Welcome to my nightmare…

I didn’t sleep last night (shocker, right). Actually, I did kind of sleep. I was so dog tired by 11pm that I decided to try going to bed like a normal person. I read for a bit and much to my relief, I fell asleep. For about 45mins.

I was awoken by the first nightmare around midnight. By half three and the fourth nightmare I had given up on the idea of sleeping. Nightmares are the part of PTSD that I don’t really talk much about. Maybe because they are an intermittent problem. Probably also because it’s not something that people (in my experience) take seriously. Responses to my attempts to discuss my nightmares have ranged from vaguely dismissive to full on belittlement.

I think when I say nightmares people hear bad dreams. You’re probably thinking of anxiety dreams (teeth falling out, failing exams, getting fired etc) or standard scary dreams (trapped somewhere, being chased, really bad person creeping around your house horror movie type stuff). Maybe you’re even imaging those childhood bad dreams that are terrifying in ways that are incredibly specific to you. All of which are horrid, but not at all debilitating. I suppose I do understand why folk say things like ‘well, they’re not real’ or ‘as soon as you wake up it’ll be gone’; that’s their experience. Oh, how I wish it were universally true.

Creepy face

PTSD nightmares are a whole other thing. They are related to trauma. For me, they often mirror my flashbacks. Sometimes they’ll get creative and go abstract. I’m trying to get some rest and my mind will just be replaying amplified versions of the most distressing moments of my life. My head is a terrible editor; it just rapidly cuts from one horrendous image to the next. All of which are graphic. Blood and dead babies are the common denominators. They’ll begin in a very realistic & upsetting fashion and degenerate into gruesome bloodbaths (sometimes literally).

Blood splatter

As I mentioned the nightmares are a sporadic problem. They almost always have a trigger. That can be a really tiny thing that I possibly didn’t even pay that much attention to until it starts becoming a pivotal detail in my dreams. It can also be a major life event. My nightmares are usually accompanied by & linked to flashbacks in my waking hours. They always come in clusters. I never have just one upsetting dream. They plague me every time I close my eyes. All of which adds up to a significant disturbance.

The torment doesn’t melt away when I regain consciousness. There’s always more to come and it is real. Every scene is drawn from my reality. I end up scared to sleep and just as scared to be awake. I can’t be alone in this because nightmares are close to the top of every PTSD symptoms list. Any psych evaluation or questionnaire will ask about them. Yet, I don’t see much discussion of the topic. I include myself in that. It’s an aspect of my mental health that I feel really uncomfortable being honest about. I don’t know exactly why we’re all so tight lipped, but I’d bet stigma plays a part.

Sleeping ly

It’s always the messy parts of mental illness that we shy away from. Anything that feels uncontrolled or dark or too close to crazy is glossed over. Those who haven’t experienced it don’t want to think about. Those of us who have don’t want to deal with judgement. Where the nightmares are concerned I think there’s also an element of feeling stupid. Kids get frightened of bad dreams. It’s hard to shake off the feeling that you should be able to handle it. Especially when that’s the message the world is giving you.

I’ve yet to discover anything that’ll chase the dreams away. Sleeping pills aren’t helpful because they make the nightmares more vivid. Thankfully they occur less frequently than they used to. Keeping quiet certainly isn’t helping. Perhaps if people knew what I was referring to when I say nightmares they would be less patronising. A little empathy can go a long way, but you have to understand someone’s experience before you can offer that.

Don’t speak…

I’ve talked about the misguided things that people say in the wake of a miscarriage. Although these things can hurt, I understand that no harm is intended. I’ve been hesitant to tackle the other side, the people who say things they know will cause pain. Try as I might I cannot understand what they gain from this. Bear with me, I’m going to do a little blog therapy.

I can’t believe this has to be said, but here goes. A person’s stance on abortion is not relevant if the have a miscarriage. After my most recent loss it was suggested that my pro choice beliefs made my devastation over the miscarriage incongruous. Actually I think they were insinuating that it was hypocritical of me to grieve the loss of a foetus when I support the right of someone else to terminate one. Let me be clear, I support each individual’s right to choose. My experiences of pregnancy and miscarriage have only strengthened my pro choice convictions. Carrying a pregnancy and giving birth is an undertaking of such enormous magnitude that it should only ever be done willingly. My desire to have a child is not in conflict with my refusal to deny others bodily autonomy. I don’t want or need an abortion, but I will fight for those who do. Using that against me at my most vulnerable moment is cruel. Choice is the operative word. I had no choice in losing my wanted pregnancies. My dead babies are not a debating point. Attempting to litigate how upset a person is permitted to be is disgusting.

Choice clouds

Equally repugnant and heartbreaking was the proffering of surprise that I would be hit so hard by a fourth miscarriage. The reasoning being that I should have expected it may happen (I did of course) and that I should have become hardened to it by now. I can’t comprehend the lack of empathy it would take to think such a thing let alone say it loud. I don’t understand how one comes to the conclusion that reliving the worst time of your life over and over would make it easier. I can’t understand how anyone would imagine that having a worst fear realised is any less awful because you knew it could happen. Forcing someone to defend their distress is cruel in a way that must be deliberate.

I also wanted to touch on a group of platitudes that are offered frequently. Variations of ‘everything happens for a reason’, ‘god moves in mysterious ways’ or ‘it’s a blessing in disguise’ are never ok. I have been repeatedly assured that good intentions lie behind these phrases and I’m calling bullshit on that. They’re just lazy and ignorant remarks. Even a moments thought would uncover how inappropriate it is force your religiosity on someone. If you somehow take comfort in believing that ‘god’ purposefully snuffs out specific unborn that’s bizarre, but your business. To impose those ideas on fragile people in the midst of trauma is wilful ignorance. It is choosing to prioritise your own comfort above that of someone who is suffering.

Blurred light

I’m incredulous that I have to say any of this. It hurts to be forced into these unnecessary conversations. These aren’t blunders, they are examples of selfish agenda pushing. There is no kind reason to pursue these topics. It’s callous & inexcusable. Don’t do it.

I give up…

The universe is determined to give me opportunities to discover social faux pas. The events of the last weeks have revealed to me a host of new things that lots of people say when one talks about miscarriage. The vast majority of these comments are very well meant, but nonetheless, have considerably missed the mark.

Being open about having had multiple miscarriages seems to unfurl two main threads of conversation. The most prolific being enquiries as to why it keeps happening and what I have done about it. I think I know why people ask these questions. Partly fear, no one wants this to happen to them. I suppose people think if they know the whys they can avoid it or fix the problem. The other side being an assumption that everything can be fixed. I understand that, we are so used to living in a world where things can be cured or treated. I know from having chronic conditions that people are often confused to learn that some things can not be corrected. In the case or recurrent miscarriage this enquiry is unhelpful for variety of reasons. Firstly miscarriage, recurrent miscarriage and infertility often fall into the category of ‘don’t know’. About half of those who suffer recurrent miscarriage are unable to find a reason after testing. I am one of those people. I have had all the standard tests and investigations to little avail. I did have some adhesions that were successfully removed and I have PCOS, but no Dr I have consulted believes that to be the cause. The short answer is, no one knows. Asking this question isn’t helpful. If a person doesn’t know, you’re just underling that difficult fact by making them explain it again. If they do, they may not want to discuss such private and sensitive information with you or anyone else.

Offshoots of this such as, Have you seen a Dr about this? You should get another opinion, My friend did such & such or surely there must be something they can do, are unwelcome. I have had four miscarriages. I have lost four children that I desperately wanted. Of course I have done everything within my power to find out why and prevent it from happening again. The suggestion that I haven’t offends me. It indicates that you think I am either stupid or careless. I understand that wasn’t the intention, but please, think before you speak. It’s also important to be aware that the NHS usually won’t begin these investigations until after a third miscarriage. Not everyone has the resources to seek private medical treatment. Anyone in that situation doesn’t need nosey salt in their wounds.

The other comments this loss has garnered are of the don’t give up variety. A lot of people have reached out to tell me there’s always hope. The have shared their own experiences of loss or struggles to conceive and assured me that miracles happens. That they eventually had their baby and it was all worth it. I know you think you are helping. I know you are trying to be kind. Let me just say this, not everyone gets a miracle. We are not all able to try again. There are limits to what the body can do, physically & emotionally. There are time constraints. Relationship constraints. Financial constraints. At this moment I don’t feel like I have another try in me. Losing another baby would destroy me. Maybe I will feel differently in the future (it would have to be the fairly near future), but I don’t think so. Facing the reality of my limitations is not weak. Recognising that I can not square this circle is not giving up.

I don’t intend this as an attack. I realise these aren’t purposeful attempts to hurt. I just want to have an open discourse. I think these confusions arise because we don’t talk about this topic enough. If you want to offer support to someone who has suffered this kind of loss it will be appreciated. Simply offering your condolences and assurances that you are available is enough. Respect that everyone grieves differently and your kindness will cherished.

 

Look back in anger…

I’m angry. So angry that it’s hard to contain. The problem is there’s no specific target for my rage. It’s a generalised, tear everything down kind of fury. There’s no release. I can’t spew my anger over unsuspecting bystanders. Keeping it in doesn’t feel like a viable solution either. Where does one put all the free floating resentment that no one is actually to blame for?

Life isn’t fair. I came to terms with that fact a long time ago. I’ve accepted a lot of bullshit. Fought crazy & illness & disability & mistreatment & loss to build some sort of something. I’ve struggled, but I’ve rolled with the punches as best I could. There’s only ever been one thing that I’ve felt I couldn’t do without. One single imperative. When you’re willing to get by without so many things, it feels so desperately unfair to be denied the thing that would make it all ok.

I watch everyone around me do the thing I cannot. Some with such ease it leaves me breathless. For others it’s a harder journey, but they reach their destination. I love those people and I love their babies, but it’s so hard to be the only one stranded.

I’m angry that I have to do this again. I’ve been tricked into hoping. Now I have to deal with the fall out. I am mad at myself for being stupid enough to believe. I resent having to submit to medical interventions. I didn’t ever want to hear someone say they can’t find a heartbeat again or look at another bloody speculum. I’m furious that I’m still bleeding and that I have to cope with all that triggers. It’s agony to be constantly reminded that my body has failed again. It’s exhausting to face the nightmares and flashbacks of all other blood. I don’t want to relive each of the worst moments of my life whilst trying to get through this one. I’m sick of blood tests and transfusions and putting on a brave face. I hate that I don’t get to opt out. I’m not strong, I just don’t have option of walking away because it’s too hard.

I don’t understand why it has to be me. Why my babies keep dying when I want them so much. Why does the universe give life to those who can’t or won’t love their children? Every time I read a horror story of abuse it feels like a personal attack. I think of all those terrified pregnant teens, the adult women who can’t feed another mouth or just never wanted to parent and I wonder why it couldn’t be me instead. I’m not angry at the individuals; everyone should have the right to choose. I’m furious at whoever or whatever makes decisions. What could I possibly have done that disqualifies me?

I see people smoking as they hold their child and I have to restrain my scream. Each impatient, inappropriate or lazy exchange between a parent & child kills me. Even the standard complaints about bring tired and tantrums make me feel like punching someone. I know I’m not being fair, but it’s like bitching about your diet to the starving. Don’t they know what a miracle they’ve created? How can they forget how much that little person needs them to do the right thing. I know it isn’t easy. Kids are exhausting and all consuming, but they’re worth it. The joy outweighs the sacrifice.

I’ve had enough therapy to know that burying your feelings is never helpful. I know I can’t dig a deep enough hole for this much emotion, but I have no idea where else to put it. I can’t lose it with every person who is rude or mildly inconveniences me. I have no desire or intention of venting on the people I love. I used to work this shit out with a scalpel. That’s no longer an option. What do I do?

Make it easy on yourself…

2019 has barely gotten going & it’s been rough already. In a matter of weeks I have lost my baby & my boyfriend, which is less than an auspicious beginning. If I sound flippant, I’m not, I’m just trying very hard to put one foot in front of the other.

The demise of my pregnancy is devastating. My relationship’s end is sad, but the right decision and that’s about all I have to say on the topic. I find myself approaching the year (and my life) alone again. Being single hasn’t ever worried me all that much. I’m definitely not scared to be that kind of alone. Childlessness on the other hand, terrifies me. What do you when you’re facing your biggest fear? I haven’t a fucking a clue.

#projectpostit

For the time being I have taken the clichéd approach of one day at a time. I’m trying not to spend every day at home in my jammies (there is however a lot of crying on the sofa). Functioning is a struggle for a multitude of reasons. Primarily, I am exhausted. I’m always tired. Add even less sleep, the effort it takes to contain my anger at life itself, the fact that I will not stop bleeding, so despite the blood transfusion my haemoglobin level continues to flag and you get extreme fatigue. Having a different emotion every 5 seconds is tiring. Battling (& often failing) to contain the tears is wearing. Breathing & washing & conversing & not screaming is all taking gargantuan effort. The truth is I’m not managing very much. I’m practising being ok with that.

Blood transfusion, Rose wine, snuggling cat, reading baby

I recommend spending time with people who don’t expect too much of you. I’m giving priority to anything that give me comfort; my little people & potatoes pretty much have that covered. Hot baths have featured heavily as has ‘fake it ’til you make it’ make up. There was one afternoon of day drinking with a lovely friend that actually helped a lot, but not something it would be wise to make a habit of. My purring cat is a godsend. I’m reading, sleeping whenever I can and endeavouring to be gentle with myself.

ly h Kerr

I have no clue how to tackle the overwhelming sense of guilt. Chipping away at how ‘not fair’ this is may well take the rest of my life. I’m focusing on the small stuff. Giving myself a pass on the growing mountain of washing, the ideas that go unpitched and being awfully rude to the person who called about my non-existent road traffic accident. I find it harder than you’d imagine to let that stuff go. Being hard on myself comes easy. i have learned that when life gets you on the ground it’s worth tackling the instinct to kick oneself whilst already down.

Sunset

Just the way I’m feeling…

A few Fridays ago, in search of positive distraction I did what I usually do when I need a pick me up, spent time with a little one. Specifically my baby nephew. He’s on the verge of turning one so my sis & I thought it was time he checked out the science centre.

The boy loved being able to crawl around and touch everything. Obviously he didn’t understand them, but he still enjoyed playing with the exhibits. I of course was right in thinking my joyful little man would lift my mood & my sister loved everything her boy does. Thus, a successful day out was had.

I was hoping that looking like a functioning human being would help me feel like one. I’m not sure it really worked, but I did like this outfit. Perhaps it’ll work some magic me on me another day.

ly h Kerr mirror selfie

Dress – Boohoo

Tights – Snag Tights

A simple black shirt dress is perfect for pairing with brights tights (& accessories). I am a new devotee of snag tights; they fit perfectly, don’t fall down & look lush. The dress is less perfect. I had to add a vest as the buttons over my bust gaped terribly. I had already sized up and if I go up again to accommodate my boobs it will be too big everywhere else. I always say size with up Boohoo, but to be honest I’m getting a bit sick of their crap sizing. I’m a 20/22 everywhere, but struggle to get into a lot of Boohoo 24s. That’s not good enough. Sort it out.

A few years ago when my niece was home from Australia we took a picture in the big mirror wall at the science centre. It was a cracker. We clearly had to get one with the boy. It’s another beauty. I just need one with my middle nephew and I’ll have the full set!

Family mirror selfie

A central part of your mind’s landscape…

Are you respectful? Do you try not to hurt other people’s feelings? How often do you reassure friends that they have done a great job, tell them not to be so hard on themselves? Almost everyone manages these things & more. Most of us know how treat others kindly. We’re all delighted to be our loved one’s cheer leaders. So why do we find it so hard to be in our own corners?

For a long time I thought my negative self talk was a rare thing. I was battling severe mental illness & I assumed the cruel way I addressed myself was justified. I didn’t really speak about that abusive voice in my head outside of therapy. I did CBT, compassionate mind training, EMDR and a variety of other therapy techniques. Regardless, I still talk to myself in a manner that I would not dream of confronting others. Yes, this is part of my mental health problems, but I’m realising it’s also really common.

I am not alone in berating myself. In fact, I think to some degree or another, we all do it. My problem is keeping it under control. I can spiral from ‘that was daft’ to ‘I’m utterly useless’ in a flash. I am aware that haranguing myself in this way is damaging. I know it plays into other aspects of my poor mental health; it lowers my self esteem, leads to second guessing & most dangerously makes me feel like I should punish my incompetence.

Lately, I have noticed a lot of public discussion on this topic. It has become clear that women in particular fall prey to negative self talk. We undermine ourselves. We judge ourselves not good enough. I’m wondering why.

Is it a side effect of our culture? There’s a constant onslaught of just keep grinding messages. Everyone has a side gig. Many women are trying to juggle careers & motherhood. We’re all trying to fulfil multiple roles. All the while being bombarded by media images of perfection. Is this why we fall short in our own estimations?

I’m not superwoman. None of us are. I have learned to cope with lots of aspects of mental & physical illness. This one I cannot seem to conquer. My first thought in the face of almost every problem is ‘this is my fault’. Although not in such polite terms. I can take a part the situation logically and prove that I am not always to blame. Intellectually I can believe that I’m not the cause of every misfortune, but I can’t feel it.

As I’ve said I have received significant psychological intervention. I know all theory behind the skills that are supposed to combat these thoughts. Somehow, I remain immune to the entirety of it. So, I ask you, what do you when that horrid internal voice pipes up? I’m really asking & I am absolutely open to suggestions.

The dog days are done…

It’s been a rough couple of weeks. Extra illness, extra stress & very little sleep have taken a toll. My mood has taken a nose dive. I’m battling a fairly substantial wave of anxiety & the urge to just hole up at home.

I am fighting, though. One of the things keeping me going is how far I’ve come. These lows will probably always hit, but it helps to know things are not as bad as they once were. On days like this reading my own dark words shine a tiny light through today’s depressive fog.

The blood jet is poetry, ly h Kerr

I’m hoping some sleep & resolving some of the stress inducers will alleviate this bout of blue. In the mean time I’ll be digging deep in my chest of resources to keep myself focused on the light.

Bronan Kerr

Rest assured this boy is always looking after me.

You’re gonna carry that weight a long time…

I had my bloods done this week. I have blood taken most weeks. This time I had a new nurse. She asked about my scars (nicely). I replied self harm. She exhaled sympathetically and said ‘it certainly left its mark’. Ain’t that the truth.

There’s the obvious scars all over my skin. The toll on my body that you can read about in my medical records and the indelible marks on my mind. Then the more I thought about it the clearer I saw that self harm has permeated throughout my life. I have so many habits, rules & thoughts that all loop back to a time when I was routinely hurting myself. The depth of it is both a revelation and strikingly obvious. Which is confusing, so I’m just going to unpack it here. Someone once told me they read my writing because it’s the best way to work out what I’m actually thinking. That’s often why I write it. So, excuse me if I explore my insides with an audience.

There are seemingly trivial things that at first glance appear to be just casual preferences. I only buy dark bedsheets. All my bedding is black or red or purple. Sure, I like those colours, but really I switched to exclusively dark tones because you can’t get blood stains out of the lighter ones. You also can’t see the stains between washing. I realise how gross that sounds, but when you always have open wounds, your sheets are continuously bloody. You get used to it. Ditto all of the above for dark coloured jammies. Along similar lines is my constant manicure. I’ve always liked to paint my nails. However, I didn’t need to keep my nails painted at all times until cutting came along. If you didn’t know, it can be really hard to get blood out from under finger nails. You can scrub for hours and still see red. Covering the tell tale crimson tinge became routine. My love of shiny black polish on my toes has the same origins. My toes don’t see a lot of blood these days, but necessity has grown into habit. My cardigan collection also has secrets origins. I have a million cardigans, shrugs etc. Whenever I buy any outfit I immediately run through what cover up I could match with it. I don’t even keep my scars covered anymore, but I still find myself buying items to hide under. Again, precaution has become ingrained.

Bed

The tentacles extend further. Years of self harm has skewed my perspective on a number of things. For instance, if you accidentally injure yourself I am the best and worst person to ask for help. I’ll definitely give top notch wound care advice. I know what dressing you need and how to clean every gash. I’ll also almost always think you’re making a fuss of nothing. I’ll probably think you can manage without medical assistance unless your leg is hanging off. When you cry or complain about the pain, I will be outwardly kind, but inside, I think you should cowboy up. Your call an ambulance is my stick a plaster on it. I know I’m wrong, but that’s how my mind works. Furthermore any accidental injury that anyone ever tells me about will arouse my suspicion. Same deal for most scars. I spent years lying about cuts and breaks and burns. I have concocted excuses of every kind. No matter how plausible your story I will have a moments doubt. It’s no reflection on you. I know you didn’t do it to yourself. It’s just that I also know that people lie. I lied. To everyone. Repeatedly. Habitually. For a very long time. It warped my thought process. Oh and if I have an accident I spend a lot of time carefully crafting how I will explain it. My head’s first assumption is that everyone shares my doubts. I’m always scared that someone will think I’ve fallen off the recovery wagon. Logic kicks in and throws the crazy out, but there’s a delay.

Black toe nails & tattoos

I never answer the door in short sleeves. Everyone knows they can’t just drop by my house. In the past I didn’t know if myself or my home would be fit for visitors. The anxiety of unexpected guests lives on even if the pools of blood do not. My first aid tin is always extensively stocked. I still can’t go anywhere without a cover up. My days of hiding every scar are gone, but my brain needs to know I have the option.

Blood transfusion

Watching cinematic portrayals of gore annoys the hell out me. I know that slash wouldn’t produce so much blood. Blood doesn’t stay wet that long. Cutting your wrists is nowhere as easy as films would have you believe. Cold water and salt is how you remove a blood stain. Rotting blood smells a bit fishy. A troponin test will determine if you’re having an actual heart attack. Stitches in the stomach don’t really hurt, don’t bother with local. The body takes 4-6 weeks to replace the red cells when blood is lost. Drs will usually insist on an transfusion when haemoglobin drops below 7 g/dl. Learning the topology of Langer’s lines allows for cuts to be made in the correct direction to reduce scarring. Inadine patches will prevent infection. Anti bacterial gel stops scars from itching. Scalpel blades can be bought in art stores. Ice can burn. Arterial blood pulses. My brain clings to all of this and more. Information, dictums & routines that no longer serve purpose, but retain a hold. That nurse was more right than she could ever imagine. Yup, self harm leaves one hell of a mark.

Dear Baby…

Dear Baby,

You’re not a baby anymore. Or you wouldn’t be. Today would have been your 18th birthday. I’ve been thinking a lot about all the things you could have been. I’ll never know what your talents are. What you loved & hated will always be a mystery. Our life together will forever be unknown. I’ve watched so many others mark the milestones in their children’s lives & my thoughts invariably turn to you. I’m not sure I’ll ever get over the blanks.

I have dreamt of every minute of your life. Waking from those beautiful fantasies feels like a stab in the heart. Every single time. I hope those dreams are snippets of how our life would have been. I don’t want to think of us as anything other than happy.

So, today you’d be a man. I’m sure you would be wonderful. The kind of person I’d be proud to have raised. I’ll always be proud regardless. Proud that my blood ran in your veins, thankful that your heart beat in me & grateful that we had any time at all.

Big love,

Always,

Mum.

Xx