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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Facing your fears and finding the little person within

I am never really one to talk about this sort of stuff on my blog as I hate to show weakness and always try so hard to not let my heart problems get to me or even upset me, but for me that's slowly becoming difficult, but I want to be honest about the way I am feeling and also am sure others can relate to  it all but are maybe scared or to embarrassed to talk about it, the fear of being judge as mental health is something that people are afraid of or are afraid to admit, one thing that stops me telling people around me is because I don't want to be treated any different I don't want people frightened to say or do things around me I don't want people to feel sorry for me I just want to share how I am feeling as this is my blog and my journey and I hope could maybe help others in the same situation.

Things have been so difficult since having kian my health has been slowly getting worse and last week things were just taking its toll on me,just generally feeling fed up I felt like I was stuck in the middle of being happy and sad I didn't even no how I really felt, I just felt consumed by guilt that's been eating away at me for months blaming myself for kian stopping growing when I was pregnant thinking if there was anything I could of or should of done different blaming myself for discharging myself from hospital all the time and not increasing my medication when I was told to, when maybe I should of listened, hating myself for not been able to look after kian how I would like to, getting frustrated at how I sometimes fear doing things or going out because the fear of fainting is just to much and above all just feeling so frustrated that I just want to be better,spending days just feeling teary and with each passing day just getting more frustrated, the nightmares that would wake me up during the night where I just wake up panicking and just feel so frightened or when I try to sleep and physically feel exhausted but everything runs through my mind, I knew it was all just getting worse and with my next ablation coming up I just keep thinking if it can't be fixed again I worry how bad I will feel,after my second failed ablation I just felt numb and the day after spent the day walking through town and I just amazed everyone how a day later I could do that, but it was my way of coping and just trying to forget, I hate the feeling that I drag everyone down around me and knew that if I just focused and said I was fine then I wouldn't have to admit how bad I did feel.

The hardest part was making the appointment with my doctor and finally finding the courage to admit that I felt I just wasn't coping with my heart problems at all and how difficult it was on bad days and having Kian, she started asking me questions about Kian like his he eating,sleeping growing can I play with him and after me answering yes to every single question she simply said well why do you feel guilty ? And instead of feeling guilty I should be giving myself a pat on the back for being a mummy which is hard at the best of times but also managing when I am unwell hearing  words  like that doesn't make you feel better, hearing again if I was in your shoes I would be teary and fed up 2 doesn't make it easier either because nobody can understand or even relate  when your faced with such an unpredictable condition. The outcome of the appointment my doctor decided it would be helpful to talk to someone about my fears and the way I felt and also prescribed me medication to help lift my mood and explained she didn't think I was depressed my fears were real and if I didn't have these problems that fear would no longer exist she kept saying it would get better and I had to remind her that already I had 2 failed ablations what if the 3rd didn't work .. Would it ever get better ? And that's something after 3 years I have yet to find anyone even my cardiologist say it could or it would.

The next obstacle was finding a place for me to go to see someone during my appointment the doctor pulled out a big folder but I didn't fit into any the categories and the only one she could suggest and find  was a postnatal depression unit and that maybe they would help because I had just had a baby, going along for the assessment the councillor said she didn't think this was the place for me, but making me fill in the sheet they decided it was a different situation but they would happily see me and try to help the best they could with the fears I described.


When I went along to my first counselling session I really didn't no what to expect and even felt a little nervous sitting me in a quiet room with a glass of water and throwing intense questions at me I was struggling to answer them I have never been one to be open to strangers and especially when it comes to how bad my heart feels,the councillor said she wanted to gain my trust and just to open up so she could help, but I was finding it so hard and all I could say was I was frightened Of fainting, dropping and hurting kian ,taking me into the art therapy room with a pile of paints pens and clay she asked me to draw how I was feeling,I  just staring blankly at her as I just kept thinking how could art help the way I was feeling, she described how there's a big Danielle and a little Danielle the big Danielle who's feeling fine can do things the little Danielle is frightened and emotional and described that instead of my feelings and fears been swept aside I had to face the fear and listen to the little Danielle , she described how everyone has a little person inside themselves that needs looked after but I had to find that within me first and to find it it might help by just drawing like I did when I was little, scribbles things that didn't make any sense but they mean something to me and that would make a start on finding the little person inside me that  and was something I have never done before, I have been giving 20 sessions and then will be reviewed after that admitting how bad mentally I felt with my heart and how I wasn't coping as well as I made out did make me feel a million times better and this week my huge goal is to find that little person within me so at my next session I can maybe look at the next step of facing my fears.

Now for some positives, Kian is now 25 weeks and nearly a whole 6 months, he rolled from his back to his front for the first time is getting weighed again on Monday, he is enjoying his food and and is always just so happy, I took him along to baby peeps for the first time and he loved it think I enjoyed it better than he did his first passport came the other day since we are off to sunny spain in just over 2 weeks and I really can't wait to enjoy the sun and spent well deserved time with my boys.

 24 weeks today fascinated with hair likes to pull mums , is getting good at sitting up but still falls over if he reaches to far for his toys, reaches and grabs everything phones and tv remotes especially, doesn't like men and cries if any of them try to hold him, loves you to sing to him and when you shout no no he giggles and his sore eye finally looks like it's cleared up

25 weeks  rolled for the first time from his back to front now manages to bum shuffle out his bath chair sometimes wakes during the night but just lies talking to himself till he goes back to sleep likes to bang toys to make lots of noise.

Kian also loves to pull faces now 

  

Kians First passport picture <3

Lots of Love and hugs

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PLEASE Sponser me on my 10k challenge to raise funds for Arrhythmia Alliance.

Hey everyone well after receiving a few emails last week asking if I was taking part in heart rhythm week I didn't reply right away as I am on holiday the week of heart rhythm week, and also my next ablation is coming up soon but haven't received a date yet, but speaking with Dougie of course we are going to be taking part we  have had to change the date but an arrhythmia is a huge part of me so I love nothing better than raising awareness and some funds for a charity that's been a huge support to me and Dougie, also June marks another year for me when I first collapsed and got diagnosed with my condition, we have decided to do a 10k and even if it means crawling over the finish line I am more determined than ever to complete it, So PLEASE show us your support by digging deep and sponsoring us on this challenge.

Visit my just giving page (link below) and please sponsor us every penny counts xxx

https://www.justgiving.com/danielleurquhartxox

                                                           

                                   

Last year me and Dougie raised an amazing £119.86 please help us beat that this year !

As anyone who's been following my blog through my journey this condition has really seen me go to hell and back again more than once and has had such a huge impact on my life, simple tasks are difficult and making it through each day without a faint or having to lie down is a massive bonus, since been diagnosed 2 years ago I have spent many days/nights in hospital were I have battled for my heart to beat normal, I have already had two failed heart ablations and booked in for number 3, last year when I fell pregnant I was so frightened of how my body and heart would cope and spent most of my pregnancy in hospital were my health got worse, it was the toughest journey I have ever faced were me and Dougie were faced with so many problems one of them being our little baby was starting to be effected by all my problems and had to make the toughest decision to bring him early, he had stopped growing and his heart rate just kept increasing, Since having Kian mentally and physically things have been difficult which is why along with my cardiologist I have decided to go ahead with ablation number 3 in the hope I can be cured and live a normal life and just be a mummy to my amazing happy little boy, an arrhythmia is a part of me but I wouldn't let it define me if anything it just keeps making me stronger.

My little boy Kian he stopped growing because of my health but every Wednesday to mark another week he's been in the world I have took a picture of him beside a teddy to show how much my little high risk baby is growing I treasure him growing so much <3

Just a few of Kians pictures don't want to bore everyone since there's one for every week he's been alive a whole 23 of them <3

So Please every little penny counts <3

Love and Hugs

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Antibiotics,infection and more sadness

It's more and more difficult to keep telling yourself you will get better, because everyday your further away from the person you once used to be, no one understands the sadness,anger and weakness you feel, but you do the frustration of battling each day for good health, and it's ok that nobody understands because why would they ? When you don't look sick and always keep your head held high with a big smile on your face.

Well I made it to exactly 15 weeks infection free, but yesterday I was put on more antibiotics as yet again I have another kidney infection, picking up infections like my heart problems has just became a part of my life, but getting infections for me isn't simple my body's always resistant to the drugs, my immune system is rubbish and my heart rate speeds up even more. I didn't even notice the infection at first because I am so used to feeling exhausted and weak it wasn't until over the weekend I started to get stomach and back pain but didn't think much of it but waking up on Monday morning my stomach felt worse and started to feel sick swallowing my anti sickness tablets I just wanted to lie in a heap and sleep, waking up on Tuesday I became worse and was in more pain, I made an emergency appointment to see the doctor were tests confirmed I had yet another infection so I was giving more antibiotics and told to come straight back if I didn't feel better, this year alone I have now had 5 different antibiotics but an infection will disappear and always come back, last year I underwent all sorts of tests because of all my infections but there was no reason to explain it all.



Again I had to cancel plans because of how bad I was feeling seeing everyone enjoying themselves and having fun just filled me with sadness and jealousy I just wanted to be out enjoying myself but instead I was in bed and feeling even more sorry for myself. Looking after kian was proving very difficult  I didn't have the energy for anything and that hurts it hurts that I struggle to look after him, when he smiles it takes the sadness and hurt away for abit but not the guilt of always being to unwell to look after him properly, yeah I manage to feed him and change him and give him cuddles and love but the more physical things like carrying him around which sometimes am frightened to do especially when am sick incase I faint with no warning and hurt him or take him swimming or to classes and above all just be a mummy because all I want to do feeling like this is sleep.

Last week when my health visitor came out, even though visits should stop since Kian's over 4 months she still comes out just to see how I am feeling with having my health problems which is lovely as being so busy I  am grateful for her popping out just to see how I am doing and feeling, she's decided to write to my doctor to see about getting me more help and support physically and mentally to cope with my heart and a new baby and she has suggested a place for kian to go to that is a special creche for families that have problems so,when I am too sick and physically unable to look after him, or if I end up in hospital or when I have appointment he would go there to be looked after for a couple of hours  and basically give me some rest bite,she also thinks it's  a good idea with my next ablation coming up so I am able to recover and not have the worry of looking after a baby, at first I said no because I don't like the thought of him being so young and having strangers looking after him but she's giving me time to have a think about it and so I could talk to dougie and is coming back out next week and if I decide to go ahead it's a process of referral  forms to see how many hours I will be granted, I still haven't made my mind up as it would be a big help instead of dragging kian to all my check ups, and appointments but I can't help but feel a total failure.

My happy smiley baby boy Kian. <3

Kian is now 23 weeks and this week we started the weaning process, I had been debating about it for ages but was trying to go by the books and hold off till he was 26 weeks but after trying him with an empty spoon that he opened his mouth for and always looking at food  and his weight not increasing as much as it should I decided to try him with some baby rice and fruit purée which he loved and I loved seeing the mess he got into eating it all, my little high risk baby who stopped growing has now reached over a stone and is 14lb 11oz watching him grow is just the best feeling in the world, we also had a trip to the sick kids with kian who a few weeks ago was also sick and had a temperature clearly took after me and wasn't bothered by the slightest thing the doctor did, and instead sat laughing, he also fell out his chair the other day and didn't even cry I think I got more of a fright than he did, he amazes me everyday and he's always so happy.

21 weeks old, now weighs 14lb 11oz
                

22 weeks old, now likes to throw things out the pram and cot always laughing and smiling.

23 weeks old, we started the weaning process and he loves his food he has tried baby rice and fruit puree's loves the sound of his own voice and more active.

I also can't thank everyone who's been supporting me and following me through my journey and love all the lovely letter's, emails and posts I get and read and try my hardest to reply to them all but with a baby can be very difficult, there's also nothing better introducing new people to the ist community were I have met and gained loads of amazing friends who know exactly what your going through.

 A lovely spoonie survival  kit arrived in the post the other day, I will be spreading my fairy dust and making a wish to feel better soon.

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Put on the list for Ep study & Ablation Number 3

No matter how much I wanted to pretend I felt ok and well, I couldn't, my healths slowly decreasing again, and on Thursday when I met with my cardiologist looking back at my recent 24 hour heart tapes the decision was finally made for me to be placed on the list for another electrophysiology study and heart ablation number 3.

Living inside a body that on the outside looks so bright and beautiful but on the inside is faulty and failing often becomes to much, trying to explain to people how you are so different from one day to another, the whole of last week was just rocky, I had made plans to meet an old friend but waking up at 3 in the morning knowing I really didn't feel well, the chest pain my heart racing, I started to throw up and spent over an hour just lying on the bathroom floor being sick,. Poor Dougie had to get up with Kian and also phone into work as I was just physically unable to do anything, the battle of trying to swallow my heart tablets knowing they would help but knowing that I couldn't even keep water down I was in for a long hard day, you know its bad when you swallow the sickness tablets but they don't even help. Dougie made the decision to phone my doctor who said to Dougie to keep making sure I was sipping water and hopefully it would all pass soon.The whole of Tuesday was just a blur when you spent the whole day physically unable to leave bed even just sitting up is a challenge and I was just so grateful that Dougie took the day off work to look after Kian so I could sleep the day away, sleeping until you just feel normal but what is normal when this is a daily occurrence and just happens out of no were, the guilt I felt seeing my smiley baby boy yet no matter how much I tried and wanted to look after Kian and do simple things and just be a mum I physically couldn't the guilt just ate away at me.

   

                           I am so lucky to have Dougie who isn't just my husband, my bestfriend and my carer when I am so sick the one who just cuddles me and tells me it will all be ok, the only one who can still make me smile despite everything.

Walking up on the Wednesday, you wake up feeling not to bad and you actually think your ok, until you step out of bed and the dizziness hits you then you realise for a second you felt normal, Dougie had to go to work and I begged him not to take anymore time off using holidays to look after me because am too sick just made the guilt eat away at me even more, he phoned his mum who came and took Kian and seeing Kian smiling and going away was a huge kick in the stomach, why can't I just be ok even trying to dress Kian was a task,when you have no energy for anything Kian's just so bright and hyper and I just wanted to lie in a heap, so again I spent my whole Wednesday sleeping just trying and hoping to feel better.

Heading to my appointment the next again day wasn't a good start I had to phone my cardiologist as I was running late and the same routine of the nurse saying my blood pressure was extremely high my height and weight was checked and then the dreaded wait lucky for me I didn't have long to wait, despite being so late, when my cardiology asked what dosage I was taking of my heart tablets I just started laughing and explained some days I take double the dose some days nothing and just see how I feel in the morning and decide expecting to be told off he laughed with me but has came to the decision he wants to try again for a 3rd time, adding me to the list I explained I had a holiday book so he has decided to do it after my holiday so am not to unwell to go away, he called the area of my heart dodgy territory and that was the whole reason he stopped during the last procedure,as he explained my heart was starting to race and was afraid if he carried on it would of resulted in my heart rate dropping dramatically and needing a pacemaker to speed it back up, but  he has finally came to the decision this time he isn't going to stop and see what my heart does, and explained that no matter what happens this time I can't and wouldn't feel worse than I already do now and if I do need a pacemaker that it wouldn't be the end of the world, so the papers were signed and I was added to the list for a 3rd time, he said he is unable to make any promises that this 3rd one will be a success but is worth all the risks.

My little Handsome baby boy, Kian is just such a happy smiley baby and the guilt I feel being to sick to look after him eats away at me.

Words can't describe how nervous and scared I feel all ready about the next ablation, just holding onto hope and staying positive that 3rd time might be lucky but the hardest thing this time will be having to leave Kian but focusing on him and thinking of all the lovely things I might be able to do if my hearts finally fixed and I might finally beat all this  will keep me strong, so please keep your fingers and toes crossed for me, and thanks to everyone that has followed me on this bumpy journey, after the rain hopefully comes the bright shiny rainbow I have been waiting on.

                                        Kian at 19 weeks my little high risk smiley baby boy who just amazes me                                           everyday, who I treasure growing so much <3

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