I want to write this feeling down. Record it so that I can remember it. It needs to be cherished.
I am lying in bed listening to a investigative murder podcast.
Rose is cuddled up in my arms. She reaches out, one paw usually touching me.
The light is on outside the door and I can hear Tevita sitting at the desk, tapping away, working late.
My house is full because my sister and her kids are staying over.
I feel safe and relaxed. Good feelings washing over me as I zone in and out.
Soon I will fall asleep. Surrounded by family in the big busy house I always dreamed of. Protected, loved and happy.
It’s a good night. It’s almost a shame to fall asleep. I am lucky and I’m well enough to know it.
I haven’t been in here much. I’ve been trying to write, but I’ve just felt totally unable. Nothing tragic had happened. Nothing at all has happened. I’d like to use the old phrase that the spirit is willing but the flesh is weak. Turns out though the flesh and spirit are both so tired that every little thing I used to love is now too much effort.
At the start of having fibromyalgia I felt so relieved. I had my answer. I wasn’t alone. I got proactive. I joined a support group. I talked to other sufferers. I felt hopeful.
But then I spent three days in so much pain I couldn’t think. There was no relief except sleep. It started happening more and more. Now having the reason was worse. It became a curse to know that there was nothing I could do to relieve the pain. That this would happen on and off for the rest of my life. I suffered a week long flare up. And then another one. All I could do was sleep, wake up for toilet breaks and water and then fall asleep again. My skin itched and burned. My bones aches. My muscles spasmed or cramped up. I was hit with migraine after migraine. And it won’t ever stop.
So all my energy has been siphoned from me. Mentally I’m struggling. I feel alone and isolated. I’m looking down the barrel of a lifetime of this and I just can’t even process that.
I can’t work. I can’t play with my kids. I can’t think straight. I can hardly remember who I am anymore.
So right now I don’t feel like writing. I feel like sleeping. Because when I’m dreaming I can do anything. And there is no pain.
Yeah you read that write (haha).
I tried last year to write one and I liked it, I had fun yadda yadda. But trying to write a piece of fiction with plot, characters and narrative traction is just not gonna happen with my current mental state. So move over Diary of Wimpy Kid, cos here comes one for the grown ups. What’s that you say? An excerpt? Why I really couldn’t, ok then, if you insist! I mean I know you probably didn’t, but I like it better my way.
Sometimes I wonder how I would appear in a court room (it’s only a matter of time).
Like not on what charge, that’s the beauty of being me, I don’t worry about the big stuff. But how people would see me. I have finally settled on charismatic and witty with the power to rip someone’s head off with my intellect.
We’re talking me, on my best day. It’s a good mix.
Step 1: Make the jury laugh and warm up the room (my life is one long comedy festival).
Step 2: Tear apart the slimy lawyer.
Step 3: Saunter out of the court room after slapping the witness box and announcing ‘case closed’.
Step 4: Probably go to jail.
Do you love it already? Cos I do and that’s all that really matters. It’s my book and it’s keeping me from pulling out all my toe nails. Besides, my motto is Do The Thing. Do it now. Life is short or bug arse long depending on your current mindset. You may as well spend it doing entertaining things. Cross off the bucket list now. Cos tomorrow we might all blow up. Or melt down. I mean, it depends on what happens first. Whether a world leader presses the big red button or the planet boils. Either way, grab a glass of wine, decapitate a butterfly, paint that picture, do a cross stitch with all 6 strands of cotton. LIVE. It’s kinda what we’re here for.
Last night I was suffering a fairly standard bout of painsomnia (just like insomnia, but caused by pain) which is a lovely new feature of Fibromyalgia for me. It’s also hot as hell here in Aus and didn’t cool down until 2am. I know, cos I was still awake when it happened. God dammit.
Aaaaaanyway, I was listening to one of my fave podcasts, Terrible, Thanks For Asking and Nora was doing an episode called Dear Grown-Ups which really touched a nerve. Basically a whole heaps of listeners sent in questions they wish adults had asked them as kids. Not just mums and dads, but other adults. In my case of course what hit me in the chest like a train was the wish of one listener for anyone to have reached out and just said simply, what’s going on at home is not normal. Your mum has a drinking problem and we’re here for you. I didn’t need a big intervention (they never work) or for everyone to march in with a brass band and make a big deal. But if someone had of looked at me instead of her and said it’s going to be ok, that would have meant the world. For them to say ‘hey talk to me if you need to’. Well, I did tear up then.
The other thing that came through repeatedly was adults wishing they had known that they were loved NO MATTER WHAT as children. Really known it. Because it was said out loud to them. So I sat down right then and wrote my son and daughter letters. Simple words, saying very clearly that they were loved unconditionally. No matter what they say or do, I will love them. When I’m yelling, I will love them. And they don’t have to do anything for that love. They don’t have to get awesome grades, or have the most friends, or be the best at sports. I’m already proud of them. I think they’re wonderful little humans. I will just love them. As they are. Forever. Because I’m their mum. Then we read them together this morning and talked about it a little bit. They can keep those letters and read them whenever they need to. Because we all need reminders.
I’m reminding myself not to take for granted that the people around me know these things. Especially children. I have to remember that they’re really sensitive. They see and hear more than we realize. They can pick up on emotions and energy we think we’re doing a great job of covering up. Newsflash? We’re not. That’s ok. But I might as well tell them why. Because I remember thinking as a child that every bad mood and every tear my mother shed was somehow my fault. It wasn’t and I know that now. Grown up lives are a huge juggling act and not many of us can juggle. So I tell my kids, I’m crying because the door fell off in the lounge room, or my pay didn’t come through on time or I burnt dinner and it was just one damn thing too much today. And yeah I yelled and did a bit of swearing, because it sucks. But I’ll be ok, none of this is on you.
Oh, and I love you.
Every single day.
No matter what.
Our new house has a full length mirror and tonight I looked at myself. Like took off my dress and just really looked. Of course at first I saw all my flaws. My fat belly, my dimpled legs, my bingo wings. But then I saw that I stand a cute way, I have strong legs and beautiful tattoo’s. I like my hair this short and it’s natural colour.
Yeah there’s stuff to work on. Of course there is. But I can still like me the way I am now. I can appreciate this body and everything it does to keep me up and moving. I can even look at it and say hey you, I’ve hated on you for long enough. You are amazing. I will look after you, I deserve to feel beautiful.
On the way to bed I walked out to my husband, without putting my dress back on, comfortable for once. Content. Hell, even happy. He yelled at me and hurt me. His disgust was louder than his words. I started to cry. I felt so deflated. Like I’d taken a big step forward and been shoved backwards harder than I deserved.
But I can still be happy. Even if tonight we sleep in separate rooms. I can still like me. I can love the skin I’m in. No one can take that away from me. Not if I’m resilient enough not to let them.
Be brave. Love yourself. The world looks better from here.
It’s hard to explain what it feels like to flirt with death. I guess when you can’t feel anything it’s the only thing that makes you feel something. And even the worst something is better than nothing at all.
I know how fast I need to be driving to ensure a fatal collision with a tree. I know how high a building needs to be to make it a certainty that if I step off I’ll be gone. I know how fast a train needs to be going so that if I throw myself in front of it I’ll die instantly. I haven’t yet figured out exactly how many pills I need to take to make it a sure thing, evidenced by the fact that I’m still here.
Sometimes when I’m standing numbed in a crowd the only thing that can snap me into the moment is the heart pounding temptation to step into traffic. To just let go and give up. To finally be done.
Because how long do you think I can fight my own brain? How long can I be passed from one doctor to the next and the next and the next and slowly realize that none of them know how to help me? That their useless words comfort neither of us. Mental illness is the biggest field I know of that has the least answers and I’m so tired of it. The uncertainty. The endless not knowing. The unfixableness of me.
I keep fighting. I stay. For my loved ones. For my family. For my children. For you, reading this and looking for your own answers.
I will rise out of this darkness again, I hope. In the meantime I pray for something to take my pain. I clutch my pillow tight and I hold on. I wait. For that lost piece of me to return. All the while knowing I’ll have to do it again and again with nothing to ease me. Nothing to gentle this battle. No peacekeeper coming to show me my worth or a cure to wait for.
Just me. Curled tightly in this bed. Holding on. Waiting for a reason. Flirting with death, while her enticing embrace laps gently at the edge of my lonely refuge and the temptation grows.
So I often have dreams that leave me shaking, but this has been the worst. This one broke my heart all over again.
(Trigger warning for mums who’ve lost bubs)
Last night I dreamed I woke up with horrible cramps in my stomach. I was panicked and sweating and suddenly a baby was born. I had no idea I’d been pregnant. She was so early and we thought she was still born. Then she took a shuddering breath and we wrapped her up and drove like the world was ending to the hospital.
They wouldn’t let me in the room while they treated her, but when they finally did she was pink and breathing and totally perfect. Tiny, but beautiful and oh so very mine. In the way of dreams she was already able to look at me and I fell in love immediately. I felt again the way I did when my other babies were born. As though my heart had filled up suddenly and grown too big for my body. I was even able to hold her gently against my skin in the hope it would increase her chances. I named her Hope Josef and prayed that she would be ok.
We fell asleep in a rocking chair in the premie ICU. When I woke up she was so still. I could feel the wrongness of it. I began to scream and was swamped by nurses and a doctors, but it was too late. They ripped her from my pleading arms and then turned back to me with the truth written all over their faces.
I collapsed. I couldn’t breathe for screaming. Husband tried to wrap his arms around me but I couldn’t stand to be touched. They wanted to put me in the psych ward. So I ran. I ran and ran and ran. I ran so far I couldn’t find my way back.
I woke up breathless and my arms felt so heavy, like they used to when I fell asleep with my babies in my arms. I was crying.
Now, hours later I’m still feeling so out of it. Sadness has settled down onto me like a second skin. Is my brain trying to finally process the miscarriage we had years ago? Am I haunted by the baby I almost had? Or by the one I might have next?
And when husband starts asking me for another baby again, how will I tell him I’ve seen where that road leads? How can I possibly explain that I’ve lost Hope already?