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.

    
                                                       

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Faint 7 times stand up 8

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

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

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

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


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

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

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




                           

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

 

                                                                      Love and Hugs

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Maybe then You would believe me ?

Hey Everyone

Invisible Illness <3

Hearing over and over again 'you look good' 'you look healthy'
I sometimes freeze and don't no what to say, maybe if you could see the bruises I feel, if they were blue, purple and green. If the burned skin blistered, or maybe even burned your skin too, If the tremors were more violent, if my sore muscles screamed louder and you could hear the cracking of my joints or the pounding in my head 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 ?

At the moment I feel In a constant battle me against my body, my passion and my dreams and what I want to do with my life against what I am physically able to do of all the problems in my life, the hurt pain and frustration there is one thing that bothers me the most and it is ignorance of people, having a condition that affects your life in so many ways is enough to deal with.

The reason for my rant today as recently I have been getting a lot of stares as YES I am registered with a disability something I don't shout at the top of my lungs not only do I suffer from ist that causes me to black out I also struggle with my mobility due to my knees, and the ignorant comments and snobby looks I have been receiving lately. My knees have became a lot worse with being pregnant and can only walk so far and then they start to swell and give way not to mention the pain, but heading to the shops the other day Dougie parked into a disabled bay something I don't normally do when I am feeling ok and not in to much pain, and the comments of
' When did being pregnant become a disability'
I have learned to accept people don't see invisible disabilities but sometimes wish people wouldn't be so narrow minded, my knees get me down more than having my heart issues as things I loved doing so much I have had to give up. Since my operation I have never been able to walk up stairs and have to rely on lifts, going swimming alone which helps my knees cannot be done and need to rely on Dougie as the battle of getting in and out the pool I cant do alone, Going on holiday I always wait to be the last on the plane due to my slow walking and having to go up the plane stairs one at a time, people might ask why I don't go when they call for elderly and children but I never like to be treated different and try and keep all the dignity I have left with my mobility, even learning to drive became a task having to switch to automatic ... with left footed pedals as I am now physically unable to move my right knee from pedals.

We are all human, we can not define normal so accept people for who they are, and remember "treat others how you, yourself would like to be treated".

Even on My hen Party I became a hooter Girl In a knee Brace <3

So all I am trying to say is that something visible shouldn't cause judgement and turn heads in society it should stop. And that an invisible disability shouldn't cause judgement either unless you know the full story. I'm going to leave you with this question. If you were judged, stared at or treated horrible by people because of a disability whether it be physical or not. How would you like it? How would you feel?

Thank you for reading. Please share and lets change the way the society thinks and their ignorance to disabilities.

Love and Hugs Danielle xxxx

 A Note Dougie Left at hospital once after just leaving the car to help me in because I couldn't walk far <3

The Knee Braces I have been in when knee has been Really sore

why is Inappropriate Sinus Tachycardia Judged !

Well this post is a touchy subject for me and makes me angry that so many people with Inappropriate Sinus Tachycardia are judged. Some people will love this subject or hate it but everyone is aloud there own thoughts and views.

All disabilities are criticised and judged by the general public and people can be narrow minded when not all disabilities can be physical and some are invisible which is what Inappropriate Sinus Tachycardia is and people are so quick to judge. When I was on holiday last July I felt my symptoms come on and had to take to lying down on the floor which as I am sure u are aware the looks and stares I got, but not one person bothered to ask if I was ok or in need of any help instead left to lie on the floor and physically had to ask a women to get my husband.  There has been a few times I have been faced with this situation were no one helps or even asks and people have actually crossed the road assuming I am drunk or whatever, and this is the ignorance of our society so next time don't be so quick to judge someone who might not have a physical disability and keep a open mind.

Also with this condition and speaking to others there seems to be even doctors and nurses that are ignorant towards this condition and find it upsetting and frustrating that people are treated this way, people with this condition been told its mental and anxiety making it worse. I have been lucky that I have had a good group of doctors who have never said this to me, but on one occasion I did have a doctor prescribe me medication for anxiety but have to say have had  panic attacks and feeling this way is due to the general public and the fear of collapsing alone with no one helping me, and some doctors should maybe try to put themselves in the shoes of having that fear for a day and feeling helpless and having to rely on members of the public to help.