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.

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Things I can’t believe I have to say again… Part 1

It may be a little over optimistic to say that summer is in the way, but I think I can at least say that winter is over. Whilst I can’t wait to enjoy more lazy days in the sun, hot days always give me a moments pause.

The reason for my second guessing is our old friend shame. As much as strive I to love my body there are still so many people who’d rather I didn’t. My body does not fit societal standards of beauty. Scrap that, I don’t even fit societal standards of normal. The fact that I refuse to hide my fat, scarred flesh rocks the normality boat even more vigorously.

It has taken me years to be able to celebrate my form. My ability to wear whatever I please & shed layers in the heat is a hard win victory. I won’t lie I often still have to steel myself to step outside in a vest. Not because I feel ashamed of my a scars or my past or flab or peely wally complexion, but because there are tonnes of folk who really, really want me to.

Staring is a given. Staring combined with nudging a mate & directing them to also have a gawk is also fairly frequent. Less common, but still occuring more than you would think is the person who thinks they should actually comment on my body. Oh & I give them so much to work with. Strangers just love to get angry, sad, concerned and curious about my body. Sometimes I can just shrug that off. Often I will snark back & think these strangers pathetic. However, there are times when for whatever reason, I’m just not up for the judgement of unknown members of the general public. Their stares, nudges & comments ruin my day. I do momentarily feel ashamed and scared and like I should never leave the house again. And, my friends, is not ok.

So, here’s a little advice.

OTHER PEOPLE’S BODIES ARE NOT YOUR BUSINESS.

Your thoughts on other people’s appearance are not important. Strangers do not want to hear them. Your moral judgements are your problem, don’t make them anyone else’s. Likewise your hang ups.

STARING IS RUDE.

Always. There are no excuses. If you find yourself accidentally staring, stop. If you see someone you think looks weird, bad, crazy just remember plenty of people find your visuals unappetising too. Oh & don’t oggle them.

In short, don’t be that person. Don’t be the one who spoils someone’s lovely summer day. You do you & let the rest of world do them.

You’re clouding my mind…

Nothing bad happened this week. No extra stressful event. No triggering sights or scents. In fact, it was quite nice. Easy weekend with my man. Luxuriously relaxing day with my sister. Words were flowing. I had nothing more taxing than baby shopping & light housework scheduled. All should have been well, but no one told my brain.

At some point on Monday night my head switched from calm to high alert. Try as I might I can not decipher why. I was one minute thinking about what colours to paint my nails & the next desperately trying to pinpoint my panic. It happens that fast. Like a storm cloud darkening the sky, my mood stiffens. Suddenly my only thought is why do I feel like something very, very bad is about to happen? All I can do is run through every aspect of my life & weigh up how likely disaster is. It doesn’t matter that my checks come up empty. That only makes the anxiety worse. Even If I can’t locate a likely impending crisis, I still feel on the verge of one. The disparity between my thought & feeling drives me crazy.

My body betrays me. It takes its queues from my beleaguered brain. Thus every gust of wind or car in the street sends my heart racing. I can’t relax. I can’t sit still. I can’t get anything done either. My head is too busy with the millions of terrible possibilities it has to discount. I can’t concentrate properly, so every task takes twice as long as it should. Or just doesn’t get done at all because you know, the post man came & I had to hide in my bedroom. What I was hiding from, I don’t know. I can’t think of a single scenario in which someone knocking on my door could realistically lead to a catastrophe. Nevertheless, I cower.

It’s exhausting and it is maddening. Free floating anxiety. I’m basically just fighting with my own stupid head. There is nothing to fear except fear itself. I think that phrase is supposed to comforting; not for me. Illogical, inexplicable fear itself is a formidable opponent. I’ll be ok. Can someone just please tell my brain.

I don’t know where I stand…

About 7 months ago, after years many years of knee pain & a limp that had become almost permanent I had an X-ray that revealed arthritis. After even more pain & increasingly frequent falls my Dr recommend a walking stick. 

I had been experiencing pain in my right knee for years. When I first mentioned it to a Gp he put it down to a small accident I had whilst playing with my niece. I had plenty going on health wise & at the time it wasn’t a constant or severe pain, so I left it at that. The knee got progressively worse & I mentioned it a few times to various gp’s but no one was worried & it got sidelined by more immediately pressing health issues. By the time I really couldn’t ignore it anymore I had been diagnosed with fibromyalgia. The knee pain was attributed to fibro & that was pretty much that. The pain however continued to get worse. It hurt all the time, standing or sitting. It even  woke me in the night. Then came the swelling, then the limp shortly followed by the knee giving way & me falling on my arse more than once. Back to my Gp I went, but only to seek advice on what might help my knee; I believed it was fibro related. Finally, over four years later I was sent for an x-ray, which revealed significant erosion in my knee joint. I didn’t expect to have a condition like arthritis at 37 & I certainly never envisioned myself with a walking stick, but here I am.

Foot & walking stick

There are so many things I could say about the difficulties of getting a diagnosis or even investigations when you have chronic conditions. So often when medical professionals see things like fibro in your notes they will just link everything to that. When you have multiple chronic conditions  multiply the difficulty. Add to that mental health issues, being a woman, being fat, the drs who think everyone with chronic pain is drug seeking & honestly, I’m just exhausted. Yes, it could have been spotted sooner. Yes, I would probably have a better prognosis if it had, but at this stage I’m just too tired to even think about that. There isn’t anything that can done about it anyway. It is what it is. 

Unfortunately what it is is pretty shit. On a number of levels. I hate to admit it, but there’s been a real mental adjustment along with the physical. I find it really hard when people see me with the stick for the first time. I worry that they’re thinking, oh god, she has another thing wrong with her. I worry that they’re embarrassed. I worry that I’m just too much of an inconvenience. 

I hate it, but a walking stick is a blow to the self esteem. I don’t feel particularly sexy as I hobble along, so obviously I question if others will view me differently. Intellectually I know there is no weakness in disability, but emotionally I feel weaker. I feel less useful.

Less fun.

Less appealing. 

All the while I’m telling myself what nonsense that is. That I know better than to indulge in such ableist thinking. Then I think if I, a disabled person am having these thoughts, then others certainly are & that’s not a productive thought process. I’ve already experienced how ignorant the world can be. How many people will still push past me or not offer me a seat. I’ve learned that places who bill themselves as accessible, just aren’t (and my mobility is still so much better than a lot of people’s). The weird thing is, I think the kind folk are almost harder to take. Every time someone offers to let me skip them in a long queue or asks if I need help, I feel utterly exposed. I’m grateful for the seats & the consideration, but I still feel very vulnerable about needing them. I’ve put so much stock in the power of being independent & capable that another level of disability is a struggle to accept. Yet, writing those words feel very indulgent. How dare I ‘woe is me’ when things could be a millions times harder, as I know they are for millions more if people. I know some of this linked to my mental health issues. There are familiar themes here; shame, guilt & a big helping of get over it. I suspect though, that maybe these feelings are pretty common for those dealing with disability. Thoughts & feelings aside, life is just a bit harder. For me & I’m sure for those around me. I’m slower & more limited. I can’t go anywhere without checking a dozen things beforehand. I’m grumpier & less reliable. Spontaneity is out, relentless checking is in. I hurt more. I need more rest & assistance. I find everything exhausting. I sound like an absolute joy to be around, right?


Finally, there is the stress. All of the above is stressful. Everyday tasks, trying to do something fun, the future are stressful. Attempting to manage all the stress, is stressful! 

I realise this is all sounding very negative & I don’t want to be that person, but I do want to talk about it. I’d like there to more of a conversation about chronic illness & disability. I’m sure some of this will get easier. Some of it won’t & I’ll have to adjust. Spoonie life is nothing if not challenging. The opportunity to spill my guts definitely makes it a little bit easier. 

Try to comprehend that which you’ll never comprehend…

In the midst of a wonderful weekend at the Edinburgh Fringe I had two really inspiring experiences. Both of which fuelled in me a desire to share some writing that hasn’t seen the light in quite some time. On Sunday I saw Neil Holborn perform his stunning poetry. He is very open about his struggles with mental illness & includes his own experiences in much of his work. The power of his honesty & the emotional response he received to some of his pieces really struck me. He reminded me of the power of sharing the dark reality of mental illness. Later that day I was introduced to a friend of my boyfriend who also talked openly about his past mental health struggles. This led to a discussion of how helpful it is to talk about these issues; how more often than not other people will then share their own experiences of mental illness. We talked a little about how that realisation that mental illness is actually really common relieved so much shame. It reminded me how important it is to talk frankly about my experiences, so that those in the depths of illness can see that they are not alone. Equally important is to reach those who have never been touched by mental health problems. Letting people see that this can happen to anyone, that the pain is intense, debilitating & uncontrollable lifts stigma. I really believe that the way to fight ignorance is information. Not just statistics, but brutal insights into conditions often misunderstood. It is so much harder to dismiss mental illness when you have been confronted with it’s reality. 

With this in mind I decided to review work I produced in my darker days. For those unaware I have battled with PTSD, depression & self harm for most of my adult life. Although my mental health is much improved from the time of this piece, it remains a daily struggle. One is never cured. The best I can do is learn to live with what I cannot change & fight for what makes my life beautiful. I am profoundly grateful to no longer be actively self harming. I am also aware that urges still exist. It takes work to maintain my current life. I make a daily decision to keep fighting & I am far from alone. 

I know these words may be disturbing to some, but I ask you to read them anyway. I share this because I passionately believe that a deeper understanding defeats stigma & grows compassion. 

i had another little crisis

despite a transfusion in late december,

my haemoglobin had again dropped to 6.6

causing doctor’s to get jumpy

&

prompting talk of another transfusion.

this fuelled  a panic in me

i do not like having blood transfusions

i feel incredible guilt.

other people are more deserving of this blood

someone selflessly gave of themselves.

i will waste it

i know it will feel horrendous inside me

i do not want it.

i don’t really have the option of

saying

no

they will call in a psych consult

which could lead down a road

i can’t

even

think about

my first stupid reaction

is

i must cut

whilst the dr’s decide

i will blood let

i know it doesn’t make sense

to most

but

there is method in the madness

my hb is already low

i may as well be hung for sheep as a lamb

i will hate myself less for shedding my own blood

if i lose enough blood

do enough damage

i may feel sated for a while

with this in mind i set to work

after two disappointing nights

of

slicing

&

producing inadequate wounds

i got angry.

on the third day,

the gp called to say they had decided to go with an iron infusion the following week.

i considered myself free

to

paint the town RED

i felt it couldn’t be that bad

if i didn’t need a transfusion

i had still better fit in as much damage

before treatment

&

truthfully

after two pitiful nights

i needed it

so,

feeling enraged with myself

i set to work

i chose a spot on my slightly less scarred right forearm

i cut vertically

downwards

towards my wrist

everytime i reached a depth i could live with

i elongated the cut

&

started to work down into it again

i got into the most dangerous mindset

where

i just can’t resist

a little

bit

more

i ploughed through the layers of my flesh

fascinated

with what lay beneath

i watched three distinct fountains of blood

flow into one

sticky

hot

pool

i pulled the wound apart to make the blood spurt higher

i sawed through

some

tough,unknown inner material

and

thrilled

as the spray soared out

and hit my face

when i was finished

i watched

for

i don’t know how long

long enough to become dazed

i had created a gaping trench

the entire length of my foream

that continuosly filled with blood

and

spilled over, flooding the floor.

i could not stop the blood

nor, could i think straight

i wrapped a towel around my arm

put a huge jumper on top

and

took the bus.

yes,

the bus

to a&e

i trailed blood into reception

& collapsed in the triage room

i was so ashamed

dreaded trying to explain myself

lay in a cubicle

crying

i had done this many times before

but somehow

i couldn’t control my fear or self loathing.

i received 21 stitches

a transfusion

and

was hospitlised again for three days the following week with chest pains & breathing difficulty 

requiring

another

two units

&

suffering from severe pain

i spent those 3 days in & out of a morphine

induced altered reality

Junior dr’s were too scared to take blood from my arms

apparently experience is required

to find a vein in this network of scar tissue

the consultant was overly kind

fellow patients

stared & whispered

i lay there in

shame

pain

fear

all of which added up to

another attempt

to stop.

11 days

and counting……

20/03/2012

Blood on a mirror

These songs of freedom…

Wow, it’s hot. This little heatwave we’ve been having is just what I needed. Sunshine puts a little spring in everyone’s step & it’s certainly lifted my mood. Part of the fun of summer is shedding some clothes & indulging in some flirty fashion. In years gone by I’ve missed this pleasure due to ALL the things I felt I had to hide. So, once again I want to celebrate the beautiful freedom the body positive community has brought to my life.


For so many years I believed that my body was ugly. I had completely internalised the fat phobia that society is drenched in. I felt ashamed of my scars & my flab & my uber pale skin & often unshaven parts. I’ve always had a healthy disregard for other people’s judgements, but aspects of my physicality were weak spots. I did what many women do; hid the shameful bits. I protected myself with loose fitting clothing, long sleeves & maxi hemlines. Additionally I built a wall of false, self depreciating confidence. I was always the first person to make a fat joke at my expense because it hurt so much less if I got in there first. 


I often doubted why romantic partners would want me. I felt huge & unattractive when socialising with slimmer friends. Shopping was a battleground of anxieties. So many special occasions were ruined because I never felt comfortable or even worthy. I missed events because I couldn’t find anything cool to wear that covered all the things I was scared to show. Countless opportunities to capture significant moments were lost because I hated how fat I looked in photographs. Most of all, I felt trapped.  I was caged by the standards society told me I had meet. 


Then came bopo. This idea that I was enough swept into my life & blew away a lifetime of bullshit. Immersing myself in a community who told me I was enough changed me. Actually seeing other fat bodies portrayed in a positive light was magnificent. I realised that when I looked at these women wearing amazing clothes, doing exciting things & generally rocking their lives, I saw beauty. 

From there is has been a gradual acceptance of myself. A growing appreciation of how my body looks. These last few days of scorching heat have made me realise that I might have reached peak self love. Not once have I worried about flashing my flesh. In fact, I have loved selecting outfits & enjoyed wearing them even more. Stares don’t phase me because I feel fantastic. I am sexy & cool & deserving of respect. Anyone who feels differently can kiss my fat arse. 


I find myself truly taking pleasure in my body. Be it snapping pics because my butt looks cute, being unabashedly naked with my boyfriend or feeling the fresh breeze on my scarred arms; I feel free. And it is joyous.