Tuesday 24 March 2015

My Article about my letter to Inappropriate Sinus Tachycardia was published !

Yesterday my article to my letter to my illness was published ( Inappropriate
Sinus Tachycardia), were I stated what I would say to my Illness, I have always wanted my voice to be heard and have always made it a huge goal to spread awareness as this condition has seen me go to hell and back again so I am so proud that this was published.

Here's the link For my article. ( don't forget to share it )

Recently A few things have happened to me that show that more knowledge is needed about ist, after my gp tried to move my appointment forward but unfortunately this couldn't happen I received a phone call from my doctor to say my cardiologist has suggested I increase my ivabradine but the phone call ended with 'do what you feels best' 

How do you know what best is, when your constantly told your not in any danger, is it best to suffer the fast heart rhythm where you feel like your constantly running everywhere or is best to suffer the side effects of the medication, the exhaustion were you aren't just tiered you could physically lie, go to sleep and never wake up again. Nothing hurts more than a doctor not knowing what's best, for me I know my own body but even knowing it inside and out that there's never a happy medium. 

I find my problems are worse as making it through my pregnancy feeling so good I remember how amazing I did feel and didn't realise how bad I was feeling till that amazing feeling is gone, some days it all gets to much and like yesterday I couldn't face going to physiotherapy with my knee ... Because it never gets better, why cause myself more pain and heartache when I could just avoid it so I cancelled and went for a  walk along the beach with Kian and it was so nice to just feel the sea breeze and get away from everything and anything even just for a few hours.

Some pictures of my lovely walk along the beach.

I also haven't been sleeping very much as every night I am having bad nightmares were I am dreaming of awful things happening to the point I am screaming and panicking so much that I am also waking up Dougie, I don't no if this is a side effect of the medication or maybe I just have to much on my mind, so Dougie took me away to Piperdam which is lovely lodge cabins up passed Dundee, our first little holiday with Kian and it was were I spent my first mothers day, we  had long lies chilled in the lovely hot tub which did make me feel awful and had to go to bed straight after, and nice walks, Scotland is a lovely place to live and it was so nice to get away from busy Edinburgh even just for the weekend.

 Kian Is now 18 weeks old, were has time gone he just amazes me everyday he rolled over last week tries to stand all the time and has now even started trying to sit up by himself , is always so happy and smiley, and just last week it was a full year when I first discovered I was pregnant with him

Hope you Enjoyed reading my article, please get sharing and will be updating after my cardiology appointment next week :)

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Saturday 7 March 2015

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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Tuesday 3 March 2015

Getting a little shine back to my life

When you become ill its so easy to become a different person, for me I lost my sparkle, my happy bright attitude, and slowly as the days turned into many years that bright happy sparkly person I used to be wasn't there anymore, no matter how hard I tried to be that person I couldn't, its so easy to loose sight of the person you used to be I was consumed by anger, jealous and self pity and felt I was pulling everyone down around me.

To get my sparkle back I can't get rid of what's taking it away as I have no escape from my body and despite doing all the rehab with my knee and taking all my medication for my heart and also going through the two heart ablations it never seems to get better, the drugs minimise my symptoms on good days but it doesn't make it better, watching everyone else doing simple things makes me angry and jealous as sometimes for me walking to the end of the street is difficult and exhausting and you spend the rest of the day recovering, but over the past few weeks I feel I am getting some sparkle back in my life.

To start with growing up I had always dyed my hair blonde but after my first collapse and being diagnosed I suddenly stopped, as something so simple like going to the hairdressers became a task and something I had no interest in but the other week I decided to get blonde highlights back in my hair and already felt I was gaining some of my confidence back. I also started taking Kian to baby massage something I would never have done going to a class with people I didn't no as the fear of something happening and being with people who have no clue about my heart, but the anger and sadness got the better of me as I didn't want Kian to miss out just because I'm frightened of the big word if, and managing to sit down on the floor beside Kian was such an achievement as getting up from the floor is so difficult for me but doing it each week its slowly getting easier and the anxiety of getting stuck with my knee and fainting because I have stood up too quick is slowly disappearing.

My lovely blonde Hair and tanned skin these pictures were a few months before my first faint.

Admitting I needed someone to talk to and needing a little help also got some of my sparkle back spending a few days in tears just feeling like its all to much being sick  with a baby I spoke with my health visitor who refereed me to a place for mums who are finding things a little difficult where you are able to go and meet other mums and talk about how you are feeling. Being a mum is the best job in the whole world but it is difficult and having my heart problem makes it even harder feeling unwell I used to just lie down but having Kian its not as simple as that and no matter how sick I feel I can't just lie down to it now, or how carrying Kian with my knee is really difficult and leaving the house takes me ten times longer doing stairs one at a time while carrying Kian, and having to stop every few minutes I do feel my heart racing as the thought of passing out with Kian worry's me so much.

My beautiful baby baby who is now 15 weeks, he is my whole reason for not giving up his smile just makes each day worth living, no day can be that bad when you wake up to this face. I hate having to wake Kian to go to all my early appointments and after a 12 hour sleep he still yawns, he hates it all as much as me.

I also went to my first physio appointment since having Kian and even though my surgery was 4 years ago my knee is still no better, and hearing the words I am still miles away from were I should be was soul destroying after 4 years of constant rehab to hear that, but looking at what I have achieved it is slowly  getting better a few years ago I was unable to walk without crutches and a full leg brace now I might not be able to walk properly and still have my limp but I can walk and leaning on Kians buggy makes it even easier.

I turned 24 on Saturday and I spent my birthday with Dougie and enjoyed a meal and a few drinks with friends  and felt I got some of my shine back, its so easy to become a shadow of the person you 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.

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