning and night just to slow the heart down and stop it racing, but even on bad days these tablets do nothing, and when you are poorly and its caused a trip to the hospital the same routine of chest x-rays, cannulas, drugs, ecgs, bags of fluids and chats with every medical professional under the sun and the waiting game of the heart slowing down.

The feeling of worry when you wonder if you will make it to the shops, the feeling of dread when you feel all the symptoms come on and no by lying on the floor to make it all stop will cause the public to stare and raise a eyebrow and if the shops are busy makes it all a lot worse as the anxiety kicks in to.

It can also effect you mentally as well as physically, feeling scared and alone when symptoms do start the feeling of been alone and fainting and relying on members of the public to help,the dreading thought of will you wake up ok, the feeling of hurt when people look at you like your on drugs or drunk, crossing pavements and roads to keep away from you when all you want is help and it all to stop. It hurts to have plans and have to cancel them and seen all your friends have fun whilst your at home struggling just wishing you could be there. It would be nice to not  have the worry and anxiety of ' will I manage today'  having no control over any it the sadness and anxiety spreads to other parts of your life.

I am really lucky that I have good friends and family that understand but there is always going to be people that don't get it, just think your making it up and think your being a drama queen they don't understand how one day you can be fine and the next day your struggling.

A few years ago when I collapsed and my heart just wouldn't slow down,it was the scariest time of my life  as I lay in hospital  helpless waiting for them to slow my heart down the doctor at the time was really good and after a few hours my heart rate did drop ... just never enough even after two ablation procedures my heart continues to race making each day a constant battle, but getting through each day without fainting is a bonus something others take for granted.

Some fast facts

 1.000.000 people suffer from an arrhythmia
120.000 people experience unexplained loss of consciousness each year
100.000 sudden cardiac deaths occur each year
30% of adults and 39% of children are misdiagnosed with epilepsy when they have a heart rhythm disorder
1 in 85 people has experienced an arrhythmia

If you've got this far thank you, please share this blog, we want to raise as much awareness as possible an arrhythmia is part of me , it doesn't define me and without any of this I wouldn't of met some amazing and wonderful people. I take each day as it comes and each day I am thankful that my heart does beat and with each day that passes I am closer to my goal of raising awareness and not letting any of it beat me, but in fact making me stronger !

'Beacon of hope for the little girl that doesnt have any.'

 I decided to do this blog to raise awareness and help others but also to be honest about my personal struggles with heart rhythm problems and  how I have struggled with anxiety due to this condition, and how even going out alone became a task for me as the constant fear of fainting and been alone when it happened became a huge problem I even suffered a few panic attacks just going to my front door because the fear of fainting outside made me feel so frightened. Anxiety issues which is something I am coping so much better with now I know others aren't always open about it, life can be difficult but fighting through the pain is worth it its better to feel emotions than to have felt none and I found by allowing myself to feel the one thing I had been pushing away and speaking about it and being vulnerable made me accept the way I was feeling and became the path to beating the anxiety I felt because of my heart problems , also I surrounded myself with positive people and stopped wasting time on people who didn't appreciate me or bother to understand the way I was feeling or what I was going through. Become your  own  best friend I have learnt to become my own best friend as  I spent so many nights crying being sad and feeling let down that the cardiologists weren't able to fix my heart, but I learned that being my own best friend and comforting myself helped to overcome the sadness and anger I felt,  I also found to keep secrets can be so toxic ,keeping the way I was feeling just made me feel worse as I hid away from everyone and everything, which just led to me becoming more angry and isolated myself from the ones who love and care about me So if you feel this way share your secret it will make you feel so much better.

What makes life valuable is that it doesn't last forever, what makes it precious is that it ends, time is luck so don't waste it hiding away from your emotions or secrets make the days in your life count for something fight for what matters to you, share your story and you may help someone speak about their emotions, which for me helped me beat the way I was feeling.

I hope my blog can help,  teach and motivate someone else to find the courage and strength to do the same and never give up if your feeling/ going through hell keep going everyone is entitled to bad days. A secret shared is a secret halved.

Heat and ist don't mix !!!

If others suffering from ist are reading this am sure you will understand the difficulties of heat and tachycardia, for the past few days I have really been struggling. I used to love the sun and would sit out for hours with friends but sadly these past few days I have realised how much my body can't cope anymore, walking to work early the other day the sun was warm and managed to make it to the end of the street but having to grab onto a lamppost the blurry feeling in my eyes, my ears ringing loudly and that feeling of not even been able to catch my breath I managed to sit on the wall my heart still pounding.After letting it all calm down continued on my walk feeling pretty upset that once been fit and healthy running and walking everywhere how much even a slow walk leaves me feeling like I am going to faint, and then been late for work making my day even worse. I am even finding these days going for a warm bath or shower is becoming a difficult task .. With little heat just sending my heart rate over and making me feel unwell, even just moping the floor the other day left me having to lie down for hours, but did enjoy a little day out with my brothers puppy oscar even though the 2 of us were so exhausted we fell asleep in the car. Me and dougie are also in the process of cleaning the house out as we are going to head to the local car bootsale and raise some money and all the funds are going to go to the heart rhythm charity as they have provided me with so much support and can't thank them enough !

Me and Oscar enjoying some sunshine .. this day left me so exhausted !





Don't no if it's pregnancy hormones but the other day was feeling pretty angry at an online support group .. A good friend of mine Helen black who helped me when I was diagnosed and she has recently been diagnosed with pots posted a comment onto the page .. And received rude nasty messages when all she wanted was advice and support/someone to speak to going through the same thing, these support sites just make me angry as it feels like some people see it as a competition who's the sickest or some people are just so opinionated and need to think before they speak all this just makes me feel sad that some people are just horrible !


Will be updating after tilt table test on Tuesday ! Which I am really dreading already !

Lots of love and hugs to everyone following this page and hope use all have a fabby Easter xxxx


My heart rate after walking !



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