Friday 4 December 2015

Pacemaker journey the first month Infection, and the struggles.

Firstly I decided to change my blog layout hope you all like it, since its a new chapter of my heart journey with my pacemaker.

 So since my last update things have been very rocky, nothing to serious and my pacemaker has been working perfectly, but getting a pacemaker isn't so simple especially with a baby. Firstly Kian's birthday came on the 19th of November were I felt an emotional wreck mainly because I am shocked were the time has went its like I have blinked and he's not a tiny baby anymore it was so much fun opening his presents in the morning, he was terrified of the wrapping paper so I ended up having to just open them all while he played with the cat, he was so excited and his face was a picture but with loads of toys in front of him he got abit upset I think he just didn't understand what was going on haha. We had a little party with him on the Saturday which was good fun a full house, cake and some of Kian's little baby friends. I hadn't really thought of my pacemaker this whole time I was back to feeling fine I wasn't sore and things were just going so well, I managed to walk round the shops enjoying my first ever day out with my boys were we went and seen some owls held them and took Kian to see Santa which he hated and screamed the place down but I felt on top of the world no awful symptoms its amazing how quickly your body recovers from something it was only 2 weeks since my pacemaker and apart from my scar you wouldn't think anything of it.

My birthday boy <3

Dougie surprised me with tickets for a lady's night to go out and enjoy myself up at the garden centre dobbies, the money was being donated to the teenage cancer trust, were you got to shop, got the amazing black Friday sales and you also got wine and food with your tickets at first I didn't want to go Kian had his jags earlier that day and I felt I didn't want to leave him, but Dougie was pushing for me to go and to go and enjoy myself let my hair down even for a few hours were he told me I needed my own space and I was my own person not just a mum. Getting ready and putting some make up on I hadn't really been out since my last ablation in July and part of me kind of felt a little nervous me and Dougie go everywhere together and I really don't go out much to have a drink and the fear of if I blacked out or If I felt unwell kind of started to kick in, but I got the courage and went out I had a brilliant time, there was photobooths, raffles and the best part the sexy santa and naked butler who served you wine and food, 3 glasses of wine I was a little tipsy but my heart behaved and again just didn't even think of my pacemaker.

 The next day Dougie's mum gave me a lovely gift of a voucher to go and get my hair done driving me up to the hairdressers I felt a little ill, tiered breathless and feeling sick, but I thought that's what I get for having that third glass of wine, sitting in the hairdressers the heat was killing me and just making me feel even worse I was so glad when it was over I came home and headed straight to bed. Waking up on the Saturday I still felt awful was it possible to have a two day hangover, but thinking I don't really drink it must be, I started to notice my wound was getting really scabby and sore again but then its so difficult to avoid the non lifting and things with a one year old so I said to Dougie maybe I did have to start taking it abit easier and being careful, it was only 3 weeks since my pacemaker and I was back to hovering tidying up the house, looking after Kian alone and going for walks with the pram and I had even considered trying to go for a swim. Luckily I didn't ever go for the swim I would hate to know what could of happened if I did on the Wednesday morning my wound had opened back up at the bottom and I was left with a hole, the hole was small but still I felt sick looking at it knowing it shouldn't be like that a month after I phoned the doctor were there was no appointments but a nurse would see me after me explaining the situation, going into the room it was a medical student who started asking me questions were I showed him the wound and explained everything and how I was in more pain than when I had first got my pacemaker were he said he thought I needed antibiotics, but the nurse disagreed and just put a dressing over it and said it was still healing.

 Leaving the doctors phoning Dougie I told him the outcome were he suggested I should phone the pacemaker clinic and ask advice phoning them I was told to come straight in I explained how the nurse said it would just go away, they told me a month on it shouldn't be and it had to be checked asap, so heading back out to the hospital I was took in a room straight away when the pacemaker ladies looked at my wound they decided a cardiologist had to take a look, it was a hole and it was leaking some fluid, and was quite bloody, I met a lovely cardiologist who I hadn't seen before who came to have a look were he felt all around the pacemaker asking if I felt unwell were I explained I had but didn't feel ill now. I was prescribed antibiotics and had to get my wound dressed again and have been told to not get it wet etc and if I feel unwell I have to phone the pacemaker clinic straight away and come into hospital, he explained how the worst was properly over and I have had an infection and the pressure has caused my wound to burst open a little but hopefully a week of antibiotics would clear it up and everything would be fine. I have been told if it doesn't I have to go straight back as they will need to look at doing something else. My pacemaker check up appointment wasn't until another week but since I was there they decided to adjust my settings turning it as low down as possible to help save the battery life,

My wound now.

I was told so far I was 13% pacemaker dependent but everything was fine and I wouldn't need to come back for a full year providing I felt well, I have my cardiologist follow up appointment in February, were I am hoping the wound and infection does clear up and I can avoid another hospital trip at least till the new year. Recovering with a 1 year old is so difficult especially when he wants lifted all the time, I am still unable to lift my arm without it hurting and even sleeping is painful but I am taking it much easier than I was, maybe doing to much to soon wasn't the best way forward and for anyone getting a pacemaker or thinking of getting one don't make the same mistake I did of rushing back to everything to soon I guess moving forward and getting back to normal for me was such a big thing but instead its been 1 step forward and 5 back so getting back to work unfortunately for me won't be happening in 2015, but hopefully the new year brings a better year of good health with my battery operated ticker.

 Kian is coming on so much, hes now walking, understands things likes passes his cup when he wants a drink opens the drawers to get his food out when he's hungry will put the phone to his ear, waves bye all the time even when you say it on the phone and now randomly lies down on the floor when he's tiered my little ray of sunshine.

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Friday 13 November 2015

Living with my pacemaker( the first 10 days )

Today is a whole 10 days since I received my battery operated ticker !

To say things have been easy would be a big fat lie, omg I didn't realise how hard things would be doing everything one handed especially with a 11 month old little boy that is wild, I have had him hitting my wound leaning on my chest pushing himself up using me as support to get to his feet, I haven't been able to tie my hair up  put a bra on properly spray deodorant or wash my hair because of the pain and I am also so frightened with the whole "be careful with the wires for the first few weeks"

So last Friday 3 days after my pacemaker I went for my wound check up were I felt frightened and scared to see the scar under the dressings, I sound so vain, but even though I am married and a mum I still want to wear nice tops, dresses and bikinis on holiday and didn't like the thought of looking at a horrible scar or others being able to see it, and that was the first thing my cardiologist said when we discussed the pacemaker I would have a Scar, I mean yeah everyone has some sort of  scars or even stretch marks, and I have scars from my three ablations but nobody sees your groin even wearing shorts and skirts its hidden and there so small anyway there barely noticeable but knowing it was going to be bigger and were the dressing was it would be very noticeable. As the nurse took the dressing off I didn't look but when she commented that it hadn't healed properly and she wanted to show me how the top part had but the bottom hadn't I found myself taking a quick look you could clearly see as the nurse pointed out the difference between the top and bottom of my wound, So I didn't get the dressing off or the wound cleaned I got a new dressing on and was giving an appointment for Tuesday.

Dougie went back to work On the Tuesday and its been so hard being sore and unable to do things with having Kian, I have been getting help but as silly as it sounds I prefer spending time  just me and Kian, I do love baby cuddles on the sofa especially with the miserable weather here in Scotland so  having the family coming round at half 7 every morning and staying till Dougie comes home from work was fine for the first day or two but today's Friday and I feel frustrated and have found myself saying to Dougie I will manage next week alone. I like my own space alot well with Kian I feel I have a routine with him and hate not sticking to it all, and since my pacemaker I haven't had that I guess I just want everything to go back normal quickly, yeah I sound ungrateful and I really amt I am so glad and very lucky that I do have good family and friends but it would be so nice to not be treated like an invalid or everyone making a fuss, I don't know if others felt the same but yeah I got a pacemaker but apart from being sore and a little exhausted I feel pretty good so I do want to have a little shot of pushing Kian in his pram which I did do successfully with one hand and make my own tea and toast.
I also got my dressing off on Tuesday as my wound had finally knitted together better, but found my arm was sorer than before it was like the dressing supported it as silly as it sounds, I was pretty impressed with the scar with how neat it looks for a week, it is  amazing how quickly your body can recover.

I attempted my first shower on Tuesday night how glamorous not having a shower for a week but being sore and knackered I had no interest in a shower and also I had to avoid getting the wound and dressings wet till it had healed  , Dougie had to remind me I would need help which at first I was like no I don't .... but then realising I did I couldn't put shampoo on my hair ha ha so poor Dougie has been having to comb my hair help me shower and even having to put my bra and help me with shirts and jumpers and he even watched a video on you tube on how to tie hair in a ponytail, but as the weeks went on slowly the pains getting less so I am able to do more but being advised to not lift my arm high up or lift anything heavy anything that could pull the wires till it settles I sometimes forget as its just so easy for that 5 seconds to do something you shouldn't.

Sleeping at night has been very strange I still can't lie on the side were my pacemaker is because its still sore but also feels weird which I hate because everyone has that one side they find comfy and that's mine and as soon as I role onto that side I instantly wake up so I haven't been sleeping well either, but then having Kian any sleep is a bonus.

Thursday I took Kian along to the soft play cafe with his Nana and granddad which I thought would be a good idea as I could rest grab a drink and chill out ... it didn't turn out like that instead Kian now wouldn't go in the baby area wants to play with the toddlers that are charging about with buggies so sitting on edge having to watch him like a hawk ,arguing with a mum after a little girl well say little, older and bigger than Kian after trying to take the toy off him he grabbed it back she pushed him and Kian pushed her back the mum was not happy so it definitely wasn't the afternoon I had hoped for very stressful and exhausting sums it up instead.

Today a whole 10 days after my pacemaker surgery I got put back on my heart tablets the lovely ivabradine  for my fast rhythm, even though my pacemaker settings are set to 60pbm and if my heart drops below that my pacemaker will kick in, my fast rate is still there its better than before my last ablation back in July which is something positive. I am still finding it hard to get used to it all .. like today for example standing at the microwave heating Kians food up Dougie had to remind me to move away incase it mucks the settings up its simple things like that you forget, its all taking time to get used to but I am very happy with it all so far its still so early and I really haven't done much but I am slowly getting stronger and the pains getting less with each day, So I have to say I am so glad I decided to go through with the pacemaker its really made such a difference no more faints (touch wood) dizziness, can walk further and none of the waking up feeling like you cant breath and your dying. So for anyone going for a pacemaker soon or thinking about it its really not that bad it just sounds more scary than it actually is.


I cant forget to update you all on Kian who is a full year on Thursday, I hate the fact hes not a tiny newborn anymore the years went to fast, I love watching him grow and becoming his own little person and a stubborn boy at that as I mentioned in my last post we had booked a cake smash for Kian and I was well enough to go apart from being a little sore... it was awful Kian hated every minute of it screamed and was frightened of the cake he just really didn't want to be there, and refused to even touch it were we had to bribe him with quavers, I must sound like a terrible mum but we have to bribe Kian so much these days, the only way we can do shopping is by bribing him to sit with carrot sticks, quavers or hoops anything that he loves, he hates shopping and as soon as you walk into a shop starts moaning and tying to climb out the pram or trolley. He now likes to throw everything and anything out the bath fills up his cup and throws that with all the water out the bath so the bathroom really is a swimming pool, he  understands the word no as soon as you say it he shakes his head and also has a huge temper were he stamps his feet and screams really loud if he wants something, I always thought things with a baby got easier but infact its like everyone says it just gets harder but hes worth every minute I am so looking forward to his birthday and I hope by then I will be completely pain free and able to enjoy Kians first birthday and for me a celebration of surviving motherhood for a whole year with my bad heart hahaha


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Wednesday 4 November 2015

the start of a beautiful new friendship, my pacemaker

Wednesday the 4th

 Where do I start....

I got my pacemaker surgery yesterday and the day started out crazy mad, heading to the hospital and half the hospital being shut off for the sick kids being built we had to walk the long way round so to start off the day I was late .. not like me but yes I am always late for my cardiologist. Being took to the ward the same old checks being done before hand everything was spot on even my heart rate and blood pressure, my cardiologist came to see me after pulling the seat and sitting down beside me I really wasn't prepared for the situation I was about to face, explaining to both me and Dougie how he was still unsure if my ablations had caused the damage or if my heart had always just been this bad but the fast rhythm had just hid it  was something we would never know, he started explaining that even though my hearts sinus node( hearts natural pacemaker) just doesn't work the way a normal persons should I was still so young to go ahead with the pacemaker and even though I have awful symptoms and black out that at this point in my life I wasn't in any immediate danger, and it was at this point he asked me if I would rather wait to think about it all more, that the pacemaker would need to be done at some point but it didn't need to be done right now as he explained once it was done they wouldn't be going back in until the battery needed changed and by then my heart will be totally pacemaker dependent so really the call was up to me, the first thing I asked him was did he not want to do it, were he said he was more than happy to do and he explained compared to my ablations this would be a piece of cake for me and him, but that I had to be certain this is what I really wanted and being so young that I had to understand how many more procedures and endless checks I would need to go through and of course the main one that it wont completely solve my problems, so I had to know deep down I would still have my fast dodgy rhythm and not think this would cure all my problems, if I wasn't nervous enough I sure was now I still decided I wanted to go ahead, he explained that my pacemaker was first on the afternoon list and then I was amazed when he said normally pacemaker patients get kept overnight but since I was young didn't live far away and as long as Dougie was driving me home I could go after it which I was so happy about as  staying in hospital I hate so much and causes me so much anxiety and of course I also miss Kian I signed my name on the consent form to go ahead with the pacemaker.

Once my cardiologist left I found myself getting angry at Dougie who kept asking me if  I was sure about it all, and more angry when he kept saying how It wouldn't fully fix it all did I really understand it , I done the worst thing ever and told him to leave were I found myself sitting with my own thoughts till the porter came to take me along for my pacemaker, so sitting for nearly 4 hours alone being nervous and scared wasn't fun, but I have found I always like to cope better on my own I knew I was doing  the right thing I felt I had prepared myself long ago, way back when I was admitted into hospital and told I would need a pacemaker at some point and had faced up to already. Waiting to go I was starving and feeling like such a big baby.

Things got even worse the nurse came to take blood from me and put in the venflon were she was shocked how bad my veins were, asking me to run my hand under the hot tap the veins she did try and use would just collapse so she gave up after another 3 nurses trying and failing I was like a pin cushion were they wrote it in my notes and left it for the theatre to do. I had literally just put my gown on and my lovely paper pants when the porter came to take me.

Lying on the bed in the same corridor I had been in three times before I was so happy when the lovely nurse Jeff came along from last time I had my ablation and recognised me right away were looking at my notes I had an ablation every year since 2013 all he could say was you haven't had much luck, my nerves were calmed straight away with Jeff who told me there was only 52 days left to Xmas  and the loud banging was just orthopaedics working, so that's what would happen if I broke my leg were my cardiologist had to remind him I worked in theatre hahaha after trying and failing a few times they finally got a Venflon in and led me to the table.

I never forget the table they make you lie on its high up and feels narrower each time you lie on it obviously It cant be but its like you forget how uncomfy it is, the lovely ecg lady who has been there throughout all my ablations placed the ecg stickers on me and always asked me how Kian is doing she asked if I wanted to see the pacemaker before they started were I said yes and was amazed how small it was but at the same time shocked that this was going to go inside my chest helping me put a hat on to keep my hair out the way  I was then giving antibiotics before it started my nerves were really kicking in the lovely reg who was helping my cardiologist came and spoke to me and explained I shouldn't feel it I would be numb and sedated but that the local anaesthetic doesn't work under the collar bone so I would feel pain but not for very long  and they would do there best to  make me as comfortable as possible when it came to that part he asked if I wanted him to explain what they were doing as they done it but If  I was asleep they would just leave me were I asked to just be sedated and not know anything that was happening part of me thinks it would of been good to know, but the scared part of me just wanted it to be over so giving the sedation the last I remember was then placing the oxygen mask over my face I didn't even feel the local going in and can't remember very much at all apart from the painful part were it was over in seconds like they promised and topped up my sedation. when It was over and my cardiologist asked if I was ok I don't even know what I said I just remember him laughing and saying yeah your fine your still very sleepy though, and then trying to roll myself were they reminded me they were going to do it all its the best feeling ever known its done you don't feel sore or anything the only way to explain it is like you've had one to many at the pub feeling so cold they gave me more blankets and put my slippers back on for me.

Wheeled back to the ward I slept but was awaking by the porter with a wheel chair to take me round for my chest xray, that's when the pain really kicked in of  trying to get out of bed and standing up having to put your arms round the xray machine was painful back in the ward I was giving painkillers I was feeling so weak still and needed the wheelchair and help from the nurses to get to the toilet, when I said to the nurses I was getting home the look I got were they said no you always stay in after a pacemaker, and that my xray had to be looked at to make sure my lungs were fine and nothing was damaged and also my pacemaker settings had to be adjusted, and its all done the next day but 2 seconds later my cardiologist turned up with the reg and a machine to adjust my pacemaker settings asking how I was feeling I was just sore were the reg reminded me its like I had a stab wound  so yeah it would be sore placing a monitor on my pacemaker which was so painful the ecg lady Jill had to take the weighed from the machine so it wasn't fully on my bandage a few clicks and my pacemaker was adjusted the battery was 100 percent everything was sorted and my xrays where fine  my cardiologist said I could go home but since u don't normally get home I did have to wait till 8o'clock and if my pain did become worse they knew about it before I got home.

The next few hours went in so quickly and around 7 the nurse got me up helped me dress  and yeah I didn't realise a bra strap would be so painful , the nurse made me have a little walk around the ward to make sure I was feeling ok I was giving my discharge letters my pacemaker card to keep in my purse and a booklet on pacemakers and wound care. and at ten to 8 I was free to go home I managed to walk to dougies car without feeling breathless or dizzy, the drive home with the seat belt was pretty sore and the first night sleeping was painful, my whole left side feels like its on fire and I am unable to move my arm but all things considered I thought it would be a lot worse so for now am taking each day at a time, I am hoping to turn all my cant's into can's and dreams into plans.

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Monday 2 November 2015

Night before my pacemaker procedure.

So tomorrow is my pacemaker procedure.

A pacemaker is a small device that's placed in the chest to help control abnormal heart rhythms. This device uses low-energy electrical pulses to prompt the heart to beat at a normal rate.

Little explanation  and pictures for anyone who doesn't know what they are!

So as you all know back in July I was told I might end up needing a pacemaker I always knew it was something that could end up happening and in august my cardiologist  decided a pacemaker would be the best option, when the letter dropped through the door with a date for my surgery , it really couldn't have happened at a worst time, the day I was supposed to be starting back at work from maternity leave, it just feels like another huge obstacle in the way, the dread of having to explain that your off sick again, it would be so lovely to just recovery and not have the worry of work, or the thought if things don't work out will you ever be ok to return to work. all of it I just find so frustrating, and find myself worrying about it all, its like when you worry about one thing you end up finding yourself worrying about everything, Kian's first birthday is the 19th of  November  and I just want to be ok to celebrate and make his day special ,we are supposed to be doing his cake smash a few days after my pacemaker,  and all I keep thinking is how  all this is possible it just feels like everything is happening all at once, part of me thinks its all a good thing because I will push myself to recovery quickly for Kian, but I guess you have very little control when you will be ok to leave hospital and even little more control over how well the operation goes, so for now I know all I can do is keep a positive mind and attitude towards the rubbish situation and just make the most out of it.

 i'm getting really nervous now, I wasn't bothered before and was over the moon,  the fear was never really a thought, but now its getting closer I'm thinking about everything, I mean there is always risks to things and I am never normally one to focus on the risks, but over the weekend its been niggling away at me, I'm only human.

Then there's the shallow side of me, when Its over and I look at the scar.

And then there's the pain side of things... Another painful few days, and adjusting to life with a pacemaker, and the hardest one knowing that it won't solve my heart rhythm completely and for the rest of my life I am still going to be on medication, hospital appointments, pacemaker checks and as my cardiologist mentioned at my last appointment maybe even more ablations, I do try my hardest to get on with thing and try and not let it get to me but its so difficult sometimes, when your health effects so much not only your body physically and mentally but also work, family, plans you always feel like you can never fully commit to things because you just never know how your heart will be one day to the next, its like when my boss said to me before I went off  the last time 'your sick level can't continue the way it is' part of me has to hold back the laughter because if you didn't laugh you would end up crying because you simply can't help it its all just so unpredictable, so for everyone who says I don't moan and just get on with things never ask Dougie hahahaaha.

It's just one of those weeks coming up that I wish I could fast forward like 4 weeks time when every thing will have settled by then, and healed and il be used to it all!

On a brighter note, Dougie took me away this weekend to pitlochry which was where we spent our first ever holiday together a few months after we met, I love it up there the little town is just beautiful and the people are so friendly, we visited an old house were we randomly took a picture so we went back to the same place and took one now with Kian, we walked along the lovely dams and the lovely swinging bridge, we visited the enchanted Forrest which was amazing enjoyed some mulled wine and since it was Halloween we dressed Kian up for it.  Except our romantic  and relaxed get away wasn't that at all it was the complete opposite Kian wouldn't sit still at all for more than 5 minutes so we ended up cancelling our dinner table and then because he wouldn't go to sleep with us in the same room we ended up having to grab a chippy and spent our night sitting on the bathroom floor anything to not wake the finally sleeping baby, so it wasn't quite what we had planned but something we will never forget. Having so much to focus on the week before has really helped taking Kian along to Halloween parties picking and carving our pumpkin I do just love Halloween.

Kians first Halloween.

 Today I dropped Kian off at his Nana's were he's staying for the night so Dougie can be with me at the hospital, I really hate saying goodbye to him and he's just learned to wave bye bye so it made it even more emotional seeing him waving at the window, leaving him is the worst of it all I feel like am missing an arm, Dougie had to remind me today its not just me anymore its Kian I also need to think about which for him I just want to be better and ok and be home as quick as possible.

My appetite has been a bit rubbish the last few days I blame the worry about tomorrow without even realising it, so I have found myself having to push myself to eat today since I have to fast and since I don't no when I will be taking I just have to go in at 8o'clock and I know I will be starving come 11.

I hope I don't turn into a big cry baby like the last time with my ablation, I know people must be sick of my face popping up on there news feed but I really just want more people to be aware of ist, ist has basically took the life I did have away and made everyday so difficult, I hope tomorrow will be the start of a beautiful new friendship with me and my pacemaker, which I still haven't thought of a name to name my pacemaker so if anyone would like to help me out feel free to drop me a message.

Thanks you everyone for all the support, and following my blog it does mean so much and knowing I amt alone on this journey really helps, I will keep everyone updated on my new battery operated ticker.

Beautiful Pitlockry and our lock at our favourite spot were we visited on our very first holiday.

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Monday 12 October 2015

Dysautonomia Awareness Month

October is  dysautonomia month, for anyone who doesn't  know what dysautonomia is, its an umbrella term used to describe several conditions that cause a malfunction of the automatic nervous system (ANS) The ANS controls the automatic functions of the body we do not consciously think about such as heart rate, blood pressure, digestion, temperature control and kidney function, people living with several forms of dysautonomia have problems and trouble regulating these systems which causes our bodies to go haywire. Heart rate blood pressure and breathing are all effected. The condition I have is inappropriate sinus tachycardia (ist)

When I was diagnosed with ist after my second failed ablation, my cardiologist explained to me that nobody knows what exactly causes ist, and the main question always seems to be whether ist represents a primary disorder of the sinus node, or whether instead it represents a more general problem of the autonomic nervous system the condition dysautonomia, doctors all have different views on ist some still even believe the condition is related to anxiety, but as my cardiologist explained to me it was something that needed more research done to figure out the actual cause and since there's very little known about it there's no cure at the moment and its all trial and error on managing symptoms with medication, ablation of the sinus node itself can fix ist but its a temperately fix and the heart heals itself and the symptoms will return, or for some like myself end up needing pacemakers.

Suffers with inappropriate sinus tachycardia suffer from a range of symptoms such as breathlessness, fatigue, syncope, pre syncope, dizziness, blurred vision, sweating and blood pressure problems. Ist seems to effect healthy young females more than men. Getting diagnosed with ist is quite difficult and for me took over a year and endless tests such as ecg's, 24 hour tapes tilt table tests, scans, x-rays, checking my adrenaline levels by peeing in a large bottle for a whole day which was not fun and also an electrophysiology study (ep study) were all that was found was how my heart was fast constantly without a reason for it to be.

Everyone with ist is effected differently some people have very little symptoms were as others are so severely effected they have to give up work etc, I am lucky for the reason that even though ist does effect my life a lot I am blessed to have a good cardiologist who has always helped me mange my symptoms and after 3 failed ablations has put me on the list for a pacemaker which won't cure it but will help manage the symptoms and I know throughout the ist community most people aren't as lucky as me and most are just told to get on with it.

 A day in the life of a Ist sufferer…

You wake up around 7ish; you never feel refreshed in the mornings no matter how much sleep you get. It feels like you have been out drinking and partying all night as your head is absolutely pounding. You ’have only slept for about five hours as you have insomnia, and you wake up on many occasions with your heart pounding in your chest and the chest pain you actually could swear your dying. It takes you ages to find the will to get up, over an hour in fact. When you sit up,  that’'s  when your head really starts to pound and the room spins. You open the curtains, the light feels so bright it'’s  painful and you experience the bright flashes because you have terrible light sensitivity and the awful side effects from ivbradine make your eyes hurt more. You stand up to go to the toilet and your heart immediately starts pounding. By the time you’ have got to the toilet you are really out of breath, exhausted and weak; you need to sit down before you do anything else.

Making breakfast is pretty exhausting. Your heart just gets faster so fast in your chest. It'’s probably beating about 150bpm and eating it, well that just makes your heart beat even faster You can try and read or watch tv but you can only manage this for a very short period due to brain fog. Coffee is out the window as that will just increase your heart even more so you either drink water or green tea and swallow your medication.

You dread showers as they make you feel absolutely awful, The shower is cold as heat makes your heart rate increase further which is definitely not what you want and standing in the shower is a task when you feel dizzy. You sigh with relief when the shower is over. They say having Ist is like running a marathon all day every day. But showers feel like you have added an additional marathon on top of the one you were already running. You now have to rest flat out on the sofa to ease the symptoms from the shower.

Drying your hair, well the heat just makes you feel even worse and all the effort of brushing your wet tangled hair, leaves you even more exhausted you could lie down again, getting dressed well that just uses up some more of the little energy you do have left and bending down to put your socks on your freezing cold feet makes you feel faint.

Lunchtime feels much the same as breakfast. But except You’ are  even more tired and weak it feels like you’r forcing yourself to make a sandwich.. You wish you could call your friends, but you are too tired and it would probably cause you to feel worse due to over-exertion.
2pm … You’r wrecked. Time for a sleep. Back to bed you go being in bed is just amazing, It’'s probably the only time your heart calms down a little to even 100bpm if your lucky
4.30pm Your husband gets home from work. It'’s so nice to talk to someone and in my situation help me with Kian feeding him and bathing him.
7pm. You feel so rough now as your symptoms just get worse the more tiered you get You’r dizzy, fatigued feel sick and your heart just wont stop You cook dinner
By 7:30pm you’r too tired to do anything. You want to go to bed there and then but it'’s too early and you would’n't sleep. So you curl up on the sofa and try and watch some telly for me its catching up on hollyoaks or pretty little liars.
Bedtime involves falling into bed exhausted, weak and frustrated feeling like you have achieved very little.
Can you imagine living like this everyday? It'’s probably hard to imagine if your so well. But for people with ist almost everyday is living like your running a marathon, and for me that is how my life has been. You have good days and bad days, bad days when you faint and you can barely get out of bed and good days even though your heart still races you do have energy to do things but its still difficult and I like to tell people I can and I will but it may just take me a little longer.

I really hope this provides a better understanding of dysautomania and ist and you can help me spread awareness by sharing and as I have said before hopefully one day more research will be done on ist.

                                                       Love and Hugs

                                                              Find me also on
                                                               livingwithistuk page


Thursday 1 October 2015

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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Monday 28 September 2015

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.

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


                                                             Love and hugs

                                                      Find me also -
                                                   living withistuk