Neonatal Mental Health Awareness Week – Day 3

Day 3

Today I’d like to share a brilliant petition set up by fellow preemie parent, and all round champion for maternal mental health, Danielle of An Ordinary Mummy and Motherhood For Change.

Like many of us Danielle didn’t get a PTSD diagnosis until her twin boys had been home for some time and it’d had started to have a significant affect on her daily life. In her own words ‘I have begun a petition with the intention of lobbying the government to offer the PTSD questionnaire at babies six and twelve month checks for all neonatal parents. We could save so many families so many years of mental ill health with one simple questionnaire. Of course there is more to be done, the postcode lottery of PTSD treatment must be addressed, EMDR isn’t offered to everyone and some are simply given anti depressants and no counselling.

Additional support needs to be provided on units and more importantly check ups for 3-6 months postnatal. The task is monumental but I truly believe that each small step can help pave the way, each story shared can break down walls of silence and build up awareness and every voice heard can help empower others to seek help and perhaps make their own shout for change. Once you are a preemie parent you are always a preemie parent. I wear my scars and my trauma like a badge of honour, it is a constant reminder that our children are miracles, that life is precious and that we are here only once and what we do to invoke change to better the lives of others and change the things which failed us are the things which truly matter.’

You can find the petition here:

Petition

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Neonatal Mental Health Awareness Week – Day 2

#NICUMHAW Day 2

I know I said yesterday that todays post would be more about my own symptoms leading up to diagnosis but, as I suspected, I did see a few (hopefully well meaning) comments yesterday that just really hammered it home to me how misunderstood Post Traumatic Stress Disorder is. So I want to clear a few thing up and hopefully give a better understanding of PTSD.

PTSD is NOT about feeling sorry for yourself. Studies have proven that trauma causes neurochemical changes and people suffering from ptsd have an altered brain anatomy and function.

PTSD will NOT be cured by thinking more positively. When you tell someone that is suffering with a proven psychiatric disorder that they just need to respond better and choose to ‘rise from the pain’ πŸ™„ all you do is make someone who is already suffering feel like shit, and show how astoundingly ignorent you are. That’s not to say I don’t think self care and reframing things in a positive way aren’t important or useful, I really do, but there is a huge difference between this and shaming people who are already deeply struggling. I know this type of analogy is used a lot but seriously, would you tell someone with 2 broken legs that they just need to get a grip, stop fannying about with their crutches that are sooo obviously just for attention anyway and go for a jog!? It’s all well and good pointing out that everyone has their struggles, and its true they do, but if you’re capable of recognising that then surely you’re capable of showing a bit of compassion to someone who is struggling too?!

PTSD is PHYSICAL. Signs of PTSD can range from flashbacks to nightmares, panic attacks to eating disorders, cognitive delays to lowered verbal memory capacity (I suffer BADLY with these last two, imagine trying to hold a conversation when it feels like all of your thoughts and ideas and words have fallen right out of your head). Teeth grinding, swallowing problems, numbness/tingling in your face/arms/legs etc, heart palpations (terrifying, this one & the numbness/tingling recently came back for me and I hate it). Gastrointestinal problems, problems with your menstrual cycle, extreme mood swings, extreme reactions, hallucinations, hypervigilance, disassociation. I could go on. I suffer/have suffered from every single one of these.

PTSD is INVASIVE. I’ve been told on numerous occasions that I just need to ‘let go of the past’ which is particularly ironic because it feels much more like it is the past that won’t let go of me. Flashbacks, anxiety attacks and any number of the other symptoms mentioned above can spring from nowhere, even on a ‘good day’ the most unexpected thing can become a trigger. Its always there, just waiting to creep up and maul you like a rabid dog, when you least expect it.

PTSD is EXHAUSTING. It’s debilitating and painful and just all consuming.

It’s also really really important we start talking about it more. Untreated post-traumatic stress disorder can have a devastating effect for both those who have the condition and their loved ones. It not only affects relationships with your family, friends and others, it can also cause more serious health problems over time and I passionately believe that a huge factor in the affect trauma has on us is the isolation it causes. We need to be encouraging people to talk, no one should be in fear of admitting they need help and support. Kindness and compassion are fundamental to recovery, without them even taking the first step towards help can seem impossible.

Neonatal Mental Health Awareness Week – Day 1

Today is day 1 of the very first Neonatal Mental Health Awareness Week. As some of you will know I was diagnosed with Post Traumatic Stress Disorder and Anxiety Disorder following Arlo’s discharge from NICU. I’ve touched on it frequently in my posts but I’ve never really talked about my PTSD in much detail before. I want to change that this week, so I’ve promised myself I’ll write a post a day for the next 7 days, and if it helps even 1 person that’s suffering, then that’ll be good enough for me.

I’ve always wanted to talk more openly about PTSD but it’s hard. I don’t think I really appreciated the stigma surrounding mental health issues until I had a breakdown and found that I couldn’t actually bring myself to tell people what was happening, I didn’t know how to explain it and I quite quickly had some negative responses too and that had a pretty awful affect on me and made it hard to open up again (talking of stigma, I’ve actually been hovering over the post button on this since 7am, its now 10am, because I’m genuinely quite frightened of the response it might get). It’s not like having most physical injuries where something significant happens, you’re hurt, and then the acute bit is over and you’re recovering. I didn’t wake up one day having a mental breakdown. It was more of a snowball of symptoms that built up and up and up, until it eventually just overwhelmed and consumed me.

Then when the fog finally start to lift a little I felt awkward, ashamed, embarrassed and detached. So many people would say things like ‘but he’s fine now’ or ‘everyone has problems, lots of people have it much worse’ and while I think they were well meaning, all it did was compound the sense of guilt and shame that I already carried and left me feeling like being broken by my own trauma was selfish and self indulgent. Plus at times my behaviour WAS embarrassing and abnormal. So I didn’t tell people. I couldn’t. I’m certain there will be friends, and even family, reading this who had or have no idea the extent of my mental health collapse, and my ongoing mental health issues. Its hardly surprising though, I didn’t realise myself at first…

I think looking back I can see early signs of a problem when Arlo was still in nicu. I became a bit obsessed with cleaning the breast pump, convinced a stray germ would eventually kill him. I threw over 100 bottles of expressed milk away because I was certain they were contaminated.

The day he came home I had a complete freak out when his outreach nurse left and we were on our own. I felt so overwhelmed by being alone with him and his various medical needs/equipment. All I could see was danger. I didn’t want people anywhere near him because I thought he’d catch a virus and die. I hated making up bottles and would throw gallons of formula away because in the second between pouring the water in and putting the lid on I’d be convinced it’d become ‘contaminated’ with germs. I think this played a huge part in my drive to get him breastfeeding, and even then I used to thoroughly wash my boobs before every feed! Ridiculous 😐

Dummies were another huge source of anxiety. One would only have to fall out of his mouth for a second and we’d take it to sterilise. I’m surprised they didn’t all melt! The number of emotional outbursts I had because I was sure he’d been given a ‘dirty’ dummy, it was ridiculous.

Around 2 months after he came home I accidentally drank from someone elses glass. A complete non event, but not in my head. I was absolutely terrified that I’d picked up a cold sore, so much so that I was too scared to kiss my own baby. I’d cuddle him but I just couldn’t kiss him. This lasted for weeks. A few times I absent-mindedly kissed his soft little head and had to put him straight in the bath. Added to that the guilt of not kissing him was horrific, it went against every instinct as his mother. He’d spent 7.5 months in a hospital cot with minimal human contact, and the vast majority of contact he had had was something painful or uncomfortable. I knew he needed as much loving physical contact as possible. I felt desperately conflicted, but I was so terrified, so overcome with fear that if I got too close to him he’d die.

These are just a few examples of my early symptoms. At this point I really didn’t realise how disordered my thinking was becoming, or how deep my anxiety ran. We’d been living in such unusual circumstances for so many months that I think I’d completely lost track of what normal was anyway. It wasn’t until things got much worse that I finally realised and started to seek out help. I’ll talk more about that tomorrow though.