The one about Michael

Today my precious Michael should have been turning 6. Graduating prep in a few weeks. Excitedly writing a Christmas list with his mis-spelt, uneven, oversized handwriting. He should be excited about having a party with his friends. The same prep kids I see at Jadis and Charley’s school in their tiny uniforms and huge backpacks who tear my heart out every time I see them. They should be the ones happy to be coming. To celebrate with a child they never even knew existed. A child who often feels, even to me, like he never existed. But he did. I had dreams for him. For us. For me. I thought I would be celebrating a birth not a funeral. Awake at night with an unsettled, crying baby, not eyes swollen with tears, in a house that was eerily quiet. I should have been looking at his hand me down clothes, fondly remembering them being worn by his brothers. Instead i having them in the back shed, where I am unable to even look at them as they are now tainted with memories of the boy who never wore them, not just the ones who did. 

6 years ago my innocence was shattered. I never knew a babies heart could stop beating before they were even born. That was something hidden away at the back of a book in the small print wasn’t it? Not the things you see happen in real life. Not the ones that happen to you. And even if I had known it was possible it could happen to me, I could never have imagined the life long effects it would have. 

I never knew it was possible to miss someone you didn’t know. But I do. I hear people use his name for a different child when I’m out in public. I kiss 3 sleeping heads each night instead of 4.

I realise that this doesn’t go away. It doesn’t get less. It won’t get easier. I learn to adapt. I keep things to myself. I cope without outwardly freaking out. My tears mostly fall on the inside, occasionally overflowing down my cheeks. 

This week I’ll visit the cemetery with a picnic like we do every year. A cake and candles, parents, brothers and a sister to sing happy birthday. 

But this week, like every other, I’ll remember you. Wonder who you would have been. Brown eyes or blue? Blonde hair or brown? Imagine your smile as you run out of school with your first birthday award. The smiles as you opened your presents. Your exhaustion after your party, and your eagerness to get up the next day and keep on living life full of energy like a 6 year old should. 

I will remember you, just how you were, it’s all I have. Like a mother should. Like any mother would. 

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The one about the slippery slide

  

The thing about bipolar is that everything has its price. Being high for weeks has eventually led me down a very slippery slope. Yesterday I felt on top of the world. Today that couldn’t be further than the truth. 
The last couple of weeks I’ve done a large portion of my Christmas shopping. Shopping excessively is a hallmark of mania. Last week I felt like I had overdone it in a short period of time worrying that it would keep happening for an extended period causing problems. Right now I’m glad I did it because I don’t know when I’ll be able to face the shops again. 

Last week I got an impulsive matching tattoo (small thank goodness!) with someone. I know every tattoo has its background story which last week I loved (and I’m sure I will again) but today that sounds stupid. 

Last week Nathan caught me on a good day and we bought a puppy he’s been wanting for a few years. Today I’m cursing because I’m the one chasing him around stopping him from chewing stuff and cleaning up his pee. 

Last week I was loving having bipolar because of the intoxicating high that had lasted for weeks. Today I loathe it because of this devastating low which I hope only lasts for a few days. 

Last week I had boundless energy and drive despite a lack of sleep. Today I’m “hungover” from a night awake stressing and know I’ll be tired for days. 

Bipolar is like a game of snakes and ladders. Always something to lead you up or down, but those two extra special tiles, the one that takes you from 10 to 88 and the one that goes from 95 back down to 2. One feels amazingly lucky, the other like you can’t ever win at anything. Yet they both exist on the one board. Both take you from one end, dangerously close to the other. 

Today (and realistically most days) I hate this stupid disease. I hate that I used to have such good control of it I didn’t even know it was there yet now, it seems to be controlling me. I have asked why I can’t control it anymore and the answer was that sometimes conditions get worse. Like suddenly developing diabetes or high blood pressure. Or having a stroke or heart attack. It still sucks. 

Last week I was glad things in me had changed. This week I just want it to go back to how I was.

The one about letting go of what no longer serves you. 

In the last 6 months, I have been through a lot of changes. Some new things have come along that are helpful and I’m loving. But other things have become less helpful than they were before. 

I’ve realised that sometimes I just need time alone or with my own family. Other times my mind and effort needs to just be with my closest friends. And sometimes I need to do something really social with just about anyone. 

On the other hand, there are things I need to let go of. I need to stop saying yes to things too far in the future. I need to stop saying yes just to make sure I don’t hurt someone’s feelings. I need to stop saying yes when I really mean no. 

As my mind races at a million miles an hour, it can be really difficult not to ruminate on things and people who do not serve me anymore. People who have deserted me. The things I can’t get over, even if it’s just a small part of a situation or relationship. 

I once read that holding a grudge is like letting someone or something live rent free in your head. They take up space but serve no useful purpose. It’s about time I became the landlord from hell and kicked these lowlife thoughts out. I’m worth more than that. And if my mind needs to race, I want it only to be interesting and purposeful (and sometimes very random!). 

 
I’m not sure how long it will take and how difficult it will be, but today and all the days from here on, I’m making a change. I’m going to try and let go of all the things that do not serve me well. All the things that contribute to stress and anxiety and general unrest in my life. And if I don’t manage to do it first time I will keep trying. Because I don’t want to be ruled by that shit anymore. 

The one about the bigger picture. 

Do not overestimate what you can do in one year, and underestimate what you can do in five. 

Something I’ve often told other people but am finding it hard to believe myself. 

I’m struggling to see a way out at the moment and it’s looking like a long way ahead until things start improving health wise for me. I haven’t found any effective medications yet after trying many, I’m off work, have weekly appointments with my GP and my psychiatrist, go to the hospital’s day program twice a week, feel crap a lot of the time and feel amazing the rest of it. Some nights I barely sleep. There seems to be a knock on effect of where my head is to quite a few other physical symptoms. And it’s all totally exhausting. 

Do I see myself still here in a year? Maybe. Unfortunately at the moment my answer is that it’s likely. I’ve already been here 6 months. But do I see myself here in 5 years? No. I am hoping (and expect) to be much better. More level headed, have effective medications, see my doctors a lot less (and hopefully only when I need new prescriptions!) and not have to go to the hospital at all. 

So this is what I’m trying to make my current thinking. The bigger picture is so much more important than what’s happening right now. Almost every acute situation will be a distant memory in a few years time. Even the worst ones.  

 It’s so hard to see where you are, in the moment. And that’s sometimes as far ahead as it’s possible to think about. And realistically, it’s all we have, as the future is never promised. But there is always a bigger picture. It’s not always better but most of the time it is. And in this situation I think it will be. 

The one where life has you by the balls. 

Life totally has me by the balls at the moment. There have certainly been plenty of other times this has happened in the past but the difference has been circumstance. It’s been about things I can, to some degree control. They have mostly been times when I have poured my energy into holding up the rest of the family and holding us all together.
Although those times have absolutely sucked, and I haven’t been able to do anything to prevent them, I have always found the strength to keep going and most of the time the energy to keep a smile on my face as it received one slap after another from a life, which at the time seemed determined to beat us. I kept walking through every storm. One foot in front of the other. Sometimes hour by hour and sometimes even minute by minute. Each one being a victory worthy of a huge celebration. 

But this time is different. My brain is attacking itself. It’s totally fried and confused and doesn’t know what the hell its doing. It’s like it’s forgotten how to function. It’s distorting my thoughts and view of the world it’s making me do things I’m certainly not proud of, it’s taking the ability to keep a smile on my face and it’s gradually eating away at any strength I have left. This time I no longer have the control of holding others up through tough times and being proud of it. Some days I feel I can’t even hold myself up and I wonder how long I can keep hanging on for. Other days I could hold up a million men without getting tired. I could climb Everest without so much as an oxygen tank. But it’s these swings which are totally exhausting me. And they are proving very difficult to wrestle under control.

 I’m taking drugs I despise. Ones labeled poison, drugs for epilepsy which I don’t even have, and some with revolting and embarrassing drug classes like “antipsychotics”. I take drugs that contraindicate the other drugs as the benefits outweigh the risks. And still I suffer. I wait. Until the drugs work. Until I realise they’re not and try something else. All the time never knowing how much longer I have to wait until something works. 

I wish things could go back to the way they were. And I don’t understand how after 36 years of adaptively living with this, without even knowing about it, despite now looking back and seeing it there clear as day, it is now so out of control. And there seems to be very little I can do about it. 

I have bipolar 1. Rated the 2nd worst mental health condition behind only schizophrenia due to being notoriously hard to treat and having a high mortality rate. And I fucking hate it. 

I hate suddenly having a disease like this. I hate being told I have an illness. I hate being told “you don’t realise how sick you are” I hate how it is totally controlling my life at the moment. I hate how I don’t know what I’m going to wake up like the next day. I hate how I’m becoming antisocial, how things I used to find fun I can’t plan for anymore because I don’t know what the next 5 minutes will bring, let alone the next week or two. And I hate how I’ve given up on even wanting to do those things at the moment because it is just easier. I hate how many medical bills we have. I hate that my husband had to leave his job because of this. I hate how many times I have to go to the doctor. I hate the support groups at the hospital. I hate how so many things in my future will no longer be doable.  

And right now, I hate being me. 

So please, I don’t need to be told how strong I am. I don’t want people to say keep smiling. Because right now, those things only annoy me. But I do want you to wait for me. To forgive me if I say no to your event, or cancel plans I made.  If I don’t return your message. If I don’t pick up your call. Please understand why, instead of being offended.

I’m fighting the biggest damn fight of my life and it’s hard. But I’m worth it. 

The one about r u ok day

  
Today, in Australia, it’s R U OK day. It’s a day meant to encourage the checking up of everyone and asking are you ok? We really shouldn’t need an official day to remind us to do this but a reminder is a good thing none the less. For it is better to ask once a year than not at all. 
Of course there will be plenty of people who are ok and unfortunately plenty of people who will say they are ok even though they are not. But for some people this is an opportunity to open up to someone. To tell them that actually, they are not ok. And it really is a time to listen. To whatever is said. With no judgement. It’s not a time to give advice. It’s not a time to remind people that there are people worse off than them and it’s certainly not a time to tell them that really they have no reason to feel like that. Don’t tell them to keep smiling. Don’t remind them how strong they are. Just listen. 

  

It’s a time for compassion. For validating someone’s feelings even if you don’t understand them. Even if you can’t see why, or how they can feel like that. Because if someone is brave enough to open up about how they are really feeling then that’s what they deserve. Validation and compassion. 

 
So today I am asking all of you, whether you know me personally or not, “are you ok?” And I invite you to email me at Thesoundof2hearts@gmail.com and I promise you I will listen with compassion and validation. Without judgement or advice. Just a genuine ear to listen. To ask you, if you are ok.

 
I would also invite you, to ask someone else if they are ok. Even just one person. Even if they say yes they are. It’s an opportunity to show you care. To show them that they are worthy of someone else’s interest. To remind them that they are important. And by asking them today, they may decide its ok to tell you they’re not on some other day. A day when it does feel too hard. A day when they are sad or frustrated or angry or depressed. Or anything else. Because everyone deserves to feel that someone cares about them. And today, that person is me. Are you ok?

The one about the changed landscape. 

So today I get to come home from hospital. After 4 months, a third of a year, 17 1/2 weeks, 121 days, 2904 hours. And I am done. I don’t ever want to see the inside of a psych ward again. Except it’s likely that one day I will. But hopefully not for as long another time. And hopefully not for a while. 
And I come out to a new landscape. So many things have changed. My children are all a year older and have functioned just fine without me. I’ve lost friends I never thought I would, others have stepped up, and new ones have crept their way in. My husband no longer has a job although he is madly looking. I’m looking at a long time off work so I can continue outpatient therapy. And things will never be the same again. 

Nathan and the kids have a new understanding for all the work it takes to keep the house functioning, I’m sure that will drop off again eventually but I’m glad they now realise the effort that goes into making every day look boring and predictable. And how tiresome doing the same thing over and over only for nobody to notice is. 

I have a whole bunch of symptoms I never knew were symptoms to keep an eye on to make sure that what goes up doesn’t go up too much and the following down doesn’t go too low. Along with a whole bunch of new medications to help keep things under control. And the possibility of going back for more ECT if things don’t go as planned. It’s a scary thought that although I’m not going out with a new condition I am leaving with knowledge of one I’ve had for a long time and not realised. Things in lots of ways make more sense and in lots of ways feel overwhelming. The idea that I am now officially mentally Ill with something that can not be cured and can only be managed isn’t the greatest, but I am grateful for the chance to manage it before it takes hold of my life again. 
I leave knowing there is a greater chance that my children will develop the same condition with the same life long outlook. And I just hope that the insight I have gained about myself will help me recognise it in them and ensure that they receive the treatment they need as early on as they can get it. 

The people I used to lean on for support have changed and although in lots of ways I feel used, that I was always there for them and they couldn’t be there for me in my time of need, it won’t change who I am and the type of support I will continue to provide others.
I will always be open about what goes on, in the hope that it makes someone else feel a little less alone with what they face. It may not be the same as me but to know other people don’t lead perfect lives is sometimes all someone else needs to hear to feel better about themselves. 

So here I am, going home. Not the same person who walked in four months ago, wiser and more educated about herself, more sure of the support around her, more sure that her husband and children love her just as much as they ever have. They gave me up for such a long period of time, in the hope that I would come back better and stronger than ever before and I can assure you that is what has happened. I’ll never be as ignorant and dismissive of my own needs as I once was which in turn leads me to be a better wife, mother, daughter, sister and friend to those who have stood by me. I will never stop needing the support of family and I am lucky that I have some of the greatest I could hope for to do that for me. 

  

The only thing that is certain right now is that the woman walking out of the hospital doors this morning is not the same one who walked in here all those months ago. This storm has changed me like all the storms I’ve stood in before that. But instead of standing there getting battered by the storm I’ve taken an active role in trying to beat it. And in doing so I’ve changed my prospects, Taken charge and given myself the best hope of a positive future that I could. And I step out into my new surroundings both confident in my abilities and frightened of the unknown. 

But if there’s one thing I know I carry with me every day, it’s courage. And I’ll walk through any storm that comes along with courage by my side and know that no matter what it brings, I will handle it. I will ask for and accept help when it’s required and I’ll stand on my own two feet whenever possible.