OCD the fight between two minds
I guess you could say I’ve always been a pretty anxious person, so much so that I was more likely to be predisposed to this horrific illness. In fact my fingers shake as I type these words and my mind releases a flood of fears I think of the judgment I may receive in admitting these things. The only way I can really describe my OCD to someone who doesn’t have it, is it’s like an itch that begs to be scratched, the more you ignore it the louder it becomes… I also know something else that holds a far greater and beautiful truth.. there is such freedom in the telling.
Listen to the song she recorded together with Pixie Storm or read her poem at the bottom of this page.
This story may upset you or bring up feelings that can be quite uncomfortable. Angela’s story is real and very honest. We are proud she has shared it here but if this story has upset you in any way, please know there is support out there to get through this. Just like Angela, you can access help. Here are some key support services available to you.
So here is my story
When I had my baby boy Ezra it was blissful, the birth went well and I was overwhelmed with love and happiness. He was born perfect, but tested coombes positive, so he was extremely jaundiced and quite unwell.. He battled on and recovered in just over a week. We overcame that hurdle and took him home, things were hard he had terrible colic and barely slept for that an hour at a time.. I was running on empty.. and had 4 other children I needed to be present for.. By the time he was 6 weeks old he had almost lost his thumb to a savage staph infection the wrong antibiotics were given, sending him to hospital on IV, he was one sick little boy.
Ten days later, I got back home with him that’s the first time I really recall when things started to really ramp up.. I was unable to sleep at night because I would constantly be checking on him in his bassinet, through the flynet on the sides, touching him over and over again to feel his breath.. Each time I’d check I would get some small relief from the thoughts.. My legs were torn apart with scratches from the constant anxiety.. My ears scabbed over from pulling at them trying to numb my emotional pain by feeling physical instead.. There would always be doubt overpowering my mind, telling me he wasn’t safe, I had to protect him. Horrible thoughts of the bassinet falling off its wheels and toppling over, or he was going to suffocate if the lace hood falls into his cot , he will swallow his own tongue, get stuck down the side the tiny crack, the fan would blow its cover and land in his cot.. Horrible thoughts telling me that I’ve had 5 babies, one out of 5 could easily mean this one is going to be taken away from me. There was no stopping the thoughts so I checked and checked which would only relieve the anxiety temporarily. My next move was to try to remove what I though was the risk by removing him from his bassinet and into a co-sleeper in the middle of our bed.. But that still wasn’t enough… What if the light on top set fire to it? What if he rolls into the side and can’t breathe.. There was always a but or a what if in every scenario I constantly checked if he was breathing at least every 20 minutes, when I would try to resist checking and try to sleep it would always be “Just one more time in case it’s the one time I don’t check that I will find him gone.” I had started to obsess over the doubt about the co-sleeper being safe too, then no mattress at all was safe. They were objects I couldn’t bare to look at. I remember my stomach dropping every time he needed to sleep. So my next thought was “Right.. there is no choice we will have to sleep on the lounge room floor, lay a blanket down and I’ll hold him in my arms with pillows supporting my back.” I was positive if I didn’t do these things something would most certainly happen to him! Several weeks of no sleep and debilitating anxiety I started to become confused agitated, depressed, unable to cope, angry, destroying relationships with people I loved.. I was drowning, I was lost.. All I thought about was how many different ways my beautiful boy could die.. Then ruminate over and over in my mind that noone can give me 100% proof that it wasn’t going to happen, so I must prevent it at all costs even if it meant my sanity. The fear of uncertainty starting taking over my life in the most horrible ways, the OCD latching onto to anything I care about. It was so slippery. I felt scared to live because of what I could lose, wasting away my days living in fear of any kind of uncertainty instead of enjoying the present.
Mother’s group
I joined a mother’s group that was especially for mums with anxiety or postnatal. I felt really comfortable there, but in my needing to search for reassurance, I began to tell the coordinator how anxious I was feeling about something happening to him and not knowing what I would do.. So she organised an infant first aid course for us mums to do to relieve any anxiety we may be having.. having that knowledge and skill taught to us was a good thing! She knew it may help relieve some of my concerns and relentless anxiety and it did.. But only briefly.. You see, that’s the thing with OCD it won’t take no for an answer. It feeds and thrives on your anxiety and puts endless doubt in your head.. And the more you give in by relief seeking, in my case the checking, the stronger it becomes. It survives by you completing the compulsion.
So many buts and what if’s.. My brain had a bully in its head who was all I could hear. I, never in a million years, was prepared for what was about to take place just 5 days after that first aid course.
Ezra and I would sleep on the floor every night I would watch TV for hours on end just so I could keep checking on him over and over again, often screaming and grabbing at him trying to wake him up thinking he had stopped breathing. One night the intrusive thoughts were particularly bad.. They were telling me he was rolling on his face, or under the TV cabinet or I would roll on him.. Spiders would bite him or I might hurt him.. Then at 2am my mind produced a horrific image, of what I thought was real.. I picked him up and he looked like he was blue and lifeless, screaming out for help I then started performing CPR on my precious perfectly healthy boy, remembering in that moment of trying to “revive” him everything in detail that I had learnt at the course.. It wasn’t until I felt his little nose in my mouth and heard his little cry that I realised what I was doing. I howled for over 3 hours that night the feeling I had felt was a grief I couldn’t explain. And with that grief came confusion. How did I see him like that? When he was soundly asleep? Why was I doing what I was taught to my alive baby just days after I’d learnt it? The guilt was eating me alive and I was becoming worse by the minute. My actions could have bloody killed him.
From then on I started to have more and more frequent images of him lifeless or blue, and there was barely a night I got a break from the intrusive thoughts, it was horrific. I was grieving a loss every night for something that wasn’t real but to me it was real as there couldn’t be any other explanation? My pa and then there was the guilt and sadness I felt for all the people that HAD lost a child or loved one. I had no idea what was happening to me but I knew I needed help fast. The day that sealed the deal was while we were down holidaying down in Augusta I had my 9 year old daughter and my baby boy all sleeping in the annex on a mattress so my distress was through the roof! Around 12pm that night my poor daughter witnessed some of the true horrors of this disorder. I produced an image in my mind and saw him stuck down the side of the annex.. He wasn’t breathing I grabbed him in my arms and was screaming for my daughter to turn on the lights, she was crying as I held her brother screaming trying to wake him up yelling “He’s not breathing” while she cried and cried helplessly trying to tell me that his eyes were open and to stop, “You’re scaring me mum,” she said. That moment is one thing I can’t seem to be able to forgive myself for.. She’s only 9 how horrific that must have been for her! She still is so confused by it all and it is so hard to explain it to her. By the following Monday morning, with the support of my child health nurse I went back to my GP in a state of shock and confusion. Which I barely remember now, I was completely gone. I was put on a referral and marked as risk of harm to baby EXTREME… that one word broke my heart. I would never mean to hurt my baby boy. But I could have killed him, they needed to keep him safe and to help me, I was told he would have to be separated from me and I had to agree to those terms. I was going to be separated from him the first time in his life. Two hours later I was taken to the Fiona Stanley Mother and Baby Unit where I thought they’d tell me its nightmares, postnatal depression or that I just needed some sleep. But boy was I so wrong.
Mother Baby Unit
The first night there Ezra was not allowed to sleep in my room, he had to go in a cot in the nursery. I remember the hallway feeling like it was miles and miles long from my room, I called it the hall of despair.. They said I needed sleep.. But sleep didn’t happen at all, I roamed the hallways all night up around every 10-15 mins begging to check him and having panic attacks when having to walk out again. I couldn’t just look at him. I needed to touch.. But they wouldn’t allow that so I would cry and beg for them to do it, they used to comply for a while but there was only short lived relief, it was actually feeding the OCD by giving in to all the urges. I contemplated suicide that night. I did not understand what was happening to me, all I could think of was, the kids are better off. Craig is better off, I didn’t want to be stuck in this nightmare I couldn’t wake up from!
My whole personality had changed. I didn’t know who I was anymore. I’d spend my days folding white towels over and over again until they looked ‘just right.’ All to try and soothe the unbearable anxiety of being away from my son and children in such unfamiliar territory. But they were never going to look right so I would just repeat the compulsion over and over again. Never really satisfied with the outcome.
I’d become a prisoner in my own mind. But soon enough I was seen by a team of psychiatrists and that’s when I was diagnosed with this severe form of OCD, which they said had been hanging around like a volcano ready to erupt. They told me I had acted out on my images because even when I was asleep my brain was still anxious, I was hypervigilant, and extremely depressed and anxious. I began extreme amounts of medication, intense therapy with a clinical psychologist, the team of psychiatrists brilliant nurses and doctors. The first month in the unit I spent all my time doubting the diagnosis constantly searching to see if I could find just one other person that may have done these things, seen them. Acted out on them, trying to convince myself that it could be something else. But the searching in itself was also the OCD, obsessional doubt, another sneaky feature of this madness. Even if I had found what I was searching for, it still wouldn’t be enough. After finally accepting it, I could now finally start to challenge it.
The most difficult thing I’ve EVER had to face
If anything about OCD I can tell you, it doesn’t just burden you, it tortures you, I can honestly say I wouldn’t have slept more than 2 hours a night in the whole 3 months I spent in the unit. The uncontrollable urge to check, horrible images and the depression, confusion, doubt, grief raging through my whole being. No matter what sleep medication they tried it all failed the OCD was just too powerful. I was battling against something that didn’t make sense. Still doesn’t make sense.
But everyday I got up, got my baby and gave him all my time and love in between doing hours and hours of psychotherapy, exposure and response therapy and a lot of mindfulness to control the distress. I made friends for life in the unit each one of us all fighting our own private battle. We seemed to help keep each other grounded. I laughed, joked around, screamed in frustration. Some days I would curl up into a ball and cry so hard I could barely breathe. But going through with all these emotions, there was always a caring beautiful person or staff member to help pull me through getting me back up and try again. Another 8 weeks on, Ezra was finally moved back into my room under super surveillance 24/7 for the first few nights. Taking a pee was pretty awkward! But this meant progress, so none of it mattered. I would start pushing myself to the limits, exposing myself to the fear a bit at a time there was no other way around it I had to face it head on, even if it broke me. I needed to get home with my family, be a mum to my children, beat it for them to show them nothing can defeat you unless you let it. Besides, I had beat it every time I had a good day, I beat it every time I didn’t give in to a compulsion and I beat it every time I didn’t grab a knife to end myself. That is my exact representation of how it felt just to get through each day was a conquest in itself.
At home now has been hard. I still can’t leave the room while Ezra sleeps, I’m still checking, reassurance seeking, touching but I’m trying so hard to delay as much as I can till my distress goes down. There are a lot of triggers that can set me off and OCD is a sneaky little bugger it can pop up or latch onto new things at any given moment and that is terrifying to me. I still haven’t managed to grasp the concept that I can’t get rid of the thoughts, I have to just learn to sit with them until the distress slowly reduces. And it always does. To a degree anyway. But OCD is a monster. It latches on to anything or anyone you care about there is no set variety on what it chooses to torture you with. The therapists would often tell me, “Refuse to act on a compulsion(checking) and it will die of inaction.” I’m still working so hard on that.
I’m on heavy amounts of medication and still in therapy and there’s a long road ahead. But my God have I learnt so much. The freedom in all this I believe has been in learning to be awake to my own illness and move it into the light. It’s okay to be anxious some days. To feel like all I’m doing is just getting through the motions of every day life, and caring for my children instead of beating myself up about it in sequences of three hahah, or orderly towels haha…
There is so much more to my story but I will leave it at that as some of things that occurred during this time I can no longer bear to type, so much suffering for my whole family .
Victory is in the little battles, and I have no idea what someone else’s battles may be, but never give up. My eyes have the biggest darkest circles underneath, my mind is exhausted and my heart is in pieces but I can’t and won’t let this bastard destroy my life. I have to rule my own mind or it will rule me.
If this story has upset you in any way, please know there is support out there to get through this. Just like Angela, you can access help. Here are some key support services available to you.
Angela’s poem
When your baby is born
Are they everything you’ve wanted and even more?
Do you feel a special feeling like never before?
Do you hold them, do you love them, do you cherish every little noise they make?
Are you trying to see?
Why everything’s not the way it’s supposed to be?
You feel further than nothing you wish you could be?
And you can’t explain the sadness that washes over you like a blanket that only you can see…
So you hide ..
You try to run from all your pain,
You shut the blinds,
So nobody thinks your home again, everything’s fine..
It’s just a little passing phase ..
But there’s a weight on your shoulders that just won’t subside,
It won’t subside..
Do you close your eyes?
Do you hope and pray to leave this life behind?
Is your husband on the couch again,
he can’t hear your cries,
Is the baby lying next to you, but all you feel is numbness and so cold inside ..
So I bet.. you just keep on whispering all your pain..
You shut your eyes, you’re not supposed to feel this way?
But then in spite of all the darkness you see..
You have the strength to know that this is not the way it has to be.
You’ve hit the wall..
Nothing’s really making much sense anymore, but then you find people you’ve not met before..
They don’t judge you on your sadness, or the weight on your shoulders that’s too hard to fight.. so hard to fight
They see both sides.. the depression and the light,
The beauty you hold inside….
And they’ll hold your hand and tell you that you’re not alone,
And you’re gonna feel like home again…
You open your eyes,
You look at your little babies with such delight,
You’ve all been pathing your way through to the other side..
And despite of all your challenges there’s a now a weight on your shoulders you don’t have to hide.. don’t have to hide