Kicken some chronic illness ass

Haha, I said Ass on the Internet! What kind of google searches will I come up in now?

I've been feeling reflective today and thinking back to December 6th 2006, the day I was officially diagnosed with Congestive Heart Failure and faced an uncertain future. I have been thinking about how I view the anniversary of my diagnosis each year, and how this has evolved. I have always felt a sense of achievement as each year has ticked by, a a feeling of having won one more year of my life back from a heart condition I shouldn't have had to worry about for many more years.

In the earlier years, as the first year of living with my diagnosis went by quickly followed by the second there was also a sense of loss, guilt and sadness attached to each anniversary. I looked back on the things my illness had taken from me - a chance to have more children, the experience of having energy to properly take care of my twins on my own, actually energy to do anything.

Something has changed. I'm not even sure when it began, but certainly this year as my fourth year of living with a heart condition I was seeing things very differently. A sense of victory and smugness as I have survived. I am a survivor, not a victim. I have found things I can make choices about rather than focusing on the things I have no control over. I have a little evil chuckle to myself as I think of how this year I lived well despite the annoying presence of Dilated Cardiomyopathy and the increasing presence of an autoimmune condition.

I get tired easily, I get ill easily but I also live well and I love every small achievement. Even if I get to the point that I am completely 100% physically well I would not want to put behind me all that has happened. That would be ignoring a huge influence in what has made me into who I am today. I'm getting to quite like that person.

I also consider the odd day of feeling down, a few days of being frustrated by my body, some times of grieving for what may have been COMPLETELY normal. I'm sure I will still have those times. I hope I still have those times, they make me compassionate and understanding. Over all though my focus is truly changing. I feel for once I really am not defined by chronic illness. Just one example, I no longer feel the need to say I am a Stay At Home Mum due to illness, rather I say it is by choice. With factors which influence that choice of course but MY choice all the same.

How lucky I think I am to have experienced such a life changing illness. How lucky am I to be surrounded by loving people? To have seen first hand the kindness of human nature.

Lucky. And a hard working fighter. And though I know there will be days where I feel I am losing the fight against Chronic illness, I know I am winning the war :) I am living a blessed life with Chronic illness.

Thoughtful

I have had a story buzzing through my mind for a good number of years (10!) now. I have always meant to get it all down o paper, not for the purposes of necessarily having it published or widely read but just to get it out of my head. To put the characters to rest on the page so they stop popping up in my mind all the time.

I was part way through the first half of a very clunky first draft when I met my darling husband. Then I lost my desire to write as I was so busy enjoying falling in love and the consequent beginning of a family. All of you who have followed me here know what happened after my pregnancy, and with little twins relying on me and a struggle to regain my health any thoughts of writing went by the wayside.

Until the end of last year (Can you believe 2010 is now last year!?!). I have been seeing a counsellor to help me unravel my feeling around being chronically ill, and I bought up how much I enjoyed writing and yet I never did it anymore. That story was still there, waiting to be written. It has evolved over time and my first attempt and restarting it hasn't gone well. I did no planning and jumped right in, quickly losing interest as it just didn't feel right.

I also tried writing about other things. Short stories, stories based on my illness, anything but none of those eventuated as my old characters kept sneaking forward.

So now I feel like I need to have a proper go at this. Once an for all get this idea out on paper and see where it takes me.

My goal for 2011 is not to complete a novel. It's not even to write a certain number of pages. Simply I would like to get the workings of this idea out on paper. A plan for where I would go with this story, what the characters would be like. To see if it would work before I pour however many hours into writing it.

Wish me luck! These characters have been haunting me for 10 years already so we'll see how hard it is to shake them!

xoxo

Busy

These holidays are speeding by in a happy blur of busy-ness. I have had the good health to enjoy a couple of outings with my three boys, and the good sense (Finally!!) to rest when I need to.

We have managed a walk (albiet the shortest one) at Battle hill, a trip to the Horse races which my sweet Benjamin has been waiting a long while for, trips to the library, trips to the pool and lots of time with family and friends, especially one of my nephews and one of my nieces who make our family outings feel complete.

In amongst all that I have had some really tired days. I had one day where I couldn't make it out of bed all morning, I was achy and sore and just tired. I felt a little bit of anxiety creep in, which always happens when I am that tired and have to stay in bed, and I managed to make it go away! It was such a relief and I am hoping that 2011 gives me even more insight into learning to live positively with my illnesses.

One of my dearest friends Anushka is currently visiting the country she was born, and I am missing her very much. Any prayers, good thoughts, positive vibes whatever you like to do, if they could be sent her way so she enjoys safe travels.

xoxo

Happy 2011 Everyone!! :)

Well a lot has gone unrecorded during 2010 but that doesn't mean nothing was happening. My beautiful little babies decided to go and turn five on me, meaning the beginning of their school journey and the first time I would be on my own five days a week.

My health continued to be much of a puzzle, with my Decemeber trips to the specialists bringing some light and good news. My heart is functioning close to normal now and I am now in the maintanence stage, keeping this heart which has been through so much healthy. A second visit to the rheumatologist has bought a tentative diagnosis of unspecified Autoimmine disease. Unspecified due to the fact my blood tests have come back non conclusive but I display all the signs and symptoms of a autoimmune condition so have started on a medication (Plaquenil) which will build up slowly in my system over the next few months and hopefully will bring some relief.

2011 for me is going to be a year of recovery and focusing on myself. I am going to rediscover all those things I enjoy, continue to learn how to live with chronic illness and try to feel less frustrated with my body.

So if I had a new years resolution it would be this. To record more of what is happening during 2011 just to see how far I have come and to enjoy focusing on this journey called life.

xoxo <3

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'