Thursday, 22 June 2017
I write this post from hospital, I have been in and out since my last post Firstly thank you so much for all the beautiful, supportive and caring messages I've received on social media I've been feeling sorry for myself and my moods went to pot but your words really brightened my day.
So after weeks of struggling with retention and a bladder infection I was admitted into hospital for iv antibiotics and fluids to kick the butt of bacteria lurking inside my body. I don't think I have ever felt so unwell, Friday night I was abit off but I put it down to not feeling too well generally and being really exhausted, well by Saturday morning I woke up sweating buckets. The district nurse called a doctor out who both suspected I had an infection, I was giving oral antibiotics but by Sunday morning I was shaking, unable to keep my eyes open and also being violently sick Dougie took one look at me and phoned out of hours who told us to head straight to hospital.
So I'm still here receiving two different types of antibiotics intravenously to try and knock the infection down to a level were it doesn't need such aggressive treatment, I'm still in a lot of pain and feeling thoroughly exhausted.
My bloods are showing the levels are dropping which is good, my temperatures slowly coming down along with my heart rate, although I have to admit I'm concerned that I'm still feeling so rubbish despite knowing things are improving but after speaking with the doctor he's told me that's normal and that I won't feel better for a while because of how severe the infection was.
I have a catheter back in as my bladder went back into acute retention 2 weeks ago, I've cried so many tears over this happening again because I'm gutted it's something I hoped was just a one off but it's not, in fact it's happened twice I'm waiting on an appointment at the clinic to trial without the catheter again but having an infection means it's been delayed because I'm more likely to fail whilst the Infections on going, If the trials not successful then the next step is more tests and also being taught to intermittently self catheterise myself.
I love when you think you've had the most embarrassing tests known to man, your then told you have to pee out fluid whilst a team of people take images and measure the strength of your bladder the joys Of having bladder problems though !
But anyway I have something else I want to open up about, I don't even know we're to start with it all but I feel now's a good time.
For a while my body's been doing things out with my control, things I can't really explain. A condition that's been mentioned a lot which is becoming poison to my ears is multiple sclerosis (Ms) I first heard this back in December from a neurologist after a locum gp noticed I had weakness, along with paralysis and a few weeks later a routine eye test detected I've lost vision in my right eye but he couldn't be 100 percent certain until they done an MRI scan. Having a pacemaker means I can't have one, my leads are compatible but my box isn't. After a long discussion and alot of communication between my cardiologist and the neurologist my cardiologist put the cards on the table that he was happy to change the box, from his point of view it's a simple box change but for me it's not there's the risks, another Scar, the recovery afterwards but also because I've had an infection in the past means my chances of catching another one are higher so with all this considered the neurologist decided to keep me under his care but to leave things as they were and if things changed then we would go down this route But Yesterday this came up again as the urologist wants to send me for one too He feels more tests on my bladder probably aren't going to give answers which is why none are being done at the moment I've been told the thing with ms it can cause relapses and my bladder going into retention could be like a relapse as all the tests I've had so far show my bladders healthy that perhaps my bladders not the problem it's my brain not giving the correct signals to empty.
Where do I go from here ?
and I honestly don't know, I'm stuck with the question of having to go through more surgery to change the box so I can have the scan and hopefully rule out ms or leave it and see how things go ? something Ive spoken about with Dougie is at what point do you decide now's the right time ? Is there a right time ? At what stage do you leave it till something else happens, something that's another sign of ms but at the same time if it's ms it's not like there's a cure, getting a diagnose isn't going to change or stop everything that's happening to my body, do I wait 10 years till my box needs changed anyway ? I so wanted to feel relieved when they found something wrong with my bladder, because that meant there's still that possibility it's not ms but each time they find nothing I loose that hope.
People keep telling me to stay positive because there could be a million other reasons to explain why all this is happening and this is true but until it's ruled out it's a shadow hanging over me. I am positive in that I'm surrounded by people I love, who are ready to help me fight when I get weak and tiered they help me stay strong, just because I feel fear doesn't mean I'm not brave, just because I can see the negative doesn't mean I'm not positive, I still choose to see the positives even though I'm surrounded by negatives some days though it's just a little bit harder to find that tiny bit of glimmer... but I will.
Poor Dougie is dealing with Kian, work and home life as well as my emotional breakdowns I'm so upset about ruining Father's Day and being a burden to him that I'm actually being MORE of a burden stressing about it all
He brought Kian to see me yesterday after asking if I wanted him to see me like this, I said Yes because at the age of 2 and a half he doesn't understand fully but he understands a lot, he knows I'm sick and I wanted him to know I'm getting better. Seeing him lifted my mood although it was hard to hear him say "no more tears mummy" because it should be me as his mum telling him that, me picking him up when he's fell down not the other way around but hearing that has made me try hard to not cry especially not in front of him but it is Hard I miss him I miss my own bed And I guess I miss my old life, my life before illness took over I guess I've reached this wall we're I've just mentally had enough.
I know right know these feelings are temporary, it's just a slight blip even if it's a lot bigger than usual I will pull myself together, but there you are I've said it those two words that I've not spoken since last year, those 2 words that recently the doctors are saying a lot and saying them myself makes me so bloody scared.
Find me also
- Posted using BlogPress from my iPhone
Wednesday, 5 April 2017
I've shared with you all every high and low from my heart journey in the past 3 years, from tears to joy, fainting to ablations, pacemakers to depression even photos of my scars on my chest But I'm struggling to talk about something that even I Inappropriate Danielle is finding difficult.
So why is it I'm finding it hard to talk about what I'm going through right now ?
Truthfully I'm embarrassed, my bladders went into retention, it's stopped working on its own.This is really uncomfortable makes toilet trips impossible but the hardest part of it all I'm so desperately sad and embarrassed, I have a catheter and a leg bag because I'm physically unable to go on my own now.
Why this slight bump in my health journey feels so much worse than anything that's happened before I have no idea, I suppose it's because it's personal.
Maybe I'm worried people will laugh, make jokes, perhaps I'm concerned this is too private to talk about on my blog ? But I honestly feel like I need to be brave for others with this in the way I was brave for others with ist.
When I say the words 'I can't pee', out loud, I get a huge lump in my throat, my voice changes tone, my heart flutters and my cheeks beam bright red.
Dougie said to me after we got in the car from the hospital, I don't understand everyone gets the urge to pee and eventually they pee, your bladder can only hold so much before eventually it bursts and you'll go. I felt like I was going to explode but nothing happened, even running the tap leaning desperately forward squeezing for over 10 minutes nothing was happening except pain.
Emotionally it's knocked me I feel nothing but sadness, everyday this tube is inside its slowly absorbing my independence, its draining my happiness I just keep thinking I've had enough health issues to last me a life time surely I catch a break soon,it just feels so unfair.
I'm trying so hard to keep my positive thinking hat on, maintain my happy go lucky attitude but I can sense that my family know it's forced that my smile isn't genuine, my pathetic jokes about the perks of not having to get up to use the bathroom don't ring true. I just can't bring myself to admit that I'm struggling, I don't want to talk about my lazy bladder how its stopped working and how I can't pee on my own.
God this isn't like me normally my family give me a row they tell me you shouldn't share anything that you would be to ashamed to hear read back and normally I have to rack my brain to think of something so it's ridiculous that this has throwing me so much, it's pathetic that I feel shame over a normal body function but guess what I feel shame because something as simple as peeing I can't do on my own right now.
I'm waiting for an emergency appointment to see urology, where I will be giving a scan and a scope to look inside my bladder which will hopefully give some answers, their also going to take the catheter out and see if my bladder will work on its own again, but all I can think about is what if it doesn't ? How long will I need to walk around with a tube inside my bits and a drainage bag attached to my leg for ?
It's horrible I can't wear anything decent because of the bag, I'm spending everyday in my pyjamas because I'm too embarrassed to go out, I'm so self conscious I know nobody can see it underneath my trousers but I feel like they can, I spend every evening changing the bag over to a bigger one, throughout the day I'm having to drain it , the bladder spasms are painful it's like your body doesn't like having tubes were it wouldn't normally have them and because of the spasms it's causing urine to leak outside the bag this is another reason that's making me scared to go out ,secondly because of that I'm having to wear incontinence pads to control the leaks.
Bladder retention normally happens to older men who have enlarged prostates so why it's happened to me is abit of a mystery but hopefully I get some answers soon. I got my impacted wisdom tooth removed last week which I found to be a traumatic experience and I guess sometimes our body's react to stress and trauma in strange ways.
The thing that makes me want to share this post is that I've learnt bladder retention can effect anyone with or without reason some due to childbirth, medication or cancer, and I'm pretty confident many of them will feel embarrassed and shame like I do but I guess I'm trying to carry my experience like a banner to help others know it's ok to feel this way.
Till I'm able to pee on my own again I'm putting a smile on, trying to get through one day at a time and I'm trying so hard to not let this sadness and embarrassment take over even when it feels like it has the power to do so.
Monday, 27 February 2017
Hello you lovely bunch its been a while I feel like I owe you all an explanation but before I start I don't really know were I'm going with this blog post or if any of it will make sense I just need a chat I feel like I just need to put pen to paper and write.
When I first started blogging it was for myself a diary so to speak, a place were I could take all my thoughts and feelings and put them in this small corner, my blog, It became a way to free my mind, free in a sense because they thoughts and emotions were no longer locked inside my brain but instead a page, a page I could open and shut when things became tough with my health. My mind needed freedom because truthfully I didn't know how to cope with the emotional scars my illness brought but through writing I was able to process those things that were happening, things that I found difficult to explain.
Most of the time I'm hit with inspiration to write even if what I write is rubbish, to me it still means something but recently I haven't had that, before Christmas I had lots of posts drafted up ready to publish but I switched from Mary Poppins to Cruella De Vill, I was in such a bad mood about blogging, I'm talking a full blowing pmt outburst were I sat wondering what am I doing, do I suck at writing, am I making a fool of myself, are people laughing at me criticising my writing thankfully that mood passed and my feelings towards blogging when back to normal.
The thing is I've always knowing people blog for all sorts of different reasons whither it be to make money, to receive free stuff, or because they love writing , whatever that reason may be, they blogs are all grouped into niches, I've always felt like the black sheep, like I don't really belong anywhere part of me longs for a niche to welcome me with open arms, a group that will encourage and support me to keep on writing but then the other part of me doesn't. I admit I write tiny snippets from all sorts of different niches but I don't want to dedicate my whole blog to one niche because that's not me that's not the reason I started this blog, I know barely anything about blogging truthfully I didn't even know niches excited until a few months ago.
Back in October when I wrote for Bio-oils scars uncovered campaign I started receiving email's offering me free stuff in return for posts ,I sat for many weeks toing and froing with the whole idea, I started wondering was I missing out since I was refusing to entertain the idea of sponsored posts and brand collaborations. In fact several other bloggers told me I was missing out that I could earn easy cash doing something I love and in return drive more traffic to my blog its a win all round right ? I'm not going to lie writing for Bio- oils campaign drove an overwhelming amount of traffic which was something I hadn't experienced before my inbox full of lovely responses from others showing pictures of scars and a story behind them something I took great comfort in, I wasn't the only one looking in the mirror and feeling shit about my scar battered body but writing about things like vapour pipes and coffee body scrubs just isn't my cup of tea.
The thing is I don't want to loose sight of why I set up this page I don't want to write content for content sake so I can be accepted in the world of blogging to be welcomed into a niche or to even gain a high rank on Goggle, ( I actually have no clue how any that stuff works btw) it's pretty simple I don't want to get sucked into blogging to make money or to receive free things it's like I've been offered a job promotion I didn't apply for I wrote for the scars uncovered campaign because I love writing about things I'm passionate about its no secret that I hate my scars not just because they look ugly it's a painful reminder of my past but a past I felt could help others, help them accept their scars and even their past. Through that post I was able to vent emotionally how my own scars affected my life and what they meant to me. But I didn't get paid for it I got free bottles of bio oil as a kind of payment for supporting the campaign the rest were sent out as a giveaway to help others come to terms with their ones too.
For anyone who doesn't know I started this blog 3 years ago the day my second heart ablation failed it sounds crazy I know not many people sit after surgery and think I know life's shit lets write about it but I did. Anyway here I was in hospital staring out the window watching the world go by literally passing me by as I lay in hospital a blubbering snottery mess, I felt like I had no real place in it. All these people were outside, walking, smoking, chatting in little groups putting money into the parking meter I felt like they all had a life a purpose all I had was a shitty diagnose with no hope of a cure, I was grieving over a life I wanted, I was mad, pissed at life words just started flowing It didn't have a reason, it served no purpose I just took every piece of my heart that felt broken and shoved it into words they words eventually became the posts you read here. Weeks and months passed were anything I felt anything I wanted to say I used it as an outlet for my emotions I admit some of the posts I published I'm embarrassed about I've even swayed with the whole idea of hitting delete but I haven't because there all reminders of hard times during my heart journey were I look back and think god I remember that, that was shit and then I move on I move on with a sense of delight because it's in the passed a passed I lived survived and came out the other side 10 times stronger.
Sometimes mentally I struggle, I just need a little swift kick up the backside my blog gives me that, I find myself reading back just to remind myself how far I've come in a strange way I still find things hard to believe, I still struggle to believe that when I was pregnant I got induced 3 times 3 weeks early and my darling stubborn Kian was still 2 days late because seriously does that even happen ? It did, because it happened to me, happened all because of my shirty Inappropriate heart But someone somewhere might have that same shit luck (if you can call it that baby's are blessings) but they might just land on that page it might be all they need to hear that day just to stop the tears flowing. I know it now makes me laugh.
Its funny because people say its all about your attitude towards life, you just need to be positive, as cliche as it sounds turn that frown upside down, they'll tell you everything happens for a reason, to be grateful for the life you have because some people have it so much worse but at that point in true Danielle drama style I felt like nobody could be worse, at the age of 22 I was diagnosed with a heart rhythm problem and told there's nothing that can be done they didn't know how to fix it, if they ever could, I was going to spent the rest of my life calling into work sick never having enough money to pay the bills pondering over how crap life is mostly from the floor with my legs propped up higher than my heart but strangely fast forward a year later it became so much worse if only back than I knew that But the thing is I did just that I turned that frown upside down and started writing to help others and I haven't stopped doing that.
What I didn't realise when I first started blogging was how much it would help others faced with the same condition, through the struggles I shared I was always met with positive comments, words of encouragement, gained 1000 of likes even made new friends. My inbox was and still is always full of lovely messages asking all sorts of advice from ablations to anxiety, pacemakers to pregnancy the list goes on but I love it. It was at this point I realised I could really help others, I could give others all the advice and information I wish I had knowing back then but didn't I'm no heart expert I'm not even a doctor but by sharing the things that happened, the obstacles I came across with having this shitty condition I could give support, the support and shoulder I didn't have but wished I had all those years ago. I've come to love the feeling of writing knowing it can help others going through the same struggles because truthfully I never want anyone to feel like I did 3 years when I started this blog I was a wreck I was alone, scared stuck in this invisible illness bubble were I felt like nobody could understand what it's like to live a life with your heart controlling it day in and day out, in fact the day I was diagnosed I hadn't heard anyone else refer to their heart as Inappropriate.
What I recently realised was I'm not only helping others but advocating for heart rhythm problems as a whole I have a rare condition that many medical professionals don't understand, some haven't even heard of it I've been on the end of doctors harsh ,rude comments so many times, the end were you start to question are you really sick or just crazy But I've decided the more I write the more awareness that brings and therefore I figured less ignorant individuals in the world.
However I guess what I'm trying to say is screw fitting in its nice to be different this tiny place on the Internet is an outlet for me it's kind of like therapy when my heart goes haywire, I'm sorry that I'm not sharing beauty hauls or taking perfect food pictures just so I can fit in, if that's what your after you've came to the wrong place. I'm a blogger without a niche. I wear my heart on my sleeve I don't hide anything in real life or on online, I put myself and my blog out there not just abit I fully put it out there for people to judge, criticise , pull apart but to help others, to raise awareness I figured if I don't advocate for my condition who will ? I'm the blogger without an identity, I'm opinionated, but honest I'm not your perfect size woman, or plus size model, I'm a mum with a heart rhythm problem, my mouth is just as inappropriate as my heart is but I'm just me, Danielle
So here I was sitting last night scrolling through all they emails sending the same reply to them all thank you but no thank you, it was great because suddenly I felt a sense of relief I found myself staring at my laptop missing this blog missing writing and remembering why I started it all in the first place and fitting in isn't one of them.
Sorry, not sorry that I don't fit in.
Find me also