Be running up that hill…

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.

Is it really ok?

‘It’s ok not to be ok’. I can’t remember when it started, but it certainly picked up steam. It’s now the standard social media friendly, I support mental health awareness tag line. I know it is well intentioned, but increasingly, it doesn’t ring true.

Of course, in theory, it is true. It is normal to experience mental health issues. It’s fine to admit that you struggle. It is important to normalise mental illness. If you say it out loud, I am not ok, what happens next? If you’re lucky someone listens; someone cares. Maybe they ask what you need. Perhaps you get that help. The first time. Maybe.

It’s ok not to be ok in orange text with green quotation marks

What happens when the person you tell has no idea how to respond. What if you spill your guts to a doctor who doesn’t take you seriously. Or who does want to help you, but only has waiting lists to offer. Around 70% of those referred for mental health assessment in Scotland wait at least 18 weeks*. That’s a very long time to feel helpless, especially when there is no guarantee of treatment. What do you when the not ok doesn’t go away? Or if it keeps coming back? You try really fucking hard to be ok. You do the therapy and the meds and the hard work. It takes a long time. It’s gruelling and painful. All the time you know lots of people aren’t getting any treatment. You feel guilty that your receiving assistance that others aren’t. Even more so when the help hasn’t helped. You’re aware that the people who love you are scared. Your hurt hurts them. They want ‘ok’ as much as you do.

And you want it for them. When it slips from your grasp it’s harder to say it again. People have their own lives. Sometimes they might be struggling. Or they may be fabulous; enjoying some well deserved happiness. Everyone has stresses and responsibilities. Our lives keep us busy with the good and bad. Everyone must earn a living, manage their relationships, have fun. Who wants to be the person who complicates that? Not me.

When you’ve already done everything you’re supposed to do it’s hard to know how to banish the cloud. If the expert advice doesn’t do the trick how can well meaning friends help? Even when you really want to reach out there’s always an impediment. You don’t want to add extra strain when they’re in trouble. Nor do you don’t want to darken joyous life events. Sharing begins to feel less a problem halved & more a problem spread.

Very few mental health problems are a simple fix. None of the big issues in life are that black & white. When you fall back into the grey it’s terrifying. Especially when you know you’ve already had your shot. Ask anyone who has tried to access mental health services after discharge. It’s almost impossible. Drs will say you aren’t sick enough for referral. The NHS lacks the resources for early intervention. Access to talk therapy is limited. Almost 40% of those who received treatment reported that they did not have sufficient sessions**. Cognitive Behavioural Therapy is by far the most frequently offered intervention. Not because it is the most suitable, but because it is the cheapest & easiest to administer. Recovery is hard enough with appropriate support. When treatment is bungled it can do more harm than good. As already stated, re referral is doubly hard.

While you wait or fight for professional help (that may never come) your life is disintegrating. Friends who were initially supportive fade away when you never quite get all the way better. Employers sprint. They’ll talk a good game; train a mental health first aider or make a donation. Test their commitment with sick time or requesting accommodations & watch them run. You are left with the people who care enough to stay. Your predicament remains. You don’t want to worry them. You don’t want to ruin anything or be the thing that tips their bad news scale. It’s never the right time. We all want to believe that catch phrases are enough, but buzzwords will never cut it. What happens after I say I’m not ok?

The truth is, more often than not, nothing. The pandemic has only increased strain on an already buckling system. I don’t have all the answers. I do know that a cute Instagram post during an awareness month isn’t it. We need huge institutional shifts. More money, more training, more oversight. Our political representatives need to know that we want action. 1 in 4 adults will experience mental illness in their lifetime. Telling them that’s ok isn’t enough. We have to be advocates.

If someone in your life is suffering without help you can contact your Mp & express your concern.

Find out how long waiting lists are in your area & ask you Mp what they’re doing about that.

Stop voting for people who are actively defunding our health service.

Be proactive. Ask loved ones what specific help you can provide.

Use your social media to contact politicians directly. Ask questions publicly. Embarrass those whose voting records go against their constituents interests.

Accompany a friend to appointments if they require support. Insist that interactions are recorded in medical records.

We have to demand more of ourselves and of those with the power to make changes. Truthfully, it doesn’t feel ok, not to be ok.

Open shouting mouth with the text your voice has power

* Information Services Scotland ** SAMH

Word therapy…

On one of my recent insomnia fuelled drives for distraction I stumbled upon an interview that persists in my thoughts. It was Anderson Cooper discussing grief & loss with Stephen Colbert. Both had significant losses early in life. Anderson talked of wishing he had been physically marked by the experience. This is of course a reality I am familiar with. Which led to some slightly self indulgent word therapy.

He talked about how he felt it might be easier to have a permanent sign of the damage so that others may be aware of his condition. An idea I suspect he’d soon realise the error of if he actually did bear a mark of loss. He continued that he thought people should know that he wasn’t necessarily the person he should be. Tragic events had diverted him from the person he started life as. This concept felt lifted from my very own brain. Of course much thinking ensued.

When Anderson talked of being marked he suggested a scar running down his face. His reasoning being that in the wake of his mother’s recent death people had offered condolences, but also shared their experiences of loss. He found this sharing to be comforting and it’s not a thing that generally happens. The scar would show his pain & people would feel able to have those conversations. Colbert agreed in part as he recognised the feeling of his loss being a continual part of his life, whilst the world at large rarely considers it. All sentiments I relate to. I do often struggle with just how often I think of my babies when they’re rarely acknowledged by anyone else. That led me to ask myself questions I had thought settled.

I understand their reasoning, my experience just doesn’t bear it out. The look of my self harm was never a factor I gave much thought. Outside of the need to hide it from others, the visual of impact was a non issue. I never cared. Ugly scars were just a by product of a necessary thing. The pain & blood & release & expiation were essential. If mutilation was a consequence of that so be it. I don’t think it occurred to me that I had another option. Yet, now, clothed in the aftermath it does seem fitting.

If I could exclude third party reaction it would make sense. I can see a twisted symmetry in my flesh being ravaged, but still living. At my core that’s how I feel. I contributed to my destruction and then I toiled to repair the ruin. Of course, you can’t escape the opinions of others. Those who care about you are hurt by the reminder of your pain. Those who don’t know you are as often cruel as kind. Carrying your story everywhere is a complicated matter. Anderson might end up preferring the anonymity of a metaphorical scar.

The second part is harder to reason. For a very long time I wanted nothing more than to be the person I was before. It took me years to accept that wasn’t possible & several more to realise that wasn’t my fault. I still missed that fun, capable, handle it all girl. Still wondered what she may have become, but I didn’t hate the me that life had created anymore. Little by little I learned to like myself. I started to believe that might be able to take all the broken pieces & make something beautiful.

The universe had other ideas. It really does enjoy smashing me up. Each time I lost a bit making a whole seemed less & less likely. Now that I know for sure how unlikely, those other mes feel important again. I keep thinking about who I could have been. Which variation of myself was I supposed to be?

I can’t help but imagine that original version of myself would have made a shinier, happier life. That 19yr old was a powerful force. She’d have been unstoppable at forty. Even if I’d sustained the original hit there all there a still multiple variants. All these possible lys that could have existed if you subtract chips along the way. Sure, that could probably be said for anyone; I just don’t know if everyone can so clearly identify the points of impact. It makes it easier to compare the before & after.

I had made peace with the person I am. I don’t reject her now. The what if’s have simply grown louder. There could have been so much more. In the end I don’t care about the scars. I’d even take Cooper’s imagined facial disfigurement if it gave me a chance at one of those parallel lives. The older I get, the more certain I become; I want the more.

Watching the wheels go round & round…

I’m almost a year into lockdown. There were a few fun outings last year, but for the most part I’ve been home. Man alive, I’m fed up! I’ve reached the take comfort wherever you find it stage. Turns out that’s some random locations.

Old crime shows. Not flashy American ones. They’re too full of hero talk & ridiculously good looking people. They offer no comfort. What I like is late 90’s gritty UK stuff. Proper dark crimes with complicated twisted characters and very few happy endings. It probably speaks to my craziness that these are the tales I seek solace in, but hey ho.

Posters for waking the dead, wire in the blood and cracker

Tic Tacs. I’ve no idea why. A pack of cherry cola ones came free with something I ordered and now I am hooked. I’m not usually big sweetie eater, but sucking on these seems to really help my concentration. Is this some kind of regression to infantile soothing? Who knows. They’re damn tasty, so I’ll carry on.

Candles with fresh outdoorsy scents. Perhaps because I never go anywhere & I miss the world. Probably also because my cat won’t stop farting. Either way I’m obsessed with anything with a whiff of the sea or a refreshing mountain breeze.

White roses in a vase, candles, photo frames on decorative table

Lists. If it isn’t on my to do list I will definitely forget all about it. Lockdown has made this habit rather more frenzied. Every minute activity must be noted & crossed off. I think it might be a reaction to living such a restricted life. I suspect breathing will be included very soon.

Fleecy bed sheets. I’m obsessed. Bought one set on a whim and now want nothing else on my bed. They’re so unbelievably soft and warm. I’ve purchased another complete set and loads of fitted sheets. This way I can have some fleecy goodness with ever duvet set. It’s the closet thing I can get to a snuggle mid pandemic.

Grey fleecy bedsheets

John Oliver. The man is a marvel; smart, funny & genuinely decent. I’ve been rewatching old episodes of Last Week Tonight and finding interviews on YouTube. It boosts my sense of well being to know good people exist in the world. If they can make me laugh out loud all the better.

John Oliver laughing

My sign is vital, my hands are cold…

CW: Self Harm

Lately I’ve been having regular checks for the heart rate thing. The nurse who took my blood & vitals last week was really familiar. I had that strange I’ve definitely met you feeling, but also knew I didn’t know her, know her. I couldn’t place her at all until a loud clatter startled her. Her sharp intake of breathe shot me back in time.

She was the nurse I stunned with my self destruction in this same hospital many years ago. She either didn’t recognise me or correctly judged it best not to indicate that she had. She was friendly & kind, but the sound of that inhale shook me. I was back there, covered in blood & guilt.

I can so clearly remember walking into that triage room. Concisely explaining why I was there & seeing the doubt in her eyes. I could tell she thought the large towel on my arm was overkill. I knew she was weighing up how to nicely dismiss me. I was too tired to do anything other than unwrap the makeshift dressing & expose the truth.

Foggy picture of cars outside hospital. Words ambulance only painted on ground

The inner layers were blood soaked & the final one stuck to the wound. When I yanked it off with same the lack of self care that had led me to that room, she gasped. An entirely involuntary expression of what; shock? disgust? fear? I couldn’t discern, but I knew it wasn’t good.

The speed that she whipped through the triage routine was more about her discomfort than mine. I had long lost my objectivity. I sought treatment as a means of calling a halt to that cut. I had given up seeking enough. I knew that enough was a lie. When I looked at my arm I really couldn’t tell anymore if it was any worse than anything else I had done to myself. It was just another failed attempt to carve out some peace.

Peace that I knew was never coming. I already felt stupid & ashamed & so horribly guilty. For all the usual reasons and now also because it was obvious I had ruined this women’s night. She hadn’t bargained for my level of determined self loathing; I’d upset her. I felt selfish for not being more clear. I shouldn’t have allowed anyone to be caught off guard.

I wanted to be better. Do better. I wished I could give this nurse & everyone else the explanation they needed. I yearned to be somewhere else. I didn’t even want to do this anymore. My blades had long since lost efficacy. I could never cut deep enough. Never shed enough blood. The quiet I needed was evermore elusive. I was desperate and so fucking tired. Yet, I still couldn’t stop.

As I waited for her to finish with my blood pressure I was stuck in the past. Mired in the dread. Reliving the experience of having my arm stapled shut whilst already planning the next assault. Knowing I couldn’t escape the nagging voice in my head that insisted I must cut. I must earn any rest. I had to atone for sins I wasn’t able to articulate. I had to release all the fetid emotion with my blood.

When I left I felt blessed. And cursed. Blessed that I was wrong. I did escape. I have hushed that internal need for penance. Cursed because I still haven’t silenced it. There will always be triggers pulling me back. Days when my scars itch to be opened. You can’t play with fire & not get burned. The magic is remembering I know how to make it stop. I just have to wake up every day and choose this new, better life. Easy, right?

Black and white photo oh plus size woman looking at scarred arm

Help me if you can, I’m feeling down…

Are you losing the plot yet? I fear I’m getting there. Lockdown is getting harder. If like me you already have less than perfect mental health, you may be closer to the edge than most.

I’m with you. I’m finding all this time alone is churning up lots of issues I would prefer remain undisturbed. The isolation is leaving far too much room for pondering big issues. Existential questions that I couldn’t answer before the world went mad & are even more confounding now. I swing between Groundhog Day dread and being on jangly high alert. Trying to break the monotony of another day home alone by sorting your underwear drawer is a tiny bit depressing. My already racing heart attempting to burst right out my chest every time my noisy neighbours thump really isn’t fun either.

Am I doing anything that matters? Am I running out of time & is this pandemic melting huge chunks of what is left? Can I continue to makes ends meet? Am I doing enough for those who can’t? Can I get a Tesco delivery slot or my prescription? Will I ever get rid of long covid? Will all my loved ones get through this unscathed and will we ever be permitted to be in the same room again? This shit is only the tip of the iceberg. Beneath the surface are all the intrusive thoughts and fears of catastrophe.

Image of iceberg above & below waterline. The sea is vivid blue.

I say this with the knowledge that I am in a privileged position. I have security & a support system that many do not. Too many people are living in situations that are perilous in every possible way. Accessing even the most basic of assistance is getting harder. Half a carrot, a handful of tuna & frubes will not feed hungry children (if you don’t understand this ref, read this & try to control your rage). When you can’t rely on the system to ensure kids don’t starve you can bet that mental health services are in distress. A fact that has been keeping me awake at night as I worry about my own mental wellbeing.

With that in mind I wanted to share some resources. If you don’t feel you can wait to reach the top of an nhs waiting list one of these may be helpful.

Theses organisations offer reduced cost therapy.

Arbours Association

Frontline Therapist

Problem Shared

The Guild of Psychotherapists

Dedicated to Change Project

The Spark

Sandyford Glasgow

Most universities & colleges offer counselling services. If you are student it’s worth checking out what help your institution can give. Many also offer low cost therapy with students training in psychology disciplines.

You can find online support here:

Samaritans

Mind

Calm

Age UK

Women’s Aid

Beat

The Mix

Childline

There are also local services across the UK, a bit of google research may lead you to affordable (or free) help in your area. I know that none of these options are perfect, I wish I had the answer. In the absence of a complete solution I hope these options might be helpful.

As always when discussing mental health it is important to state that I am not a professional. Please seek advice from your GP in the first instance and contact emergency services if required.

You wear it well…

We have a new strain and new lockdown. Infection rates are rising. As are long covid cases. I can attest that the long term symptoms are a struggle. Now is not the time to get lax. Please stay home as much as you can. Wash those hands every opportunity you get and wear a damn mask.

With a mask you can show that you care about the welfare of others and make a statement. Facemasks don’t have be boring, go for it!

I have a Sara Conde and I love it. Handmade, three layer with a nose wire. It’s super comfy & she has the cutest prints. Who wouldn’t want all these beautiful boobs on their face?

I’m a loud & proud feminist, so this amazing design from KultKutie Handmade rings my bell. If you want to support the sisterhood & public health, this is the way to go.

The advent of masks has scuppered our lipstick game. If you’re missing a big bold lip, KhaatiMeethiLondon has got you.

Fuck the Tories can do no wrong in my eyes. This lyrical beauty gets your point across with a little humour. Three layer with a filter. You’ll feel safe & sassy.

If like me you are prone to losing things DearSoho have the cutest fix. Chains that will up your cool factor and ensure your face mask is always at hand.

Rainy days & Sundays…

Always get me down. Today is both. Although if I’m honest it doesn’t have to be either. There are days when I just wake up sad.

There’s no reason outside all the reasons that existed when I went to bed. No trigger, no resolution. Everything just feels pointless. If I burn a piece of toast I am utterly useless. If someone doesn’t call it’s because they hate me. Then I know I’m over reacting and I hate myself.

My thoughts get stuck in a loop of painful circumstances. All the things I cannot erase or redo. I inhale all the blame and forget to exhale the guilt. So, it lives somewhere inside me. Dormant, but never extinct.

Maybe tomorrow I will be ok. I’ll return to regular levels of coping and carry on. Or this woe will continue to spew. It could be weeks or months of life coated in depressive ash. I never know.

There is no cure; other than keep going. Hoping this eruption isn’t the big one. Putting faith in my ability to outrun the thought of diving right into the burning mess.

Next Sunday could bright. Or the one after that. There will be days to breeze through again. I just can’t feel it right now.

Dead roses in a vase and their shadow

Build me up…

It’s been ‘ugh’ for a while now and I’m in danger of wallowing in a big puddle of woe is me. I’m making efforts to feel better. I started by tackling my inbox and then tried to clear some light housework. Ticks on my to do list helped me feel less useless. Now seems a good time to build on that by counting my blessings.

So, today I am grateful for,

My big comfy bed (& no one snoring, farting or otherwise bothering me in it).

My fridge holds soups & fruit juice galore. My stomach only wants these & the occasional bread product.

My demanding little purr ball.

Black & white cat with his eyes closed having his ears rubbed.

Excellent new Jim jams. They have pockets and are so soft I keep stroking myself.

Ly is taking mirror selfie. Smiling & wearing pink jammies

Hot running water.

The sick & ridiculous humour of the Small Town Murder podcast.

Small Town Murder podcast logo

A plethora of supportive & loving people.

All the perfect little ones said people have made.

The writings of Sara Pascoe & Barbara Trapido

Free and accessible healthcare. Big love, NHS.

Red love heart and NHS in white letters

The freedom to drift in and out of sleep as needed.

The phone steriliser relieving covid related iPhone anxiety.

Messages of love from my big muffin.

Text message with sad alien face

Lemon & lavender scented heat pads.

A room festooned with beautiful blooms.

Various bunches on flowers in vases. Sunflowers , roses, lilies, berries, gladioli