I have pushed myself so hard to write this today, but I am determined to document how bad things are at the moment and of course have a good old moan with you guys who am sure most of you can relate to how shit things can be so fancy joining in my moan, grab a large cuppa because I think i may not stop once I start.
Ok as I hate to admit it and rarely do If I'm being honest I have been feeling much worse these passed few weeks, and do you want me to be even more honest ? I naively thought that things would be better and I wouldn't be letting my heart rule my life, wither it be managing it all better or in the hope it just disappeared as much as I wish it would. I have spent the whole week pushing myself physically and mentally to ignore it all and get on with it as much as I can, trying not to moan, trying to just lead a normal life, trying to avoid the doctors basically counting down the days till I see my cardiologist, after being at the hospital last week and not feeling any further forward the same confused look, yep clearly the on call cardiologist had no clue whats so ever to explain the way I was feeling am sure many can relate to that same confused look without actually saying I have no clue it's easier to just pack you on your way with a 24 hour tape in the hope they don't come across you again, things just got a whole lot worse this week getting out of bed has been a challenge I'm completely fine lying down and as soon as I get up am wiped out my heart racing the chest pain and the awful symptoms that come along with it all, exhausted isn't even the word for it now, walking to the shops the other day I said to Dougie I could physically lie in the field and go to sleep and that's what I have spent this week doing.. maybe not lying in the field ha ha as much as I want to, but spending my week lying in bed feeling completely sorry for myself and the worst one not knowing what's really going on ,phoning the hospital appointment line on Friday morning to check the time of my appointment, thinking my cardiologist appointment was next week I was informed by a rude snotty lady on the phone who stated I had in fact missed my appointment and it was yesterday morning were I was told my next appointment is booked for May, I cant remember exactly what I said I was shocked its not like me to miss and forget urgent appointments but something along the lines of I cant wait till May were she told me I had missed numerous appointments there was nothing they could do... I have never in my life missed an appointment so have no clue were she pulled that one from, but feeling so bad I would forget my own head if it wasn't screwed on, I swear when I feel this way I forget what I said to Dougie 5 minutes ago, hanging up the phone I decided to phone his own secretory, were I wasn't any further forward with an appointment before May he's simply to busy , and it was my own fault for missing the appointment, if anything bugs me is rude Secretaries and doctor receptionists. When did they get a medical degree ? or even know your medical history ? I sometimes think you have to be ignorant and rude to get the job as one, I mean we all understand our doctors are busy and I never ever ask to see him in such a manner but even some advice would be nice instead of meeting doctors who look at you like u have huge horns on your head, as I came off the phone I had to fight back the tears thinking, lets count down again a whole 12 weeks which feels like a lifetime when you feel as bad as you do soul destroying isn't it ? I have no quality of life at the moment, Going back to work just seems further away because of how bad things have got, Dougie had to inform me that basically I had to take a look were being nice, patient and getting on with things got me ?absolutely no where, but I didn't need someone reminding me of this and also the long talk of, if if I had actually admitted how bad I was feeling instead of saying I feel fine, then people would of helped out more and he's completely right but I hate feeling like I'm moaning or going on about how rubbish I do feel so I never do admit it. And the worst part of it all my doctor was going to write in January to get me seen sooner and it was me stupidly saying it's fine I can deal with it till febuary.
Waking up on Saturday Dougie decided to phone nhs 24 were he lied on the phone, bad I know but he knew if he said everything that was going on they would probably send me to a&e which is whats happened in the passed or the ambulance rolls up because of my past heart history which I just don't want at all and don't feel I need it I really hate going to hospital and again hate the confused looks and the way they make you feel like your wasting there time because they have no clue and many haven't even heard of ist , they do absolute nothing that you couldn't do yourself at home and having Kian well I can picture him racing up and down a&e as he now runs everywhere at any chance he gets, bribing him, as bad as it sounds with crisps and food just to get him to behave .. And if you try and get him to do anything he doesn't want to which would probably be staying in the one place he would throw a major paddy as I like to call it or temper tantrum .. So I would also look like the mum who can't control her son and let him get his own way which isn't true but sometimes it's not worth the fighting of the huge blow out screaming and throwing himself to the floor were half the time I do just give in to him because its exhausting anyone with toddlers will know how stubborn they can be the face of a baby but the temper of a teenager Giving an appointment at the out of hours explaining everything he looked at my wound which I knew myself I have a lovely keloid scar .. Sexy another thing to add to how rubbish things really are, not just having a scar and a pacemaker along with a dodgy ticker, but a raised horrible red keloid scar, taking my temperature which was high he started asking me is there anything else to explain the temperature ? Feeling frustrated no I haven't had a bug or even a cold just a very sore arm and the pacemaker area hurts like hell as well as feeling faint and dizzy, he sat confused saying he expected a young girl to walk in with a tiny cut but didn't expect this which was probably Dougie's fault for lying making out it was just a tiny thing, he decided the easiest thing would be to give me antibiotics and to see my GP Monday, but was it the right thing to do, as I sat there all that was going through my head was please don't send me to A&E, please just prescribe me antibiotics, because again you have no clue like everyone else, and it's all a guessing game, I mean really it's frustrating being pushed from pillar to post with no one having a clue what's going on, so the two theories are, I do have an infection or my pacemaker position is not great and maybe on a nerve, and is it my blood pressure dropping making me feel dizzy or the pacemaker not pacing my heart how it should ? so many questions with no answers because he just didn't know.
I spent the rest of yesterday lying in bed feeling floored, Dougie turning up the heating for Kian after his bath that just made me feel even worse, if I didn't feel sick before I definitely did now not to mention feeling a total failure lying in bed while poor Dougie done everything again, Do you ever feel like everyone is doing everything to help but actually they do things that's least helpful, or maybe its to do with feeling so rubbish, but being told you need to get fit, loose weight just get your act together shake it off all of which have been said to me the last few days from family members is just upsetting ... actually I take that back ignorant comments no longer offend you, you brush it off because you would love nothing more to get your act together but your body just doesn't allow it the fact that people cant see how much your suffering just by looking means its inevitable as sad as it is, but if they were to look closer then maybe they would see how much you grieve for the life you did have and how much you are suffering.
When your frustrated with me because of the things I can't do, just imagine how frustrated I must be because i'm not able.....
Today I found myself lying again saying to Dougie I feel fine so he would go to the football which he had tickets for knowing if I admit am not feeling great he wouldn't go it's easier just to lie and say it's all fine which is something I have found I'm very good at which am sure every ist sufferer could all win an oscar for, putting a fake smile on and just getting on with it, I would just feel even worse if he didn't go as dougie deserves a life too, not just looking and worrying about me so today kian's at his nanas while I have laid around doing nothing just trying my hardest to shake this horrible feeling and hopefully get somewhere tomorrow or wither I will find myself again just feeling frustrated and fed up and being no further forward, It all just gets to much sometimes the emotional pain physically hurts being strong just feels unachievable knowing there's never going to be a happy ending is heart wrenching , longing and grieving for the life you used to have, anger sadness and self pity take hold ,a dark cloud hanging over you, and the weight of the world on your shoulders not known what the future holds, yesterday l allowed myself to feel this way and I will pick myself back up tomorrow, but for now I'm allowing myself to feel defeated 💔
I hate filling up my blog feed with so much negativity all though I feel like my heart is really kicking me down at the moment, I WILL find a way to achieve the little things in life. How do you all deal with the bad days feeling like your getting no were and overcome hurtles that appear in your life ?
Love and hugs
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Living with Ist uk
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