distress

Be running up that hill…

~ somethinginthewayshemoves

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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Welcome to my nightmare…

~ somethinginthewayshemoves

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…

~ somethinginthewayshemoves ~ 2 Comments

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.

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Don’t worry, my arse…

~ somethinginthewayshemoves

I worry. Quite a lot actually. I stress over things great, small & possibly non existent. I probably worry much more than is either necessary or prudent. That’s the nature of worrying, though.

So, I while I confess to sometimes wishing I could turn off the worrying I find it incredibly frustrating when people suggest that is possible. There are of course strategies to deal with disquieting situations, merely deciding not to worry about it is not one of them.

I keep seeing this sort of thing offered as some kind of wisdom. This isn’t wise, it isn’t even sensible. It just displays an inability to understand what worry is. If it were possible for a person to decide no to worry, worry wouldn’t be a thing.

Obviously this is abelist. Anxiety is not always rational. Many people struggling with mental illness have spiralling worries. Ranging from the practical (money, employment, relationships) to the irrational & far reaching concerns that mental illness can bring. When you tell someone they can choose to stop, you’re kind of saying their anguish is their own fault. Advising a person to just stop worrying is as pointless as telling them to just not be ill.

Setting aside the ableism it’s still infuriatingly useless advice. Let me break it down,

Do you have a problem?

If I didn’t consider the issue a problem, I wouldn’t be concerned about it. So, yes, regardless of what an outsider might think, I clearly think it’s a problem.

Can you do something about it?

If I can, the solution must still be troubling or uncertain otherwise I wouldn’t be worrying.

If there is nothing I can do ignoring or pretending the issue doesn’t exist will not help me. Plus, lets me face it, if you are facing a problem that you cannot solve it’s unlikely that you can just magically forget it.

Saying this to someone in distress is unkind. It basically translates to I don’t care. Telling someone not to worry is not a suggestion of self care. It’s dismissive. Instead, perhaps try listening. Sometimes just saying it out loud can be helpful. If you can offer practical help, do. If you don’t know what someone needs, ask. A simple ‘what can I do’ can be so valuable. A little bit of time goes a long way.