Care a little…

About a week ago I had a telephone appointment with one of the Gps from my practice. I haven’t had much interaction with this Dr and it did not go well.

After a brief conversation about the symptoms concerning me, she suggested we start with some basic tests and swiftly moved on to checking my weight. I asked why she wanted my weight and explained if not medically necessary I did not want to be weighed. The Dr replied that she would like to calculate my BMI. I told the Dr that BMI wasn’t scientifically sound and I didn’t want to discuss it. I’m sure you can guess how the appointment went from there.

It was the usual gaslighting and time wasting. According to the GP she would be negligent if she did not assess my BMI. I reiterated my objections to her weight focused approach, all of which were dismissed. The appointment was taken up with this back & forth instead of actually discussing my actual problems. I have informed various practitioners at the surgery about my preferences with regards to being weighed, discussing weight loss etc. I have disclosed my history of disordered eating and how intentional weight loss is detrimental to my mental health. I’ve also discussed the harm caused to me by weight stigma, which includes near fatal misdiagnosis and long term health implications. All of these conversations should be recorded in my notes as per my request. Yet still, I find myself regularly having these interactions whilst trying to access medical care.

A blue bathroom scale that reads doesn’t matter

Given our in-depth conversation about why I wouldn’t be weighed without solid medical reason, I had hoped that might be the end of it. I was fairly surprised when I saw the nurse yesterday for bloods and she asked me to ‘hop on the scale’. I gave her my standard, I don’t do weighing unless medically necessary. The nurse then told me that the Dr had specifically noted that she must makes sure she weighs me. I was internally furious, but calmly explained to her that I had already told the Dr I wouldn’t be doing that. Luckily, she left at that.

I am chronically ill. I have lots of interactions with medical folk. I am flat out exhausted before we get to the fat phobia. I often don’t have the fight in me, but I’m forced into battle. There is no let up. If I don’t assert myself I will not get the care I need. I know from bitter experience just how dangerous that is. The problem remains that even when I do stand my ground, the medical profession is want to shove back. Either I am entirely ignored or I am labelled difficult. It’s endless and wearing.

The persistence of these attitudes feels like a war of attrition on the patient side. It’s draining. No matter how many times I make my wishes known, they are ignored. Coming to appointments armed with facts, evidence and clear description of how this weight stigma harms me, makes no difference. Today was a classic example of this. I wasted my time discussing very personal & traumatic experiences with a Dr in order to justify declining to be weighed. She simply set it all aside and took action that she knew would harm me. I shouldn’t have to justify not wanting to do things that are not necessary or helpful to my treatment in the first place. However, it is clear regardless of how much time & energy I invest in explaining why intentional weight loss talk is detrimental to me, medical professionals will not listen. The stress of always having to be prepared for a fight is immense.

I will of course take steps to address this latest event with my practice. I can only hope they take action to protect me. It won’t bring the discussion of my weight to a close. There will still be another specialist, nurse or hospital consultant who views me as first fat and second a person in need of medical care. Right now the knowledge of that is way too overwhelming.

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You’ve got stuck in a moment…

You know how they say you can’t smell your own perfume, so you have to careful now to wear too much? I feel a bit like that about my body. Specifically, my scars.

I’ve lived with the damage for so long that I cannot judge how severe it is. Mostly, I don’t think about my scars at all. They’re not a consideration in dressing anymore. I’m not ashamed or embarrassed of what they may signify. I usually find any rudeness engendered by my patchwork skin says more about the observer than the observed.

However, every once on a blue moon I have a moment. Often it’s my own doing. I catch sight of my reflection at an unusual angle or change under different lighting and I’m shocked. Horrified maybe. Not so much at my appearance as the fact that I did this to myself.

More rarely it’s as a result of another’s extreme reaction. A gasp or frightened look stirs much more than judgemental comments. When my battle scars scare others it stirs the old guilty feelings.

Sun shining through trees

In either case it is doubt that knocks my confidence. I find it impossible to determine if my body is hideous or merely slightly disfigured. Without a clear grasp of what I have done I feel adrift. It takes me back to my days in the self harm trenches; never knowing how serious a wound was. Unable to grasp onto any equilibrium.

Am I a dramatic fool over nothing or inflicting horror on innocent parties? And which would be worse? The uncertainty shakes me. I feel an imposter. For all my proclamations of body confidence there are times when my self inflicted seams run deep.

I’m stuck in a moment right now. I fight the urge to hide. Steal myself against thoughts of splitting those seams open. It’ll pass. In the meantime I’ll have the long sleeve weather to regain my surety.

Blurry lights through blinds

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 can’t change the way she feels, but you could put your arms around her…

I dreamt about an old friend last night. A friend who is no longer living. It was a lovely dream that I was sad to wake from. As I tried to commit the dream to memory I realised that whilst I thought of her often, I hadn’t spoken out loud about my dear friend in a long time. Too long a time, which is something I need to rectify. I need to talk about her. Tell her story. Share how she changed me. And that is exactly what I am going to do.

Let’s start by saying I met J because we were both ill. I was in my early twenties & struggling to deal with undiagnosed PTSD. I was trying to hold together a life that was increasingly unsatisfying with a self harm habit that was spiralling out control. J was dealing with similarly unhappy circumstances and a self harm problem that becoming, frankly terrifying. We both found some comfort in a community of sick people who didn’t know where else to turn. We were people who couldn’t ask for help or had asked without receiving the sort of assistance the we needed. No one talked about self harm then. Except maybe in the odd film where it was usually portrayed as something a trouble teen might do or a suicide attempt. Even the mental health professionals treated us like shit (sadly, some still so). If our attempts to hide the problem had failed, our families & friends were frightened ( & in some cases cruel). We were dealing with real problems; rape, abusive relationships, miscarriage, escaping from cults, drug dealing parents & a multitude of other big, scary problems. We were of course also living with mental illness. Some of us had a laundry list of labels and others had not a single clue what the fuck was wrong. But there was absolutely something going very wrong for all of us. This is where I met J. Amongst this this group of desperate people I also found a salvation of sorts. These broken people offered each other a kind of support that we couldn’t find anywhere else. We dragged each other through the kind of darkness that most will never understand. And J was kind of our leader.
J was living with pain beyond what would be considered durable. Her mental anguish was compounded by the physical horror she was compelled to inflict upon herself. J was not ok. Every solitary moment of life was a battle hard fought. And, yet, she always had time for us. She had love and support and encouragement for her damaged flock. J lived in a different time zone, but she still called day & night to remind me to keep breathing. She wrote letters and sent care parcels. She compiled lists of all the things that just might offer one us a couple minutes respite from our own fucked up heads. She replied to every ‘ I can’t do this anymore’ with such kind & convincing entreaties to keep trying, that we did. Her words worked because we knew, that she knew. We were all able to help each other because we shared a world that most people didn’t know existed. For me, j was the ultimate inspiration. If she could do this with such grace, I owed it to her and all the others who loved me to at least not give up.

Kelvingrove park

It’s such a cliché, but this goodness expanded beyond our group. She was studying to be a nurse because she wanted to help people. Everyone in her life adored her. J was that person who offered succour, but she wasn’t a martyr or a goody goody. She was fun. Her sense of humour could be wicked. Most of all she was strong. J fought to live. She engaged with mental health services that let her down over and over and over. She was still working and studying at the peak of her illness. She endured the brutality of her self harm and the callousness of those supposed to treat them. She did it all with dignity. Life beat J black and blue. This world committed an almost constant vicious assault on her. She fought back hard. She battled with and blood and heart and care and tears and wonder. She did not win.
J succeeded in taking her own life in a sad and awful way that left no doubt that she meant it. I wish with everything in my being that I could have changed how her story ended. Both the circumstances & the prematurity of her passing, but I don’t blame her. I understand that life was no longer a viable prospect for J. I hate that, but I do not begrudge her some peace. I am still angry at the professionals who failed her and the people who’s actions caused her so much pain. I will never be angry at J. She gave life her very best shot. Her suicide was neither selfish nor weak. It was just the only option she had left. It kills me that someone so beautiful was left with a choice so ugly. I understand it, though. Whilst I know it may be an unpopular opinion I can accept it. I can respect that it was her decision to make.


So, why I am writing this? What am I left with? Actually what remains is so much more positive than I could have ever imagined. Losing J was soul destroying, but life does go on. I go on and so do those other sad people that she cared for. I don’t want to disrespect those wonderful people by not acknowledging that they too saved me. We all helped save each other. In hundreds of big and small ways. After J’s death we continued to care for each other. We laughed and cried and screamed and swore together. We stayed up nights and called ambulances. We sent Xmas cards and made hospital visits.
From that group I maintain friendships with some incredible people. Some of us are entirely recovered, some still walk the tight rope; we are all still alive. We have partners, careers, babies, hobbies & passions. We all do our bit for mental health awareness. Whether that’s through writing, organising, working in the field, donating to MH charities or just supporting loved ones with their difficulties. I will spend the rest of my life doing everything I can to prevent others falling through the cracks. I will fight for everyone to have more choices than J. I know I am not alone. That is her legacy. She lives on through the people she touched. We endured. We succeeded. We survived.
WE LIVE

1 in 4 adult in UK will experience mental illness at some point in their lives. It is incredibly likely that you or someone you love will have to fight this battle. You can help improve the lives of suffering in a number of ways. Please do what you can to make sure more people survive.

Add mental health education to the national curriculum

Donate to Samaritans

Donate to SAMH

You an also make a massive difference by writing to your elected representatives an telling them mental health is major issue for you. Let them know that how they vote on mental health related issues matters to you. You can find your representatives here.
Find my MP
Find my MSP

 

All I can say is I’m breathing…

PTSD is a persistent foe. You can make progress & start to think maybe, just maybe you can actually defeat this bastard, but it knows you think that. 

It’s waiting for you to relax your hyper vigilence. The moment you begin to let go of the breath you’ve been holding for 17yrs it will suck it in & grow.

Folks in your life see you gaining strength & think you’re better. There is no ‘better’.  There is managing ,

coping,

trying to live,

daring to live?

The good days can start to stack up. You can feel a safe distance from the horror, but you can never be sure. 

You can never be certain that a flashback won’t stun you like lightening. 

And stuck in that hot, white memory you could loosen your grip on the here & now.

The relative calm & safety could be shattered. Perhaps only for that instant. You could be lucky, those smells & fears could melt away. Current achievements or delights may well wash over you. It’s possible. That happens. 

You’ll make plans & take steps. But you’ll always be looking over your shoulder. The knowledge of the cruelty of your own mind will keep you rigid.

Because lightening does strike twice & thrice & ever & on.

With every thump of your heart you know you’re only one more squeeze from disaster. Where little sleep becomes none. The crazy creeps out from behind all those positive walls, it brings terror & tsunamis of grief. 

And the pills don’t work

Or Dr’s 

Or the life jacket you had to make with your bare hands. 

There is only one way to row to shore & it’s brutal. It’s hot blood dripping from your fingers; slippy yellow fat & an uncontrollable urge to cut a little deeper. 

Bleed a little more 

Wrapping up the unthinkable pain in the easy hurt of butchering yourself. 

This illness is being  awake in the night & writing so you won’t do. It’s ignoring the destructive comfort because you so desperately want this new, real life. 

And, yes, all those yous should be I’s. 

It’s my past, my pain, my ongoing battle for a future. 


Listen, I’m a really perfect song.