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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I’ve had a pretty blue day. There’s proper storm blowing around outside & I am incredibly tired, which definitely hasn’t helped. Mostly though, I feel shit because too many people have been horrible to me this week.
I had a very small day surgery on Monday, which went smoothly & really wasn’t a huge deal. It was on my dodgy leg & in a spot when stitches are very easy to burst, so I was told to be careful. With that in mind I got a taxi to the train station early on Tuesday morning (I watch my nephew on Tuesdays). The station has a little car park at one side, but that is not the platform I get the train from, so I need the taxi to stop on the main road. I say need because I mean need. If I get out in the car park I have to go out up a big flight of stairs to street level over the tracks & then down a smaller staircase to the platform. Getting out on the street means navigating one smaller set of stairs (which is hard & sore & slow enough). The taxi driver of course did not want to stop on the main road. He was annoyed that he’d have to go a little further down the road to turn at a roundabout & he didn’t want to pull over on a busy road. He argued that it made no sense when the station had a car park. Now, maybe I’m a bitch, but in my mind part of the convenience of paying a taxi to take me somewhere is that I don’t have to explain myself & I get to go where I want to go. I don’t relish having to explain my disabilities & why I can’t do certain things. Especially when I walk with a stick & it’s bloody obvious that stairs are not my friend. I did however tell the driver why I wanted to be dropped in that specific spot, but he still wanted to argue. Thus I had to say either drop me where I say or take me home and don’t get paid. With much muttering under his breath he did as I asked, which probably took less than 5 minutes more & was basically zero hassle to him. This, my day is off to a crap start & I’m already tired of just trying to move around in the world.
I struggle down the steps just in time to heave myself on to a packed train. The train is headed into town & it’s 7.45am, of course there are no seats left. I make my way to the seats that are reserved for the disabled, elderly etc and everyone sitting there avoids eye contact. I don’t know why people do this because not looking at me does nothing to reduce my need to sit down. All it achieves is putting me in the horrible position of having to ask for seat. This, I duly do. I politely ask the women in the closet seat if I can have her seat if she is able to stand. I am met with huffing & puffing as puts her jacket back on and a glare as she vacates the seat. I thank her anyway because I have some bloody manners & sit whilst others who previously avoided looking in my direction now recover their ability to see me. They now make full use of this rediscovered function to gawk at me for most of the journey. I’m sore & tired & anxious & very conspicuous. It isn’t even 8am. I arrive at central station & have to buy a ticket. There was no ticket inspector on the first train & I have to get a second to complete my journey. The ticket office on the platform has the barriers set up to control the queue. I have to walk around it to get into the queuing area & follow the barriers to actually reach the end of the line. I’m slow, i’m conscious of not messing with the wound on my dodgy leg & I am worried about this queue because I’m really not sure I can stand that long. Roll on more rude people. As I follow the path made by the barriers people just barge right past me. One women even does a little run just as I near the end of queue so she can get in front of me. What kind of dickhead rushes to skip a disabled person who is clearly having difficulty? I don’t know, but I can tell you there are too many of them & I don’t always have it in me to let them know that they’re a knob.
Anyway, I get my ticket. I locate the platform of my next train. I find a seat because I can’t go any further until I’ve had a rest. I eat a lovely banana, check my messages & listen to some tunes whilst I gather myself. When it’s time to to head to the train I have recovered some equilibrium. I’m thinking today can be saved. One train journey & I can cuddle my gorgeous wee monkey. This is what I’m thinking as make my way along the platform & a large man barges right into me. He took me completely by surprise, I had nothing to steady myself on & went flying. Mr ‘catching my train is life’ didn’t even stop. No apology, no let me help you up. Kept marching right on & boarded his train. Incidentally his train was my train & it wasn’t leaving for 9 minutes. Whilst he presumably found a good seat I was lying on the platform bleeding. A nice ticket guy helped me up & onto the train. He even radioed someone the description of the guy who knocked me over, but to what end I have no idea. I’m not sure what anyone could really do other than tell him he was a prick. That surgical wound I was being oh so careful with is now bleeding furiously. I didn’t want to remove the dressing on the train, but I’m sure the stitches have burst (they had). So, I’m applying pressure & being watched by other travellers (again) as I try to put myself back together. I was pissed off, but focusing on gathering myself & getting where I needed to go.
Mr nephew was, as always, a delightful little bundle & I got through the day. I arrived home last night utterly exhausted & dropped into bed almost immediately. After a fitful night of sleep I awoke feeling just as tired. My leg is swollen & the wound can’t be restitched (it’s been open over night & restitching would be an infection risk). It will heal, but slower & messier. I had things to do today, but I didn’t do them. Partly because I was in a fair bit of pain and exhausted. Mostly, though, because there was a strong wind & yesterday shook my confidence. The accumulation of the rudeness, arguing, staring & knocking me to the ground was that today I was acutely aware of my disabilities. I didn’t feel up to dealing with the world & perhaps ending up worse for wear again. That realisation made me feel like shit.
I don’t like to think of myself as fragile or incapable. I know my limitations & I try really hard to work around them. I have to think ahead. I do things a bit at a time & I sometimes have tackle things in ways that might not make sense to others. I know I can be awkward. I know that the accommodations I need can be a pest to others. All disabled people know this. We aren’t asking for seats or giving specific instructions for a laugh; it’s the only way we can live in the world. I already feel stressed & anxious about needing these things. I am certain I’m not alone in it that. So, when you force me(us) to explain ourselves it’s horrible. When you make a fuss about being stuck behind me as I move at glacial pace, you are making my life a nightmare. Your stares & sighs can ruin my day. Limping along with a stick at 37 is not my ideal life situation. Fainting on public transport is not a thing I relish. I did not choose to hurt all the live long day. I do not want to have to ask you for anything, but I can assure if I was in your shoes I’d offer my seat with good grace.
I’ll heal. I’ll give myself a shake & force myself back out the door again. I will hold my tongue (most of the time) as you push past me & roll your eyes. I shouldn’t have to, though. Living with my disabilities is hard enough. I don’t want to manage your arsehole tendencies too.
This week’s celebrated woman is someone I have the pleasure of knowing. She is a bopo goddess, a thrifting maven, accomplished public speaker & possibly the bubbliest person I’ve ever met. Ladies & Gentlemen, I give you Hayley Angell.
I met Hayley at a blogger event in Glasgow & was instantly impressed by her vintage look. I was also a little intimated by her polished confidence. I don’t find these events very easy. I have a lot of anxiety around new people & situations. I have even more anxiety about hiding my discomfort. The moment I spoke to Hayley I felt more at ease. Her sincere warmth allowed me to collect myself & have a good time.
I obviously immediately commenced following her on social media and have done so since. Hayley’s accounts are bursting with life affirming energy. Her honesty about her body positive journey; discarding control garments, trying new activities & generally enjoying her body is inspiring. She recently discussed her experiences as a plus size women taking burlesque classes. Despite outward proclamations of inclusivity she still felt it was assumed that fat women would be less assured. She got the sense that fatter folk were quietly ushered into the background. It takes guts to be open about this stuff. Even more to be honest about how often we convince ourselves that we belong at the back of class. Thus, she used her Instagram account to launch #stepforward a reminder to all plus size people that we are worthy of taking up space & being seen.
The Body Positive community has given me so much. I always want to say thank you to those who inspire me. I also want to spread their work because I know it can bring others happiness. Hayley is one of those fabulous women who can help you change how you see yourself. She is an insta must follow.
Bopo aside Hayley is, as I mentioned, a thrifting magician. Her Instagram is worth following for her second hand style alone. If you need tips on trawling the charity shops for fashion gold, Hayley is your woman. If you simply enjoy seeing a person enjoy themselves & clothes, she is still your gal.
I’ve only met Hayley in person once, but I would not be without her online presence in my life. For a shot of genuine self love, go press those follow buttons.
Chronic illness is a shit show. Sometimes literally. Which is thing a that often goes unmentioned. Beyond the pain, being incapacitated & generally hindered in life there is the embarrassment factor. Believe me, that’s no small thing.
Disability brings many embarrassments. Perhaps most notably, for me, is the discarding of a layer of delicacy that I cherished. I am not by nature a person who cares to discuss certain bodily functions. I don’t find toilet humour funny. I don’t need the details of your bathroom trip. I have weird anxieties about toilets/bathrooms that are not my own. I’ll hold a pee for ten hours because the toilets in the bar aren’t spotless or because I saw a hair in your bathroom. A pee used to be the absolute limit of what I would even consider doing in toilet outside my own house. Now, I long for the time when I could reject toilets willy nilly & only go in the privacy of my home. Those were the days.
These days I always need to know where the nearest ladies is. Often I can’t leave the house because I cannot be more than a few feet from my bathroom. If I go out the choice of where & when I deign to use the facilities is no longer mine. My stomach now reigns supreme. It’s not a benevolent ruler. IBD has put paid to any friendly relations between myself & my digestive system. Throw in a hiatal hernia, GERD, anxiety & fibromyalgia and you have the making of all out war. In short, my digestive tract rarely behaves. Whether it’s vomiting, diarrhoea or constipation it’s always up to no good.
Now, along with cramps & heartburn & nausea & wind & reflux & horrible, horrible pain I get to deal with the crippling embarrassment. I have to worry that the public toilet will be packed when my stomach is in distress. I panic that I won’t get off the bus in time to not ruin everyone’s day with the smell of my vomit. I have to use friend’s bathrooms & worry if I’m taking too long. My boyfriend gets to listen to me throwing my guts up whilst he lies in bed; trust me, it’s not sexy.
I am constantly trying to manage these symptoms in ways that allow me to avoid talking about them. I time eating around when I will be in locations that I can easily to escape to the facilities without drawing too much attention. I’ll avoid eating before car or public transport journeys. Often, I’ll just stay home. At heart I’m still a person who doesn’t want to even allude to any of this stuff. I’ll say I don’t feel great when what I mean is one way or another the contents of my stomach are going explode. I’m embarrassed to talk about it. I’m embarrassed for other people to know much about it. I’m mortified at the thought of it getting worse.
As hard as I find it I’m now a person who has to do these cringe inducing things ALL THE TIME. I find myself having a near panic attack in a cubicle because maybe people can hear my insides trying to get out. I’m quietly dying whilst Drs question me about my bowels. I am rushing into pubs you usually couldn’t pay me to step into to use toilets worse than the one in trainspotting. It’s awful. I hate every twinge & cramp & wave of nausea; partly because they feel rotten, but mostly because I’m embarrassed.
So, here I am talking about it. I’m hoping if I just put it out there for all to see I can stop freaking out. I know other people experience this stuff & I’d hate to be part of the silence that makes anyone else feel this rubbish. If nothing else perhaps being a bit more open will alleviate some stress, which can only be good for my tum.