Thursday 30 April 2015

Antibiotics,infection and more sadness

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

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

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

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

My happy smiley baby boy Kian. <3

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

21 weeks old, now weighs 14lb 11oz

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

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

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

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

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Tuesday 7 April 2015

Put on the list for Ep study & Ablation Number 3

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

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

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

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

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

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

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

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