Did you miss me?

I know I have missed me. The logical, think things through and upbeat me. I have missed the me that didn't fool myself. The me that went ahead with all medical advice because while the side effects of medications can be awful, the alternative (Being dead) isn't fun either.

It's been an emotional few weeks for me. I could go back to January, around the time I last posted, and update everything that has happened. Or I could just start afresh. Pour my soul out and start afresh. Yes, that is what I will do.

Time for me has very little concept. There is right now, what is on the calender for this weekend and when I am unwell I tend to forget altogether how much time has past. An unwell week for me feels more like a month. But is May (Which feels like a year ago!) I had a check up with my Cardiologist. Here's what he said:

"Well, I'm very pleased with how things are looking. Your heart function and size has improved even more, and I think we can trail weaning you from one of the medications. Everything else should stay the same and we will re asses in 6 months. If we hold off seeing the rheumotolgist for now and revisit that idea if you start to feel unwell again."

What I heard:
"You're cured! It doesn't matter so much if you take your meds now! Just take them whenever you like! Not rhemotologist, you are fine! YAY!"

So just a slightly different interpretation. Just a little. But it took for me to get really unwell again to look back at that appointment and focus on what had actually been said and what I had badly wanted to hear.

I took myself off the medication my Cardiologist recommended. I took myself off the diuretic too, because it's a PITA to take. I decided I would take the others when I remembered. There wasn't any need to be vigilant anymore. And for the first week I felt OK. I got a cold, which seemed to make it difficult to breath but that was normal with a cold really. Right? My clothes started getting tighter even though I was barely eating, but again my body sucks and likes to gain weight so...

Then I thought maybe I should take just half the dose of my prescribed diuretic just in case I had a little fluid. Enter weekend from hell. I was needing to use the bathroom every five minutes. I couldn't focus on anything, I just had a constant feeling of a full bladder. The feeling like you are just about to burst? ALL THE TIME. I was even up and down all night. I thought to myself, this diuretic is bad for me I will go to my GP and get myself permanently off it.

Even though my Logical side was screaming "YOU idiot, your so overloaded with fluid now"

My emotional optimistic side said "Oh, it wouldn't hurt to take a day off the diuretics, this is a nightmare!"

Well, it turns out I'm not a doctor. I'm certainly no cardiologist and in fact I am not cured. My heart is working well because it is supported by all these medications. Take them away or not take them properly (Like I have over the last month) and all hell breaks lose.

By the time I saw the Doctor it was estimated I had 6kg worth of excess fluid in my body. That was after taking the diuretic for two days prior. My heart rate was high and irregular and the sickness I was blaming on the diuretic was actually my heart struggling to work with the sudden loss of it's 'life support' for want of a better word.

So I had a heart to heart :) with my Doctor, and I finally let myself feel the emotions I had been trying to squish and ignore. I'm 27 and won't have anymore children - even if my heart could cope I couldn't. I will be on some level of medication for the rest of my life. My heart is always going to be sensitive to viruses (I always get arrhythmia's every time I am sick) and with a low immune system, I do need to be careful and look after myself.

I was striving to be well, normal, like any other person in their late twenties. And all I did was make myself sicker. Today is the first day in a week I am not rushing to the bathroom every 5-10 minutes (Now it's down to 30-60 minutes!). I am feeling down and anxious for reasons I can not completely ascertain at this point but am sure being kind to myself will help. A flare up of illness tends to cause a flare up of anxiety.

So just when I thought I had this whole chronic illness thing down I realise I actually have a whole lot more to learn. Like that chronic means for the foreseeable future, not just until you get sick of being sick.

Well I never!....

I've been a little MIA from my blog.

But for very good reason.

When I started blogging, originally on a different site maybe about 2 years ago I never thought I would be able to one day write a post like this. That I would one day find a way to balance my life, be well enough and look after myself properly enough to be where I am.

I am living a very full and busy life right now that contains chronic illness but is not controlled by chronic illness. My day no longer revolves around my meds, rest times, trying to find someone to help with the twins. Of course I also am not in the middle of a flare-up but I hope that when that does happen (I'm picking this winter, when my low immunity becomes a real pain) I will be in such a routine of balancing my life it won't hit so hard.

I am now working in what would be my dream job. It fits in perfectly with being a Mum, and being a at times unwell Mum at that. I work while my boys are at kindy with one of the nicest people I have met, with gorgeous baby clothing! I am really enjoying it.

I am really exhausted by the afternoons, and our house is looking decidedly untidy at the moment, but i figure with time these things will ease or become more manageable. We've come through so much, my little family.

I'm so proud of us.

The many days of 'summer'

We have had three glorious days of summer. Now it's back to raining. But we packed a lot into those days, even if we have no other 'summery' days again we have done everything we hoped to.

With the pox all gone and the boys back to feeling well we went out exploring. We have seen the Karori Wildlife park (Best for kids older than four I think, but at least now I do), been to the movies, had a picnic in the park, gone for walks, played at the park. Tomorrow we will go to the library and that's it. Then I am planning a good rest to try and get rid of the bouts of SVT triggered by the busy week.

This weekend is Wellington Anniversary so we have Craig home for three days. And then I start work! Yup, quite surprising. I have never talked about job searching, job hunting, job anything on here before. That's simply because before Monday I hadn't even thought about it. My focus has been on Mothering and getting better. And while my focus will still be on these two most important things, I'm ready to try expanding things. It's a part time job during kindy hours and I'm really looking forward to it.

So just a quick update, I'm off to bed to listen to the rain on the roof. Wit my electric blanket and fleecy pajamas on. Ahh the many days of a Kiwi 'Summer'