Forget Drugs face the Chilli Pepper patch,( How i ended up feeling on fire)

Whenever I told anyone, I'm getting Chilli Pepper patches  to  help my nerve pain you can imagine the weird looks I was met with, I mean Chilli Pepper to help nerve pain. ? but yep you heard it right, lyrically chilli pepper, it wasn't a case of standing in the hospital while the doctor crushed up chilli from the local supermarket, It came prepared in a small patch (a very hot patch)

Back in March when my infected pacemaker was removed I've suffered from pain, my cardiologist refered me to see a pain specialist and spoke with a plastic surgeon who both diagnosed the pain I was experiencing as nerve damage, Since then I've been placed on a variety of medication and painkillers to help combat the pain, the huge problem was these drugs are ok to take now, but being young and wanting more children in the future, that kind of threw a spanner in the works. All the medication I'm on isn't safe to take during pregnancy, I also didn't want to be on painkillers long term.

A few months back I happened to stumble upon the program 'the doctor who gave up drugs' were the doctor in the program Chris van Tulleken  stopped patients from talking painkillers and instead tried other methods, part of me felt this huge weight of worry, I was scared that was the route the pain specialist was going to go down, scared of the unknowing, scared of suffering pain and nobody helping me, I could see the pain in the girls eyes in the program knowing exactly how she feels, knowing that must be torture.

As I swallow Tramadol, Macklemore's new song 'Drug dealer' plays in my head  I sing this song at the top of my lungs as I'm hanging up the washing, it's one of they songs that its tune struck a chord but suddenly a horrible feeling hits my stomach , because as much as I like this song he paints a picture of drug abusers but blurs out people like me who have chronic pain people like me who don't want to take pain medication but have no choice, the pains to much,  one of the tablets I'm on Gabapentin isn't just one tablet a day it's split up into taking 3 a day and the side effects are nasty, one day as I woke up, for a split second It felt like I was falling, as though the bed I was lying on had disappeared from underneath me or another night, As I woke Dougie in the middle of the night, I told him something was wrong with my body, because the numbness and tingling was horrible, the left side of my body was completely numb, its like my arm and leg weren't attached,  the tingling hits me as I sit in the car as I try everything to bring the feeling back to my body, but without them I cannot function, the pain hits me hard, it  takes my breath away and I end up crying real snottery tears. When I first met the pain specialist he told me sometimes nerve pain gets better as time goes on,but most of the time it didn't and it was most likely I was going to have this pain for the rest of my life, that was hard to swallow, it took a while for it sink in, he did go down the route I thought he might like Chris the doctor in the program, but instead he mentioned  Chilli pepper patches and figured it was worth a try, I didn't have anything to loose, he warned me it was painful and if it didn't work we would cross that path when it came to it, I could still take tablets if need be until the time comes when I want another baby.

Now I understand your probably reading this and thinking how can Chilli Pepper get rid of nerve pain So I thought I would explain it all here.

The patches contain the active ingredient Capsaicin which is the natural substance found in red chili peppers which gives them their heat. Capsaicin works by desensitising the sensory receptors found at the end of nerves. When activated by painful stimuli they send nerve signals to the spinal cord and brain that results in the perception of pain, but when capsacin binds to these pain receptors it initially causes a painful burning sensation, but with continued use of capsaicin the pain receptors become overloaded and eventually they desensitise which makes them less responsive to painful stimulation this is what relieves the nerve pain. (http://www.netdoctor.co.uk/medicines/aches-and-pains/a8755/qutenza-patches-capsaicin/)

So I had my first patch placed last Thursday, the patch was placed by a nurse and was to be left in place for an hour, an hours nothing right so I kept telling myself , but it was the longest hour of my life, when she asked if I wanted a cuppa  or would I like to go for a wander and come back in an hour,(sooner if I feel the pains to much) which  straight away I didn't like the sound of but I figured how sore and hot could one patch be, I mean one small patch would be nothing right, a walk in the park compared to 3 ablations, when it was first placed it didn't feel like anything. Dougie knowing me better than I know myself said we will go for a walk,  which I'm so glad we did,slowly I felt the skin under the patch get hotter and hotter until it was burning hot, red and itchy, We walked round the charity shops beside the hospital which took my mind off how much it felt like my skin was on fire, as Dougie pointed out nice dresses, something he never does but I think my facial expression said it all as I was stupidly waving my jacket like a fan over my chest trying to cool it with the cold air.  I think if I had sat drinking tea it would of been a completely different story, this is the reason I drag Dougie to appointments like this for that purpose  because without him, I would of been crying even more snottery tears and the patch wouldn't have lasted half an hour let alone an hour  As we returned back to the hospital the nurse looked at me and said how was it ? your still smiling anyway so it can't be that bad there's still another 10 Min's to go, 10 minutes which I sat on the end of the bed biting my tongue for as she explained to Dougie what the patch does.

Its still early days to know if they've been successful or not at helping my nerve pain it takes 2 weeks to feel the full effects but fingers and toes crossed it works, the pain's still there although not as bad and the stingy pain that random hits hasn't so  its defiantly doing something, if they do work I will have to brave it all again in 12 weeks. It's amazing that there's so much out there that can help pain not just drugs that you don't hear or even know about, I mean I hadn't ever heard of chilli patches.

If you have nerve pain don't let my experience of the pain put you off, its like having really bad sunburn for 2 days and then it disappears, as much as It hurt I'm definitely going to give it another shot, so if your like  me and have nerve damage and pain, ask about  chilli pepper patches there worth a go, a pain specialist who specialises in  nerve pain is the person to get in touch with who can assess and guide you.




                                                           

                                                                    
                                                                   Find me also
          
                                                                     Facebook Page
                                                                     Instagram
                                                                     Facebook

A small moment to remember your so much more

Mum guilt we all feel it, it seems to come along brutally as part of motherhood, a phrase that before I had my little boy I would roll my eyes at but it's very much real and next to impossible to get rid of.

Becoming a mum  life becomes a huge jigsaw puzzle trying to slot the pieces back together, trying to place everything back exactly were it was but with a child in tow and when you have a chronic condition that throws obstacles and difficulties  from every angle and makes that puzzle even harder. Since I had my little boy Kian a huge piece that I had wanted to place for so long was going back to work.


Now I realise how selfish that sounds, I would rather work than be with him, but here's the thing, kian's the most important thing in my life but that didn't mean  he had to be the only important thing.


I had so many opportunities to say screw it, my hearts knackered, life's so unfair,every opportunity to give up, my health set me back constantly all that ever came out of trying to work again was that white piece of paper ticked unfit for work and in the passed going back to work didn't last long because my health would just go straight downhill and it became harder each time to go back, the anxiety of another setback became unbearable , but the tears that flowed every time I left the doctors were painful because the truth is work was a huge part of my life before I got sick and an even bigger part of my life before I became a mum, I was also stuck with, how could I set a good example to Kian if I let my problems win, the only example it sets instead is how easy it is to give up, things that are important aren't worth fighting for, and working is such an important factor to me.

Going back to work when Kian was 18 months old felt like the last piece, after months of setbacks , I finally felt like my life was complete again, I'm far from supernanny but I had work and looking after a toddler going smoothly and my health being the best its ever been since my heart problems started my jigsaw puzzle was complete.....Except being selfish wasn't anywhere to be seen in that complete jigsaw puzzle.



The thing is returning back to work only made me even more less selfish,  Your forced to work have the house tidy, dinner on the table putting everyone and everything before yourself, you ask how everyone else's day has been but nobody ever bothers to ask how your crap day has went.
Even when your unwell as a mum, what does mum do when she's sick, or should I say what doesn't she do ? of course she doesn't put herself first, being a mum its like your automatically programed not to be selfish all the time.



The sad thing is, I realised I had lost my inner self, I was too busy focusing on getting my health back. so I could work, to busy trying to balance motherhood and work To busy trying to do the mum role perfectly that I  got so lost with trying to be a good mum that I wasn't a good wife or friend I wasn't a good me.

When my husband said to me one Friday night  as I reached for the tea cup instead of the wine glass that I was so boring, I actually felt this huge weight of sadness wash over me, I felt sad and guilty that I had lost the fun bubbly me, the person who was the first and  last to leave a party now turned down every invite to instead sit with knitting needles and a cuppa, but the thing was deep down I knew she was still there, underneath the yogurt stained T-Shirt, the weeks unwashed hair pinned back, the handbag full of dummies and toy cars she was, the same girl who still dances stupidly around the living room to Steps still done that at most opportunities.



All mums do feel guilt but having an illness that guilt is amplified ten times more and being a working mum that guilt is amplified hundred times more so when you have an illness and go to work that guilt eats you alive.

You feel guilty for being a shouty mum, guilty for being unwell, , guilty for hiding your head in the fridge to eat, guilty for wishing you could go back to work and have a hot cuppa and some adult chat, but the thing is now I feel guilty that I'm not a stay at home mum, you always find something no matter how big or small it is to feel guilty about.

'I need a break', were the words I held back for so long, I feared being judged. Working mums get a break, we get the best of both worlds right? , but that couldn't be more further from the truth.



As a working mum, it's no fun leaving them for most of the day, its no fun coming home and seeing them peacefully asleep knowing you missed a whole day of their precious little life's, others hearing words and seeing precious milestones and moments. It's also no fun the tears you shed  when you walk out the door, you spent most of your day clock watching, as the saying goes a watched kettle never boils, that's how your day is, But here's the thing going to work isn't a personal break, your not going to work for some time out, and when you finish you don't actually clock off, you've just finished one thing that's expected of you, and coming home you've used ever single ounce of energy that's left  that you become that shouty tiered mum who's no fun and then you feel guilty for making work be an important part in your life.

When I say those words 'I need a break' it didn't mean I wanted to put my feet up, or go out for a drink, It didn't mean I wanted to kick back with Netflix and the Game of Thrones box set,  it didn't mean I wanted to step back from my responsibility's , it means I wanted to take a moment to feel human again, In days and weeks that are all mould  into one, putting everything before yourself you just want a moment to be selfish, when your burning the candle at all ends, trying to do everything ,you just become exhausted from trying to do everything right except you feel like your doing none of the jobs perfectly.



When I do 'get a break' I don't use it for fun, I don't use it to even hit the gym or go shopping, I don't need a break to unwind, have a party being me on my own instead I find myself lying in a quiet room or I go for a bath but the thing is I sit with my own thoughts were I switch off for a few seconds, without something being expected or wanted from me.



I do the one thing that I need to do, to work and keep up with the never ending needs of  my beautiful Kian, two important things in my life, being a stay at home mum would be easier, I wouldn't risk setbacks, I wouldn't worry constantly if my hearts going to play up, I wouldn't live in fear of having sick days and I wouldn't have so much guilt for leaving him to go to work but that would be giving up a huge part of me that makes me who I am, I worked before being a mum and I worked long before I got sick and I'm more than just a mum,  my breaks allow me to recharge those battery's that are on energy saving mode a lot because of my heart.

I put absolutely all the fuel  I have stored in the tank  into being a good mum and working from the minute I opened my eyes in the morning till I close them at night there isn't a single second I'm alone with my own thoughts, Where I'm not been needed and were demands are expected of me, not at work, in the shower, or even in the toilet.

When I say 'I need a break' it's because sometimes you just need a moment to be yourself, to remember who you are, a moment to stop and catch a breath to make a choice for yourself, we need a moment to feel like we still exist as a person, who doesn't just go by the name mum. Because you can't love others when you don't love yourself and to love yourself you sometimes just need a moment to remember who you are.


                                                               

                                                                     Find me also
                                                                      Instagram
                                                                    livingwithistuk
                                                                      Facebook

The reality of living with scars, Bio-oils #scarsuncovered campaign

Throwing on my bikini the image that stared back at me from the tall mirror was something I had tried to avoid daily,  In fact since the 3rd of November I had succeeded pretty well. I avoided it in every way possible, by covering up with clothes, avoiding mirrors but now I was confronted by it, all I could see was hate, I hated the three ugly raised scars across my chest, instead of lying by the pool in Italy wearing a bikini  I covered up, I was to afraid and embarrassed anyone would notice or comment on my scars.

Not only do I feel really uncomfortable noticing the outline of the pacemaker and the scars, touching them is out of the question not just because physically  they look ugly, mentally it's painful to look at them, it brings back all the horrible memories of every hard painful moment,every life changing decision.

'the hardest part is knowing the scars didn't mean I was fixed they were a small mark but in my eyes a large mark to help me lead a normal life'

Why should I feel embarrassed or ashamed of them and in reality I shouldn't there a huge part of me, each one tells a unique story that represents what I indured  and overcome, that without them I wouldn't be were I am today, but when I did finally pluck the courage to show them off I was met with cruel hurtful comments that really hit my self esteem big time.

'Having someone refer to your chest as horrible and a mess it's hard to respond skilfully to that comment when all your eyes do see is a mess and your mind just feels hate'

That scar causes physical and emotional pain everyday for me and I hate to admit this but when it was confirmed I had nerve damage and the pain specialist prescribed me lidocaine patches to help numb the area been giving a huge patch to cover the scars up by a doctor was ideal because it was like I did have an excuse to keep them hidden. It was easy in winter because the cold was an excuse  but when the hot weather started to arrive everyone close to me would question why I wont  take my jacket off  and of course I didn't want to admit to hide my scars, that would lead to so many questions that mentally I felt I couldn't bring myself to answer, I didn't have to lie anymore a doctor had prescribed me a patch which physically eased the pain, which meant mentally I didn't have to look at them, I didn't have to fear others seeing them.


Even though a few weeks back I witnessed that there are some cruel horrible people out there, there are also kind ones too and this week I was touched with a letter from the wonderful ladies at Pegasus  not only did they send me bottles of bio oil and who doesn't love bio oil right ? I practically bathed in the stuff when I was pregnant because yes I  feared stretch marks but I had a beautiful baby boy they marks brought me so much joy and happiness so it was like they were irelvent , I could embrace them. The letter enclosed brought me so much comfort because for once I didn't feel alone anymore, there are other woman out there who feel exactly like I do, it was completely normal to feel that hiding they scars under clothes meant they were out of sight out of mind and shockingly that number is more than half the woman out there.

Bio-oil have started the mission #scarsuncovered as they believe nobody should be made to feel they have to cover up, accepting a scar is an important part of coming to terms with what happened in order to move on. Which is why I am showing off my scars,  if I can do anyone can  imperfection is individuality after all in a crazy sort of way they scars do actually make me smile because the hurt is over for now.

Your a solider your scars are your medals so polish them off with bio-oil, and I have 3 free bottles up for grabs so there's no excuses all you have to do is watch the video below and comment below with the answer to this question,

What does Laura do at the end of the video ?

But there's a catch because I would love to see your pictures too so don't forget to upload and #scarsuncovered and join me and many other beautiful ladies on bio-oils amazing campaign, winner will be choosing at random on the 13/8/16

Products sent to me for the purpose of this post & giveaway by the lovely people at Pegasus

 

                                                                    

                                                               Find me also

                                                                 facebook

                                                               livingwithistuk

                                                                   Instagram

When nobody gets it

Last  week had been a really good week for me, when I say good I actually mean bloody brilliant, I was managing simple things that a few weeks ago I struggled to do,  tidying the house, hanging out the washing taking a walk along the beach with Kian to watch the aeroplanes landing, typical Scottish weather it didn't go to plan , my perfect picture for Instagram of sun sea and my little mini Dougie, was a huge fail it started off sunny and then snowing all at the same time , hiding in the cafe with a well deserved cuppa and a piece of Nutella cake, I finally felt  like I was getting my sparkle back no more negative grumpy Debbie downer Danielle.  I finally felt like I had found my positive pants and I was wearing them proud , going to the pacemaker clinic and finally feeling like everything was starting to turn from negative to positive no more bad news, yep my heart appeared to have got even more lazy and my heart function had decreased and I was relying on this little battery, ticking over more, but I felt blessed, I felt the best I had felt in a long time,I finally felt that one step closer to making it back to work, one step closer to achieving things I felt were impossible a few months back closer to just being like the old me ,and having that glimpse of feeling well and healthy was just amazing, I clearly had forgetting what being well felt like because it had been so long.

Getting up on Monday morning I woke up up with the worst cold, now the colds just the cold right ? Everyone gets it take all the cold remedies sweat it out in a bath, lie in bed drinking fluids etc but when your  heart is sensitive to nearly every single cold remedy out there it's just not as simple. Do u see were am going with this? If u have a shitty heart like me that's sensitive to nearly anything that makes your heart work faster including getting a bug, a virus an infection even just 'that cold' then you will know exactly what am about to say because you will know exactly what it's like, it's not "just the cold " when your heart doesn't work properly your heart and health take a huge hit.

I tried to ignore it I really did, I tried to not complain and moan about having the cold because let's get real it is just the cold and as much as I felt like I was dying I wasn't and it was "just the cold", carrying on my day as normal and with a hyper toddler who also had the full blown cold and was just as grumpy as me because he obviously felt just as shit as I did.

Oh god getting on with 'just the cold'  was hard, but thankfully kian you were amazing and had a 3 hour nap on Monday , I really thank you for this,giving mum some well deserved time to lie and sulk on the sofa with a hot water bottle and paracetamol  before we took a walk to the shops to get things for dinner.

Now if you've heard of the spoon theory by Christine Miserandino, Using spoons and having none left  not going to bore everyone to death with the whole spoonie theory but basically ,  I had been trying to be superwoman all week  getting on with it all, not lying down to it refusing to admit how bad I felt simply telling everyone I had 'a cold'  but by Thursday I was wiped out and feeling even worse than I had been, I had clearly exhausted and used all my spoons up and didn't have a spare spoon left,  Maybe I should of used my spoons more wisely and not pushed and got on with it like normal people do because I guess as much as I would love to just get a cold and get over it like everyone else does it's not as simple when you have a rubbish immune system and your heart doesn't function how it should, and that cold that I had not been  complaining about, well Saturday morning resulted in a trip to the out of hours because 'that cold' was pleurisy and my heart had started to struggle, the little horse had come out to play and galloped away making me sufferer even more than I had been.

But the frustrating part of it all I spent the whole week trying to explain to family and friends yes it's "just the cold," but the cold makes my already rubbish heart ten times worse, were none of them seemed to get it," just get on with it, it's just the cold,"or a favourite "stop being a drama queen  " now maybe I should of said to people how bad things actually were, but I don't because I rarely admit how bad things are poor Dougie did try to understand and he seen how hard it all was for me, as each day passed I didn't get better and couldn't just get on with it  like everyone else does as he came home on Thursday, he knew I now needed my bed, as much as he laughs and calls me a drama queen he sees how much it effects my heart he knows me better than I know myself and what had been "just a cold" I was now  feeling unwell with my heart. but I guess it is hard to fully understand  when you haven't been there and don't no what that  is like, being completely wiped out and unable to leave bed because your heart is working overtime so much it leaves you feeling even more unwell than you already did.

Again it created that  whole barrier of you look fine the whole invisible illness striking because you can't physically see the pain or how unwell I felt or how my damaged heart is taking a huge hit.

It made me realise I can try to ignore it not be so negative think of it like everyone else it's "just the cold," and the cruel words rephrase that ignorant words 'just get on with it' , I had been doing exactly that the chest pain and breathless I had struggled with the whole week I had ignored  it all thinking it's just my bad heart having a bad week, I had cancelled plans let friends down I did just carry on at my own slow pace, I didn't say to anyone moan or complain because the sad truth is like Dougie as much as everyone cares and  wants to help there's nothing anyone can do or say to stop my heart going haywire when I catch colds bugs and this time pleurisy  Whilst they do care telling them doesn't make them get it or understand.

Sometimes its better to keep silent than to tell others what you feel because it hurts badly when you come to know that they can hear but can not understand

You can't fully understand until you've been there yourself,
So the next time I say 'I just have a cold' don't question me don't tell me to get on with it I'm already doing exactly that ,just that I'm  not sharing and moaning about how bad things actually are because you wouldn't get it or understand what that is like and I know that must be hard.

                                                           Love and Hugs

                                                   
                                                           

                                                                   Find me also-
                                                                    Facebook   
                                                                   livingwithistuk
                                                                     Instagram
                                                                 

Its ok to be a big cry baby

 if the shooting pains in my chest were little sparks of light and the dull aching was a bright red glow. If you could see the fog swirling around my brain. If you took my hand or touched my shoulder and you could feel how heavy the weight is, if the sadness made me waste away and the fatigue swallowed me up... and I never woke up.
Maybe then you would believe me, wouldn't you ?      

 I found myself again in the same situation only a week later, sobbing and crying behind a curtain in my local accident and emergency, the frustrating of nobody knowing what was going on, nobody being able to tell me why I was still in pain, or why the fluid was still in my chest, it had been drained yet 7 days later it was back, as I left through the doors of the busy waiting room, I had just got up and left from the trolley I had been lying on in tears, I had simply had enough, you become tiered of not knowing what's going on with your body, the doctor's voice echoed as he tried to tell me I was leaving without painkillers, but I didn't want painkillers my whole body felt numb.

As I sobbed in the car on the way home the tune blasting out from the radio from one of my favorite songs,

                                                                   Where there is desire
                                                                  There is gonna be a flame  
                                                               Someone's bound to get burned
                                                                But just because it burns
                                                             Doesn't mean you're gonna die
                                                       You've gotta get up and try, and try, and try


They described exactly how I felt I knew deep down I knew I had to get up and try but inside I was emotional fed up and exhausted, I felt at breaking point.

Getting home things only got worse later that night I passed out in the hall, before hand me and Dougie had even joked as I kept saying maybe I should just pee the bed I was bursting but I knew getting up I would black out the way I was feeling, the dizziness ears ringing heart racing every time I stood up I would throw myself back into bed And I hate to even share this but poor Dougie was even looking for anything that I could use for me to pee in to save me getting up out of bed and greeted me with my lovely new vase maybe I should of just peed in the vase classy,I know but if you have this condition and been in this situation you will know exactly were I am coming from, but instead I really tried to get up with Dougie's help saying if I felt I was going to go I would just quickly lie on the floor but I failed miserably didn't make the toilet or the floor well I made the floor but by hitting it without trying. When the ambulance arrived I found myself again crying and this time refusing to go to the hospital something I have never done in my life, I just couldn't do it anymore nobody could give me answers so mentally it was like there was no point to anything, they decided to call a doctor out to the house.

Half an hour or so later I was greeted at the side of my bed by what was one of the nicest doctors, the first thing she asked me was why  I refused to go to hospital were again I just started crying and couldn't stop, she felt the lump of fluid and commented saying no wonder I was in pain the lump was stuck to my rib cage, giving me tablets to help me sleep, she was now on the case to get me sorted but at this time of night she simply couldn't because it needed the one person who knew my heart inside and out.

I was admitted the next day to the cardiac ward,  sat staring at a bunch of old ladies again, who actually thought I was a visitor at first, because your far to young to have heart problems I was so grateful to be sharing a room with they 4 lovely ladies they chatted away and made the whole stay that little bit nicer especially the way I was feeling being an emotional wreck.

My pacemaker was checked to make sure it wasn't failing and that had been the reason for my collapse, and a heart scan that thankfully were all fine so he decided to get a second opinion, as not only did he owe that to me but to himself as well, because he just didn't know what was going on, my results showed lots of inflammation and white blood cells but nothing stood out as a problem or why this fluid kept coming back, so the next day I was met with another cardiologist who specializes in pacemaker infections at first he spoke about opening it back up again, but  that brought more risks of messing with it all again and putting me at risk of infecting my new pacemaker so as much as it was a pain, really a pain in my rib cage, we went down the route of leaving it to see what would happen and hopefully eventually my body will break it down with antibiotics and of course my heart racing is completely normal for me.

    
                                                       

                                                                     Love and hugs
                                                                 
                                                       

                                                                   Find me also-
                                                                    Instagram
                                                                 Livingwithistuk
                                                                    Facebook

More than your 9:20 Appointment

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

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

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

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

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

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

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

                                                         
                                                           

                                                                   
                                                                   Find me also on
                                                                     livingwithistuk
                                                                    Facebook
                                                                   Instagram

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.

                                                           Love and hugs

                                                              Find me also on

                                                                  

                                                               facebook

                                                               Instagram

                                                                twitter

                                                               livingwithistuk

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

Find me also

Facebook

instagram

Twitter

livingwithistuk