There’s some light, think you need it…

I knew Mother’s Day was going to be tough this year. Since I always over think every little thing, I did spend some time dwelling on that in the run up to Sunday. Occasionally my inability to switch my thoughts off serves me well, this was just such an instance.

It didn’t change how sad I felt, but I did stumble upon a new strategy. Simply put, I’m going to try my damnedest to have more fun. My life is not really all that easy (who’s is?). There’s a lot of pain, exhaustion, stress & large scale disappointment. None of which I can control. I’ve had to make some huge adjustments in my life expectations this year and that is, well, a process. I can’t change the fundamentals of my situation. I can let go a little bit. I can allow myself to please just me more of the time and I am going to.

Glasgow new beginning

I’m going to date. For fun, god help me. I’m not seeking a soul mate or partner. The aim is merely to find some amusing people I can do enjoyable things with. Hopefully without anyone making too many demands. I’m reviewing all my filed away lists of things I’ve always wanted to do and bloody well jumping on anything that is actually doable. Efforts will be made to ditch the guilt. I’m going to say more no’s to the things I do for the benefits of others that cut me in two. Plus a lot more yes’s to anything & everything that makes me feel good. To hell with the rules or convention. Life is going to fuck me regardless, I might as well squeeze as out as much glee as I can along the way.

With that in mind I began my week with a jaunt to Edinburgh to see my favourite man. Friends who will let you say anything and always leave you feeling better than they found you are magnificent. So, I soaked up too many glasses wine & just enough of his loveliness to give me a major boost. I followed up with the an almost perfect day at the farm. Watching my baby nephew discover the world is a truly beautiful experience. The tiny goats were also worth the trip.

ly h Kerr, Castle st, empty glassesBuchanan st, Pygmy goat, baba & a chicken

I feel like I’ve been hit by a truck now. It’s going to take some recovery days to get back to ‘normal’. My ratio of doing to resting isn’t what I’d hope for. I’m giving myself permission to use some of those good days for pure frivolity.

ly h Kerr

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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

Lonely hearts club band…

Miscarriage is lonely. When it happens you’re on your own. No matter how much support you have it’s still just your body failing. Your dream dying. Even if you have a loving partner who shared that dream, they’re not bleeding. Their body isn’t an empty husk. Yes, I know this isn’t necessarily true, but believe me, it’s how it feels.

That sensation continues. The loss is isolating. For all the reasons we’re starting to talk about and for others that will surprise you when you thought you were ok. It is an uncomfortable topic. No one really wants to talk about your unsuccessful pregnancies. Often most people in your life don’t even know about them. Those that do will forget the dates & details. That’s not a complaint, just fact. Your baby wasn’t real to them. It’s hard to feel anything about a life that never tangibly existed; your baby only really lived in your world. That’s not to say your people don’t care, they do. Perhaps they just don’t want to upset you. Or they genuinely don’t have the words. Time goes by. Life is lived. The only evidence of your loss is an absence. But the missing party was never there to anyone other than you. It’s a crime without a witness, but it isn’t victimless.

To a certain extent you adapt. You carry that lonelines. It’s occasionally acknowledged that once upon a time your life was almost something else. You quietly carry your grief and you carry on. Along the way you find new challenges. You discover that there are a bunch of seminal moments & experiences that you have to put away. You aren’t really allowed to tell those stories like other mothers do. You aren’t even allowed to call yourself a Mum out loud. The title doesn’t make sense to the world when you have no flesh & blood children to show.

So, you learn to smile & say nothing. Just nod and ask questions when others share the tale of how they discovered they were pregnant. You can’t join in with a silly story about peeing on a dozen sticks. You can never say how you somehow knew before it was ever possible to do any test at all. Your stories aren’t cute. That’s someone else’s lot. You won’t be thanked for ruining the mood. Likewise you mustn’t share pregnancy tales. No friendly bonding over how tired you were or sick you felt. Cravings & aversions will remain unknown because, again, you have no happy endings. The tone of your reminiscing isn’t light. You can never empathise with a pregnant friend. To do so would be to draw attention to tragic realities. There isn’t a guilty party. You aren’t being maliciously excluded. It’s just life. Your child didn’t make it. Reminding everyone of that turns warm-hearted conversations into sad, awkward exchanges. You can’t broach the subject because you don’t want to spoil other people’s nice time. They won’t include you because they don’t want to hurt you or because they forget (or never knew) that you are part of that gang. You’re missing the vital component required for membership.

That hurts. The silence is painful. Biting your tongue & standing on the perimeter takes effort. Not letting any of it show can be torture. Not fatal though. You’ll find yourself in these situations repeatedly. You’ll realise you can survive them. You will nod along & take your sadness home. Unpack it when you’re alone. Go over your own pregnancy chronicles in the privacy of your head. Then you’ll have to take a deep breath & face the new hush.

You have nothing to add to the next part. The trimester you didn’t reach. The birth. The nights the baby didn’t sleep. The trials & triumphs of breastfeeding. Words and steps and sobs and kisses. You’ll have nothing to share. All you have is second hand information. When you help your experience isn’t really yours. Just borrowed. Never actually a mother’s wisdom. It’s still no one’s fault. You don’t wish they wouldn’t share. Don’t want to stop being a part of the whole wonderful process.

It’s lonely.

To feel like a mother & never have anyone call you mummy.

To shake your head no when you mean yes.

I know other people understand, but I’m still on my own.