Music Notes of Life

You may notice the new gadget I have added over there on the left side of the page. My brand new weight loss ticker with the cute little heart on it. As a result of many doctors appointments this month, I am feeling very content with where I am health wise right now, and full of much hope for the future. I also have a few goals for myself in the next twelve months. Things that will add to my learning to take care of myself and putting my health first.

One of my goals is weight loss. This has been a long term goal for me since the birth of the twins, however due to many circumstances out of my control (Heart failure, arrhythmia's meaning exercise was not allowed, PCOS and worsening Insulin resistance) it's not really been top of my priority list. When it did become something I could work on, I quickly learnt that this too was not in my control. With so many things working against me, it has been a long hard struggle to try and lose, and then just try to maintain my weight so I wouldn't put on more. I have just realised it needn't be this way. It doesn't need to be a struggle. When I am doing everything the right way, and my health is so poor my body is not in the right place to co-operate. What more can I do than my best?

I have finally seen all my specialists in one month, so there was no need to double check things between each other and make more appointments for three months time. I was the go between, taking comprehensive notes of blood tests and questions for each specialist to each appointment. I now have very comprehensive treatment and follow up plans. I have been given many options, which I won't go into. I really wish to share what I have chosen to focus on right now, and not what may or may not ever need to be done. Of course, I will share those if they ever become a necessity.

With Insulin resistance, the body has difficulty processing glucose. It tends to store everything as fat. With Cardiomyopathy the heart is weakened and can't pump as efficiently causing fluid build up. With uncontrolled arrhythmia's it is dangerous to exercise. With a mysterious autoimmune condition going on, it is difficult to find the energy to fight for what you need from your doctors. This month I knew I had to. It was my chance to see all six specialists and get a good plan going on.

So, the endocrinologist (Looking at my PCOS and how to treat it) is increasing my Metformin, a drug typically used in diabetics but proven to be very effective in treating Insulin resistance and PCOS. Hopefully this first step is going to aid my body to get back into order heal it's self. My Cardiologist has increased my beta Blocker even further and it's working! Decrease in arrhythmia's, decrease in tachycardia and a resting heart rate of 75bpm!! Actually, the other night I woke up and said to Craig that I thought I was dying as I couldn't feel my heart thumping away. He very calmly helped me find my pulse, and explained it was normal not to be aware of your heart rate! Wow, I'm loving it!

As a result I have clearance to exercise! At this point in time absolutely NO running, really the only thing which is OK is walking. So I'm starting off on my parents treadmill at a very slow flat speed for 15 minutes each day. Over time I'll build up intensity and length of time, with the hopes of reconditioning my heart after all it's been through.

And it's been through a lot. So I'm working on taking care of it. I'm working on helping my body to heal itself. I mean, I've come through Heart Failure. I have every confidence the rest will take care of itself too. Provided I continue to do everything I can to support it. So I'm hoping my body is going to thrive with all these changes to help it function well and I'll be able to move my ticker along until sometime in the next twelve months I meet my first goal. Looking forward to sharing this new part of the musical notes of my life with you all!

Everythings OK, and thoughts for Claire!

First of all can everyone keep my wonderful friend Claire in their thoughts. She's facing something quite scary over this coming long weekend. I'll be sending lots of positive thoughts her way and would appreciate if you could do the same :)

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I'm not feeling too well at the moment. But I'm happy and doing well at the same time. The cycles of chronic illness are so unpredictable, which can cause such frustration when you have plans you desperately want to keep. There's a feeling of lost control over your own body, a difficult thing to explain to someone who hasn't been here. Those well versed with chronic illness in their own lives know what I mean. One morning you feel fine, by that evening you're in pain, or absolutely exhausted, or short of breath, the list goes on.

I however now find the unpredictability somewhat predictable. Confusing? Well, I know for sure my health issues are not going to disappear. I know for sure that certain things, such as lack of sleep, a unhealthy eating day, not resting when my body tells me too all contribute to my not so healthy days. Then there are times I do everything right and still feel yuck. It's going to happen. It's part of my life. It's part of who I am now. It's somewhat predictable. Unreliable, and yet so very reliable at the same time.

So I'm not feeling too well tonight, but I am happy. I am feeling contented. I am being kind to myself and not pushing myself to do more. I am grateful to be in this part of my journey, travelling with happiness rather than towards it.

Awaiting as update?

Yes, I did visit one of my specialists today.
Yes, it went quite well.
Sorry, have lots to digest and this is sadly not a proper update.

I do have concussion though. Baby A smacked his head into mine, and ran away laughing having no idea he'd just given me a rather large forehead lump. The joys of being three.

A sick Mum who does get sick days

I know that for many parents, one of the hardest things to adjust to once starting a family is no longer being able to put your owns needs first when you feel unwell. You still have housework to do, kids to feed and look after, washing that needs doing, the list goes on. When you get sick, most times you can no longer crawl into bed and take care of yourself. You don't get sick days.

Now in my situation the same thing is true. It just occurs much more often then we ever imagined when we were planning for our family. My husband can't take every day off during the week that I feel unwell, otherwise he would hardly ever be at work. We can not afford full time care for our twins. There are some days it is just unavoidable. I feel terrible, but there is much to be done. The fact is, on these kinds of days It is hard to think of anything good about having a chronic illness. I struggle to remain positive while feeling short tempered and exhausted. I can't find the energy to dress myself, let alone my twins. I have realised though, that learning to live with a chronic illness is a process. Through it I am learning to be kinder to myself and less hung up about being the *perfect* Mum.

I am very lucky in all this to have a very supportive husband whom allows me to rest up all weekend. All Weekend. For example, it's Sunday evening and I've had a grand total of about three hours out of bed all weekend. I am exhausted and my heart is racing. The boys have been coming in for cuddles and stories, but on the whole have had a fun weekend with Daddy. I am not ashamed to say that this is not an uncommon occurrence. I have learnt to put myself first, to give myself the best possible chance of getting through a week with as little stress and fatigue as possible.

The boys are preschoolers. They are so active and yet only attend kindergarten three afternoons a week. I am happy to share that three mornings a week they go to before kindy care. That's right. I'm a stay at home Mum with a Nanny. This has been the best possible move for us all.

Those days that I have two little boys at home all day and I feel as though I've been hit by a truck? Well, cereal isn't going to hurt them. Even if they get it for breakfast and lunch. They love yoghurt's and fruit(Yay for Claire, who has recently gave us with even more of the boys favourite things! We love you!), two things I have to do very little with in order for them to be served. They get dressed if Craig has managed to do it, otherwise a PJ day is declared. We have an easy dinner, and we do try to get out of the house (Dressed, don't worry!) for a short walk to get Daddy from the bus. It's my daily walk and for them some time out of the house. A ten minute walk has been managed to be stretched out to about half an hour ;)

All in all, I just let it go. The housework isn't going anywhere. The room I began de-cluttering a week ago will get done on a better day. I lower my expectations and I take care of myself and those boys and that's it. Those are my sick days. It's been a journey to this point for all of us, especially my husband and I. A lot of guilt and expectations about roles in the home has gone, leaving a peace and gratefulness to each other for all that we do. And even though this sounds incredibly strange, I congratulate myself for putting my health first so that I am here with my boys. In every sense of the word.

Prince James

I love to make up stories to tell my boys. Either before they go to bed, or in the morning all tucked up in our bed is our favourite time, and I find both my boys love the stories in which they are the lead characters. Yes, I realise I am using the boy's real names in this. It's much easier in this circumstance and their names are indeed no secret to most reading this. i just like using Baby A and Baby B as it helps me wax nostalgic about back in the day when they were in my tummy and that is how we knew them.

Anyway, onto this morning. James was in bed with me, Benji having woken up at some horribly early hour 5.50am. I asked James if he would like a story, and the following is what I told him. Keep reading to see the story he told me afterwards;

Once upon a time there was a little boy, Prince James. He lived in a castle and his room was right at the top, with a view out to his friends houses. One morning he woke up and looked out the window to see it was a beautiful day. To his surprise he could see his friend Thomas the Tank Engine puffing along the tracks near the castle. Prince James quickly got dressed, walked safely down the big spiral staircase and outside to the Castle's railway station. He got there just as Thomas arrived.

"Would you like to go for a ride?" Thomas asked.

"Yes please!" replied Prince James, very excited. All of a sudden, just as Prince James was about to climb into Thomas, Swiper the fox appeared and swiped all Thomas' coal! Naughty Swiper threw all the coal into the forest, telling Prince James he would never be able to find it now. Thomas was very sad, as now he couldn't take Prince James for a ride. "Don't worry Thomas, I'll find your coal!" Prince James promised bravely.

Prince James set off into the forest. He knew he was only allowed to go as far as the clearing so he hoped he would find the coal quickly. There were four pieces missing. He found the first one by a tree as soon as he entered the forest. He walked a little farther and came across a Monkey in a tree. The Monkey was playing with a piece of coal.

"Hello Monkey, could I please have that piece of coal for my friend Thomas?" Prince James asked.

"You asked so nicely, of course you can." The monkey said, and gave Prince James the piece of coal. Prince James kept walking a little bit farther and found a little mouse, trying to lift up a piece of coal.

"Hello mousie, may I please have that piece of coal for my friend Thomas?" he asked.

"Of course, as you have lovely manners." replied the Mouse.

Prince James set off to find the fourth and last piece of coal. He eventually came across the clearing, where he found his brother Prince Ben. Prince Ben was playing with the last piece of coal!

"Ben, may I please have that piece of coal for my friend Thomas?" Prince James asked nicely.

"NO! My coal!" Prince Ben replied grumpily.

"Please Ben, when you're finished your turn could I have the piece of coal?" Prince James tried once more. Prince Ben was very grumpy, and shook his head.

"I don't think so. It's Mine! I want it!" he yelled. All of a sudden the Prince's Daddy appeared.

"Prince Benjamin, you need to share with your brother please. When you have finished your turn please give the coal to Prince James. Otherwise you might need a time-out." He said. Ben looked at the coal, and then gave it to James.

"Here you go James, your turn." he said. Prince James was very happy. He ran all the way back to Thomas, who was also very happy, and they both set off on their fun ride. The End.

At this point James decided he wanted to tell me a story. The story he shared is as follows;

Once upon a time there was a little girl called Mummy. She saw Thomas, and me, and then Swiper came. He took all the coal. So Mummy and me went and looked. We found a monkey "Please Monkey." and the Monkey gave it to us. We saw a Mouse and said "Please Mouse" and the Mouse gave it to us. Then we saw Ben. We said "Please Ben." But Ben said "No!" Then Daddy saved me, and Ben went wah wah wah. The End!

I quite like how Daddy 'saved him'.

Cute.

When will I know what I want to be? Who am I now

I have often pondered just what I would be when I grew up. When I was very young I was convinced I would become the Prime Minister and do away with taxes. I didn't understand how someone could just take part of people's incomes and get away with it. As I got a little older I decided I would be a vet. Small problem, I'm scared of most animals. So then I moved on to wanting to be a writer, and by the time I finished High School I had settled on Nursing. After completing year one of the Nursing degree I realised I was much too emotionally involved to continue in that career.

I felt I was back at square one. I was eighteen and felt like I was failing because I didn't know what to do with my life. Now, at this point in my life I think what a ridiculous amount of pressure I put on myself. I began hunting out job options, and study options at University. I decided to do a general degree so as not to be trapped on one career path. I managed to achieve a Bachelors of Arts in Psychology and Criminology.

But I still wasn't sure what I was going to be. I felt I should be doing something amazing, changing the world or at least making some kind of difference on a large scale. As it turned out, we started our family at this time so all my thoughts of jobs or study faded away as I became a full-time Mum. And then a chronically ill Mum.

I still find myself from time to time beating myself up for not financially contributing to our family. For not being clear on where I'm going. For having a non existent career path. Then yesterday, as I found myself once again feeling panicked by thoughts of never being able to hold down a full time job, or even what kind of job I would ever be able to do, I stopped. I thought about the article in this post. I thought of all my friends and family. People who love me and just want me to be happy. I then realised when I have these negative thoughts I am putting down who I am now. I am badgering myself for things that haven't happened yet and that I have no control over.

I don't want to be missing my right now, to focus on a fuzzy future. Right now I am a Mum. I contribute to our family in so many ways in this role. I am an Auntie, one of the best roles ever. I am a daughter, a sister, a friend. A wife. Sometimes a chronically ill person, but most of the time a Survivor. All of these things are so much more important than figuring out and berating myself over a future role which may or may not become possible to fulfill. This is taking away from my right now.

Of course as my lovely good friend Michelle says, it is good and important to have goals. Something to strive for and look forward to. The thing i struggle with is setting myself impossible goals and pinning my happiness and sense of achievement on achieving them. I knock myself about my illness induced weight gain, feeling I should have complete control over what size my body is. In my situation I actually need to get better before this weight is going to shift, something I have no control over. I can eat well, and exercise and that's the best I can do.

So I'm taking my focus away from future career moves. I'm going to stop asking "What will I be when I grow up?". I'm going to stop using the scales as a judgement of how well I am looking after myself. I am going to focus on Right Now.

Longest, tiring, good then scary day ever

I had my gynae appointment today. I was really nervous about it. I'm not entirely sure why. Last time I had my Mum and sister accompany me, while this time I went on my own so that may have been part of it. The appointment actually went really well, and THANK GOODNESS I don't need surgery at this point. The large cyst I had has dissolved, and the right overy still looks polycystic. I may have some endometriosis, but with the rhythm issues I am having with my heart my wonderful gynaecologist feels that surgery at this point in time since the large cyst has gone would be way more risky than beneficial. I'll stay under his care, and just go in to see him if I get the severe pain again. He's the most fantastic doctor.

I think all the driving really tired me out. I ate poorly today as well with all the rushong away, so by the time it got to kindy pick-up I was fairly exhausted. Which I think contributed to what happened next. Due to my appointment time my Mum had dropped the boys off to kindy and had one of their car seats. On the way out of kindy Baby B asked if he could go in Grandma's car and we had been invited for afternoon tea so agreed he could have a turn in Grandma's car. Next thing we know, Babies A and B are racing each other down the hill to try and find the cars. Now they know not to go out of my line of sight. If they can't stay close to me they have to do the most dreaded thing - hold my hand.

They also know that due to my heart rhythm issues I can't run after them (Mummy gets a tired heart and can't keep up!). Physically, when I run I feel as though I am going to pass out. On occasion, I have passed out so running = not good for me. So I desperately call out after them, threaten them with time out and walk as fast as I can to catch up. I reach Baby A. Baby B is nowhere in sight. Luckily my Mum was there with my three nieces and nephew she was picking up and spied baby B ACROSS THE ROAD! This road is extremely busy with all the parents picking up their kids. I have no idea how he got across it.

The worst thing is, my Mum had two kiddies by the hand, and I was walking some way behind her, trying to catch up to take Baby A's hand. Before I could get there He suddenly darted out onto the road, right in front of a car. The driver barely managed to stop in time, and was extremely shaken up by it.

I told them off so sternly while holding back tears. But for the grace of god we'd be at the hospital tonight. We've put the boys to bed early as I'm just exhausted physically and emotionally tonight. I held them close and gave them goodnight kisses, and thought I have never taken you for granted. I don't need a wake up call to how precious you are.

But perhaps I need a wake up call on how we behave out in public when I'm not feeling well and can not chase them. It's too late when I pick them up and am already tired to work out a plan. But tonight I am going to sleep early. Tonight I am just so pleased both boys are snug in bed, healthy and safe.