Mother’s Day is always a tricky one for me. I love my Mum, of course I want to celebrate her. I have a lot of wonderful Mums in my life. All of whom deserve to be spoiled. I also feel incredibly fragile.
I’ve put a lot of time and effort into building a protective shell around myself. You can’t live if you wake up everyday confounded by what you have lost. It’s always there, but self preservation is an art you can learn. There are some thoughts that I don’t allow myself to examine. I push them outside of my armour and focus on something else. Unfortunately my shell is not impenetrable. There are dates, memories that crack the surface. Mother’s Day, is obviously one of those occasions.
Mothering Sunday is a trigger in the true sense of the word. It has the power to wreck me. Realistically, that’s not an option. I refuse to ruin a special day for people I love. Still, the whole process is hard. Shopping for gifts is painful. I find myself drawn to things that I’d like to have received. I both love and envy watching my niblings express their love for their Mummies. That bond between mother and child is unique. And oh so special. All of my siblings have children meaning my Mum is also Gran. They love her so much and always want to make/buy things for her too. It’s another little detail that I dreamed of, but won’t live. Each of these pierce holes in my carefully crafted casing.
For me, the solution has been creating a little emotional distance. I pull myself back from the feelings and do what I can to enjoy the day. When I’m alone again, I let myself feel it. What’s the point of this? Just to say that if you are struggling today, I get it. It’s ok to give yourself what you need. Go gentle.
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Time to talk day has just be crept across my timeline. I’m hoping it’s a testament to how attitudes have changed towards what is needed in the mental health sphere that I’m only being alerted to it at 9.30pm. Despite my cynicism I clicked and perused the website.
Sadly, it’s the same old story. Like most other mainstream advocacy for mental illness, Time to talk fails in tackling the real barriers people with mental illness face. Of course it is important to dispel stigma around mental health problems. It is also great to encourage people to support friends, colleagues etc. The tips on how to approach such conversations are fairly helpful. My issue with this model is that I don’t believe it acknowledges the depth & breath of the problem. In fact, I would go further in saying that the offering a listening ear platitudes can even diminish the experience of many with mental illness.
I’m 43yrs old and I have managed various levels of mental Illness almost entire and life. In all of that time the NHS has been under resourced in the mental health sector. As the years have gone by funding has been slashed and the problem has grown. We have been at crisis status for a very long time. There has been an uptake in mental health awareness. Campaign after campaign successfully identified warning signs and urged us to seek help. Unfortunately, the help requested is most often not forthcoming.
At the moment just getting a Gp appointment can be an enormous struggle. From there referral to primary mental health services always results in landing in a very long waiting list. If you can survive that wait, the treatment available can be limited. The first line is usually a limited course of CBT (cognitive behavioural therapy). CBT can of course be effective for some issues. It is not an answer for more complex mental illness. Alongside CBT there are a variety of helplines and websites, which can offer valuable information, but do not constitute treatment. There are of course psychiatric medications. These can be life saving and do improve the lives of millions. However, they are not magic, most often they must be used in conjunction with other therapies.
A referral beyond the intial interventions already mentioned is difficult to obtain. Infuriatingly, not everyone merits a place on their waiting lists. Those who do make it are in for another privilege wait. The quality, duration & efficacy of what is available at the end of that line is unknown. There are excellent professionals, treatments & resources, but they are stretched beyond thin. There simply aren’t beds, funding or staffing to provide the appropriate treatment & support for everyone who needs it. The result is, most people are shirt changed. Problems that could be caught early are allowed to progress. Serious problems become emergencies. In short, our population suffers more mental illness and become trapped in illness for longer. Some, forever.
Beyond the personal tragedy, the social and economic toll this takes is clear. People become unable to work, care for their families, participate in their communities, they then are laden with whole new set of problems. This of course negatively impacts their mental health and round they go. More people end up in crisis with no where to turn but emergency services, which are not equipped to render proper treatment. Again worsening the situation of the individual and eroding resources available overall. Apply this cycle across the board and it becomes obvious how vicious it is. It is an enormous widespread problem that can not be solved without massive funding, recruitment and a re evaluation of government policy.
Atop those failings is the fundamental shortcomings of the message itself. Breaking down stigma is vital. However, I think the focus of these campaigns, asking how people are feeling, actually is listening to the answer and so on, don’t go nearly far enough. It gives the impression that all mental illness can be easily solved. The adverts and literature are always about depression or anxiety. They show the palatable side of these conditions; someone who has a difficult period and with a little help from their friends gets better. Images of people crying or holding their head in their hands distort the reality of living with such conditions. When someone can’t get out of bed or in the shower for days on end, when they can’t function or find relief despite those caring chats it’s a shock. A check in with the Gp & some anti depressants won’t cure everything. Mental illness encompasses a myriad of conditions. Symptoms can be extraordinarily distressing and debilitating. Some are enduring illnesses that require complex and specialised treatment. Conditions like schizophrenia, Ptsd or Bpd are rarely discussed. Instead they’re sensationalised & misrepresented in the media. Perpetuating dangerous ideas about those living with certain conditions. The fear and shame have not been dispelled. We’ve merely carved out a tiny category of ‘acceptable’ mental illness.
The recovery narrative presented in mainstream mental health advocacy is too simple. Not everyone gets better. Lots of people instead learn to manage their mental illness. Others have recurring episodes. They are still smart, loving, valuable human beings. When all society is presented with is neat stories of struggle, seek help, return to health forever expectations are unrealistic . Those who don’t follow that template become doubted. Compassion turns to thinking they’re not trying hard enough or maybe they’re exaggerating. Stigma persists. We need an informed public. Not only on the broader experience of mental illness, but on ways to bring about change. People should know why our services are failing. The power of our voices and votes must be understood. We also need education around navigating the systems that exist. Everyone should be aware of how best to advocate for themselves and loved ones. We do need to talk, it’s just a much bigger conversation.
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I have been somewhat absent here. Anxiety has engulfed me. There is a very specific reason for the anxiety, unfortunately it is not a thing that I control or fix.
Theoretically being able to pinpoint the trigger means it I should have a definite end point. However, since resolution is not within power the uncertainty persists. I can’t even begin to address the issue until next week, which leaves me endlessly playing out scenarios in my head. It is sickeningly stressful. The fear that has been sitting on my chest for a week feels like it’s attempting to climb up & grab for my throat.
I’ve tried every calming weapon in my arsenal to little effect. When I managed to leave the house every sensation was painfully amplified. I was both submerged in sound & every noise was taking place inside my body. Likewise, every living being in my approximate vicinity seemed claustrophobically close. I felt dangerously on display & incapable of making a quick retreat. Sitting still was impossible, but moving left me gasping for breath. I couldn’t decipher if it was Pots or anxiety related. The more I worried about it, the less able I was to catch my breath.
Outside was brutal. Inside is merely a more measured torment. The slow drip of water torture rather than the ripping out of finger nails. I remain on high alert. For what I don’t know; there is no physical threat. My mind stubbornly refuses to divert course. If I pull it astray thoughts quickly revert to dissecting worse case situations. This is very much a wait and see kind of issue. Strategising & replaying every possible outcome cannot help me.
Still, I lie awake at night with my heart pounding. When I finally dip into sleep my subconscious conjures catastrophes that aren’t even feasible. I awake in a panic that fades to dread. An awful gnawing fear the dark summons in the certain absence of slumber. I never feel more inclined to screaming than when imprisoned in insomnia. 3am worries are no one’s friend.
Of course I reassure myself that I can survive subpar outcomes. I do know that this extreme horror level of anxiety will not last forever. I’ve coped with worse & there will be much better days. My mind simply doesn’t care. We’re hyped up to life or death threat defence and it has no intention backing down. If I had a bunker, I would be in it.
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We’re all familiar with the reminder letters and campaigns urging us not to miss our cervical smear test. We are rightly told how important they are in detecting cancers early. I’m glad these tests are available. I am also happy that we are educated on why these tests are so necessary. However, I find myself increasingly frustrated with the messaging.
So often when a person or organisation wants to encourage people to attend cervical screenings they focus on how easy it is. We’re told it is silly to be embarrassed and it will be over in a flash. Don’t risk your life over 5 mins of feeling awkward is repeated. Smear tests are confidently declared to be not painful. Just a little discomfort, nothing to worry about. While that might be true for lots, it is not full the picture. The patronising assumption that people miss smear tests because they’re self-conscious is harmful. Many people have valid reasons for their reticence. Addressing those issues would be a more effective way of increasing uptake numbers.
Research from Jo’s Cervical Cancer Trust and Rape crisis revealed that 72% of women who have experienced sexual violence have skipped or delayed a smear test. When you consider that at least 1 in 5 women have been sexually assaulted you can begin to understand the scale of the issue.
Birth trauma & pregnancy loss also impact a significant portion of those who require smear tests. Gynae exams & cervical screening require being in vulnerable positions that can trigger a trauma response. Recent research is finding that baby loss & birth trauma often results in PTSD. So, it’s easy to see why a smear test would be not a easy exam for those who are affected.
There are also medical conditions/physicalitys that can make a smear test very difficult. Conditions like ,vaginisimus, endometriosis, cervical ectropion and more can make smear tests painful or difficult. Cervical position, vaginal dryness, menopausal changes and FGM can also impact how a smear test feels.
Trans men may find smear tests hard for all obvious reason. Dysphoria, stigma, discrimination and more. I’m sure everyone can understand how having to deal with any or all of those things is a frightening prospect. It can also be difficult to access information; trans men may not be invited for cervical screening, there is confusion about who requires the test etc. Of course this may be combined with any of the other issues on this list.
This is by no means an exhaustive list. I just want to be clear that there are many real reason for a person to avoid cervical screening. That being said, how can we make it easier? Well, there are actually a lot of accommodations you can ask for. I don’t see this talked about enough, so I wanted to share that information.
Before I get into the details, I want to be clear that you do not have to disclose anything you are not ready to discuss. You can ask for accommodations without revealing your trauma.
Before the Test
You can ask you GP to take your name off the automatic reminder list if those letters are distressing.
Ask for the test to be performed by a person of your preferred gender.
If you have an established relationship with a Dr/Nurse you can ask to have them do your smear test.
Make an appointment to talk about the smear test. Discuss anything you need to talk about. Be that how the test is done, why is it done, your fears, worries etc.
Request a double appointment to allow time breaks, extra time.
Plan what you will do after the test. You may not feel up to returning to work or you might not want to be alone.
The Test
Take an emotional support person to the appointment.
Request a chaperone be present for the test.
Ask to talk through the ‘mechanics’ of the test before you start. Have the Dr/Nurse show you the instruments used.
Tell the person performing the test any words or phrases that could be triggering for you. If there are words of comfort that are helpful for you ask them to use those.
Explain how heavy/light a touch you are comfortable. If there are areas you would like them to avoid touching if possible, tell the Dr/Nurse.
Ask to insert the speculum yourself.
If you are concerned about specific trauma/pain response discuss that with the Dr/Nurse. For example tell them this part of the exam is usually painful for me or I might be unable to chat/answer questions.
Agree a plan of action beforehand; what would you like to happen if you are triggered/pain is too much. You can decide on a word or sign to use if you are in distress.
Combatting Pain/Distress
Mindfulness Techniques – Exercises like naming three things you can see, smell, hear can help route you in the now.
Distraction – Play music, make small talk with Dr/Nurse, your support person.
Squared Breathing – This sometimes helps me get through acute pain/the onset of panic. Breath in for 4, hold for 4, breath out for 4, hold for 4. Repeat.
Take a comforting object. Fidget object. Scent that invokes calming feeling. Hold support person’s hand.
Discuss having medication prescribed. Things like benzodiazepines can help with anxiety, allow your body to be less tense. Maybe you need a stronger pain medication to deal with the test/after effects.
Know Your Limits
It is ok to stop at any point. If any part of the process becomes too much, stop. You can reschedule the appointment. It is ok to try as many times as you need. This test is for you. You are not obligated to fit into anyone else’s timeline or expectations.
Smear test are an important part of early cancer detection, but your whole health & well being are equally important. Shaming people or dismissing the reason for their reluctance does not help. If we are to increase the uptake rates we need to acknowledge what is actually preventing people from attending. We also need to facilitate ways to address those concerns.
It’s another gloomy Sunday afternoon. It’s drizzling outside & the day’s main occupation is emptying my over stuffed washing basket. It’s not a terrible day. Just routinely tedious.
It would merely be one more underwhelming day if it weren’t for the lightening crack in my pelvis. The shock that spreads to my back and sinks into my thighs. A monthly reminder. A living memory who’s intensity at times pushes the familiar into trigger territory. What rushes in full colour into my brain? Blood
Blood in my pants
Blood on the floor
Blood on my thighs
Blood in the bath
Blood on surgical gloves
Blood on a hospital chair
A supercut of blood. Staining an array of places I’ve called home, polluting clothing & towels. I can feel the rush of blood in my ears as various medical professionals tell me things I never want to hear. The heat, the rhythmic contractions, the fear rush me from yesteryears.
I know all the tricks. I breathe. I describe my surroundings in detail. I repeat ‘I’m ok’ over & over & over. I pet my cat; hear his purrs, feel his super soft fur. I plant my feet firmly & watch my toes wriggle on solid ground. I’m here. I’m safe. I’m in this room. And I am. For long enough to switch reels.
I’ve clicked over to a different familiar. My heart is pounding & adrenaline crackles. My body gets there a fraction before the idea fully forms. It’s too late to call halt. The only thing that ever stopped the bloody horror is more blood. Controlled, purposeful blood. I can almost smell the metallic rapids.
No matter how many days, weeks, months go by without splitting my skin the connections remain. My broken brain leaps from trauma to maladaptive solution with confidence. I must convince myself all over again that blood isn’t the answer.
Don’t find that box
Don’t open it
Don’t slip a fresh blade on the handle
Don’t find the perfect spot
Don’t drive the scalpel in
Don’t let blood trickle & flow.
I know this trick too. Sheer force of will. I will not. I can not. I do not.
I have not for so long. I’m ‘recovered’. No one told the deep dark core of me. That fucker still yearns for it. Not every day. Maybe even not all that often, but I know it’s there. I know how fast the urge can rise. And, oh, I know how hard it is to continue saying no.
I can’t say with any certainty that these thoughts will ever completely leave. I’m like an alcoholic who remembers the relief of the first hurried gulp. Knowing that carnage follows is enough to stop me raising the glass. I just don’t think it’ll ever kill impulse.
I’m good. My life goes on. Tomorrow could be wonderful. I’m tired, though. It would be nice not to have to fight so hard.
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Do you have a voice in your head? Your own personal narrator. Don’t forget your purse, ooh that’s a nice skirt, my head hurts, what should I make for dinner, did I answer that email? I’ll sit down at that next bench…
A running commentary guiding you. Questions, ideas, reminders. Busy, busy always going. An echo of you, so constant that you often aren’t even fully aware of it. Still there when you need it, though. Working through options when you’re not sure which is right. Slowing your tongue before it spits out something stupid. It searches through your memory catalogue and sounds an alarm when you might be missing the danger. It’s useful. A comfortable, familiar accompaniment to life.
Sometimes that voice goes rogue. It’ll bark at the slightest disturbance. You drop a cup & you’re a dickhead. It starts warning off attacks that aren’t coming. Tells you everything you’re doing is wrong. Maybe sometimes you are able to make peace. You both pause, think again and agree that perhaps that assessment was too harsh. Deep breaths or a task accomplished might win the other you over. On other occasions the voice knows its right. All aspects of your life are disastrous and you are entirely to blame. The inner critic skewers you; drives a fresh hole through all your crap.
It takes training to win a battle with yourself. You must master tricky moves to quiet the bitch in your head. There must be people who manage it. I’ve yet to completely get the knack. My internal voice is spiky. She (I) love to find myself at fault. Guilt comes easy and in no proportion to the perceived sin. My head is well versed in all the hurtful language I rail against. Dismissing your own internalised ableism, fat phobia, capitalist propaganda is tougher than talking down some third party arsehole. Anyway, to a certain extent I have accepted that my silent commentary will always do this. I’ve learned to challenge the initial thought. Wrestle it into logical submission. Sometimes I win , sometimes I lose, but I expect the onslaught.
Which brings me to why I’m engaging in this session of blog therapy. Lately, the voice in my head has developed new habits. She has us on perpetual clueless alert. My warning siren is stuck on active. I can’t calm down. However, when I question the need for this hyper vigilance the know it all in my head has zero answers. In fact, I can’t find answers for much at the moment. When I request help my internal dialogue tells me it doesn’t know.
What am I scared of? I don’t know.
What do I need today? I don’t know.
What should I eat? I don’t know.
Who will I pitch this to? I don’t know.
Should I take more painkillers? I don’t know.
Is this good enough? I don’t know.
What do I want? I don’t know.
Did I say the right thing? I don’t know.
Am I ok? I don’t know.
I’ve been anxious & uncertain before. Decision making has always given me trouble. I’ve just never had such a blank in my head. There’s always been a conversation. Typically I’d scroll through all the things in my life that could be a concern. I see it through to the worst possible outcome & decide how I could manage that. Once I’ve tackled that I can be less consumed by the worry. It’s not a perfect solution, but I have some success with it.
At the moment, there is no discussion to be had. This is free floating anxiety ALL THE TIME. I wake up jittery. I lie in bed nervously trying sleep and I am on edge every minute in between. Identifying real worries has no impact. At the end of that process the voice in my head is still shouting panic! I’m not a stranger to unresolved aniexty. I have PTSD, it comes with this territory. I’ve dealt with episodes of hyper vigilance. I do react to triggering stimuli. I’ve been in the depths of unknowable depression. This just feels very different.
The barbed inner voice can usually be relied upon to give me something to work with. Even if my instincts are brutal, I have a jumping off point. Now everything is so vague. I’m stumbling around in a room full of nothing. This isn’t a period of great change. I am not attempting to make life changing decisions. I have no idea what is going on & neither does my brain.
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I’ve been fairly quiet on the blog front. Clearly we’re all under some pressure, but I’ve also been dealing with some bonus pain. I’ve had episodes of awful symptoms which signal that my pancreas may be acting up again. It’s been a while since I’ve had to deal with pancreatitis and I am scared of a comeback.
The pain triggered some really desperate memories. It also gave me lots of time to ruminate on how PTSD never stops giving me unpleasant surprises. The nature, frequency & severity of my reaction to trauma stimuli is forever changing. In my (also unending) quest to de stigmatise mental illness I thought some recent triggers might be worth sharing.
Waking up in the middle of the night to pee is not a thing that I do except during pregnancy. I’m a hold ‘til morning girl. The frustrating sensation of leaving a comfy bed & stumbling to the toilet in the dark is one I associate with pregnancy. Sitting on the toilet half awake looking at my painted toes I had the trauma version of de javu. My body remembers this. The exact emotion. The precise thoughts. I’m ok, but I know I won’t be getting anymore sleep. I’ll be distracting my head from going back there. Lying still in the dark would be asking to feel things I don’t want to feel.
Sometimes to occupy my mind through those sleepless hours I watch crap tv. Ideally something I don’t have to concentrate on. Mildly entertaining 90’s sitcoms work a treat. That is until the wife in King of Queens is unexpectedly pregnant & then just as they’re getting happy about it, not pregnant anymore. Numb viewing to uncontrollable sobbing in 20mins or less.
A fun park adventure with the rascal is momentarily derailed when someone calls me his Mummy. I smile, correct them & return to my role of bad octopus pirate. I feel the impact, but I look steady. Until much later when the memory of all the babies who’ll never call me Mummy knocks me flat.
I wake up bloody because my period has started in the night. I’m not inconvenienced I’m terrified. Those cramps ripping through my pelvic region signal disaster. It takes a bit of time to centre myself in the now. Repeat, ‘I’m ok’ over and over as I drag myself through a shower. Tampon, comfy clothes, paracetamol. I’m almost calm by the time I return to tackle the bedding. I’m genuinely shocked when the sight of blood on sheets sets me trembling. I was devoting all my attention to not getting sucked into one trauma hole that I forgot about another. I have to sit on the floor but I’m still watching an old iteration of myself. Younger, sicker me is ripping bloody sheets from an entirely different bed. More than the sheets are stained. My body is raw & dripping. I feel as exhausted now, in my healed, safe body as I did then in that recklessly butchered one.
My stupid period tracker with its stupid unwanted alerts. High chance of pregnancy. Such a simple sentence triggers such complex crazy. The stress and hope of trying. The heartbreak of failing. The unwanted reminder of how few of these high chance days may be left. Fleeting recollections of disappointing perfunctory sex and an even more disappointing man. Wearily buying tests. Angrily buying tampons. Wanting the monthly reminder to be over and fearing that end. Wrap it all up in a hollow ache in my middle that never leaves, but echoes as I read those words and you have my condition.
My ridiculous cat managed to injure his paw and now I must try to keep dressings on until it is healed. If you know anything about cats, you’ll know what a challenge this is. I have experimented with various ideas none of which preserved his dressings for long. I started thinking he needs a sock & then remembered I had some baby socks. They must have belonged to one of my nieces or nephews. Baby bits and pieces will end up in your hand bag/pocket after a day of auntying. I seized upon the long lost sock as the solution. I didn’t feel sad or even link the tiny item to anything painful until I started trying to put it on my cat. Then from nowhere I was flooded with too many feelings. I love my boy, he’s wonderful. Still, I couldn’t avoid the fact that he’s the sole recipient of my mothering.
A character in the book I’m reading is trying, with difficulty, to explain why she feels guilty for various past events. I feel as though I have taken a deep breath & inhaled fictional strife. My own twisted guilt is equally hard to comprehend. For me, self reproach is as essential as oxygen. The chord of perplexing guilt could catapult me into a multitude of memories. This time I land flailing in the aftermath of standing up for myself. I can feel the certainty that so recently fizzed go flat. That overwhelming sense of this must somehow be my fault returns. I feel angry about all the shit I put up with, but I still can’t fully convince myself I’m not to blame. Now I’m full of guilt for events long passed. Today is ruined as I attempt to untangle things that never made sense to begin with.
Triggers lurk. Sometimes entirely unexpected things stir up pain. It can be fleeting or set off a chain reaction. I have adapted to a life with booby traps. I often appear untouched, but only because I work so incredibly hard at hiding the mess.
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Something in the way she moves... 
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