Tag Archive for: PTSD

The Best Seats of the Show

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There are six seats across the middle section of the front row of the auditorium. Our seats are the middle two, the front, middle two seats, the best seats of the show.

At Christmas, I had opened the envelope with trepidation, it was slim and light and not a real envelope but an A4 sheet of paper, origami’d into the rough shape of an envelope and sealed with a piece of sellotape that bears the thumb print of my husband. I imagined the tip of his tongue poking through his lips, the gesture he does unconsciously when he concentrates, as he formed the package and tore a strip of tape to hold it all in place. It say Mrs C on the front in blue biro ink and he hands it to me on Christmas morning as we sit in our pyjamas with plates of reheated croissants on the coffee table and glasses of Bucks Fizz in our hands.

Inside is a sheet of paper with the home-printed tickets and the performer’s masked face looking out at me. Tickets for a live recording of the Blindboy podcast in June the following year, just after my birthday. I make a yipping noise and smile a real smile with teeth and a little too much gum as I excitedly lean over and kiss him in gratitude of the very much wanted gift. I had been hinting. Well, the type of hinting you do to a neurodivergent person, of sending links to the ticketing website saying “I’d love to go to this”.

We decided a few years ago, that we like to get experiences rather than things for gifts. When you have been together for nigh on 27 years and have a reasonable income, your children are adults and need you less and if you really want something, you buy it yourself, buying physical gifts becomes quite difficult. Neither of us are bothered about fancy stuff, we love a charity shop or a car boot sale, we like to make do and mend and find joy in saving stuff from landfill. We moved to a village last year and within six months became known as the Wombles, as we will take in any junk people are getting rid of. And by junk, I mean treasure. No, of course you shouldn’t put those original church tiles in a skip! Drop them on our drive and we’ll find a purpose for them. You have an old pond liner? Well, we better build a pond hadn’t we! Since moving here, we have been gifted greenhouses, sheds, paving slabs, wood and books that villagers would rather drop on our doorstep than drive to a charity shop.

We decided that we get more pleasure from ‘doing’ something, than ‘owning’ something and so gig tickets, podcasts, plays, days out, afternoon teas and similar jaunts have become the norm for gift buying between us. I found the Blindboy podcast accidentally a few years ago, sometimes I fall into a Spotify hole of clicking the ‘More Like This’ button. My usual podcast go to’s are true crime and so I wonder how many clicks it took to bring the soft, Limerick drawl into my earholes that made me pause. He was talking about a “mental health plan for when the news is overwhelming’ and his opening gambit was asking ‘What’s the craic, you anaemic queavers?’ As the faint piano notes play in the background, this gentle voice spoke to me about these Big topics with beautiful profanity and poetic truths and I was hooked.

So the day has arrived. We travel an hour to the city and spend the day as tourists, something you rarely do in your own home town. We looked up, admired the shapes of the buildings and the signage of old, we paid £10 for two 99s, we meandered around the town centre like the pigeons that were everywhere and watched a man who had a huge owl on one of those gauntlet type gloves entertain two young boys who shouted with glee when he showed them the pellet of desiccated bone and fur that the owl had hacked up earlier that day. I notice more detail that I do at home, but I also seem to notice more detail that many people around me in general. My mental health is shot, drowning somewhere between cPTSD and anxiety, I am Working On Myself. Therapy and drugs and thinking and looking inwards and being a detective into the details of my life that we often push deep down into a big bottom drawer that we have to put our foot on to shove all the stuff down and be able to squeeze it shut again.

I have learnt that I am an introverted extrovert. I love a stage. I love to speak. I had a radio show, I interview people, I do public speaking. I am ‘showy’, I dress like a cross between a pensioner who no longer gives a fuck and a toddler who is attracted to bright primary colours, stripes and spots. I write about my inner most thoughts and put them on the internet. I take photos and videos of myself. I laugh loudly. I sing to myself in the supermarket. I love being on a stage. I am an artist. I am an extrovert.

But I also have crippling social anxiety. Put me on a stage and I will gladly regale you with stories and laughter and intrigue and heart, I’ll laugh with you and cry with you. Put me in a social situation and my chest pounds, my jaw clenches. I become awkward and clumsy. I will say the wrong thing and then point out that I said the wrong thing and make everyone feel more awkward that I said the wrong thing and then cringe into my own soul as this cycles into horrific silence. I will be the one who trips over or breaks the glass. Who tries to be the fun person I am on stage but then speak too loud as if I am projecting to the back of the room rather than speaking to your aunty in a small backroom of a pub.

My mind whirs with remembering How To People. Should I speak now as there is a silence? Oh no, their face has frozen as I tell them that I read about Wombat’s arses and how they are so tough that they can break a fox’s neck. That was not the right topic. I should smile, they are now smiling. But in 1989, someone told me my smile had too much gum in it and now when I look at photos of me, there is a lot of gum and I sometimes look a bit deranged, so I should do a moderate smile, one with less teeth and gum. She is smiling with her mouth closed, I’ll try that. Timm looks at me, his brow is furrowed, he leans over and whispers “Are you in pain?” “No”, I say, “I’m doing a Moderate Smile”. “We’ve talked about this Sam” he whispers back, “it’s fucking weird, just smile, you have a lovely smile, or don’t smile! But stop with that weird face.” I nod, solemnly, he nods back. Then I am quiet and thinking about how nodding is a weird thing. Why does up and down mean yes, and side to side mean no?

We arrive at the venue and headed to the seats. Our seats are the middle two, the front, middle two seats, the best seats of the show. I can’t believe it, this is very exciting. We sit down and I start thinking about how Blindboy might see me and think to himself that I look quite fun and then we become best friends and he will call me and say ‘What’s the craic you heaven sent Kevin?’ and then we will talk about the smell of rain and the birds whose call sounds like two marbles clacking together. Timm and I take a photo of ourselves, I share it on instagram, congratulating him for getting us the best seats of the show. He is drinking a lager shandy and I am drinking a pint of lager, they cost £16.50 and I am working out how much each drink must have cost.

Four people arrive. They do that thing of looking at their seat numbers and counting the seats. I am dividing £16.50 but then wondering the difference in cost for half lager, half lemonade versus a full lager. “Oh no!” they say, “our seats are split!” we look up and I wonder how they ever thought that 18 and 19 could be next to 22 and 23. We awkwardly smile and they stand in front of us staring, shuffling and waiting. The guy tells us that they are all together so can we just switch seats so they can all sit together? It’s no big deal! My eyes shoot down, I don’t want to move, these are the best seats in the show. But I am a people pleaser and cannot stand the awkwardness, I know I’m about to blurt out that it’s fine and then feel sad about this series of events that mean I now have slightly worse seats. Timm speaks up. “No, sorry pal, she is very excited about being in these seats.” They stare and then split apart and sit either side of us. The man says that there is a monitor right in front of him now. I stare at the ground.

My ears are full of the sound of blood going in and out of my heart, I feel hot and shrink back into my seat and the two couple speak across us. I feel small and mortified and question if we are in the wrong. Should we have just moved? It’s not that big a deal is it? I know if it were any other seats I would have moved. But these are the best seats in the show. And I don’t want to sit behind that monitor. And it’s fine, they bought those seats knowing. And we bought these seats. And it’s not even sold out, so they could have bought other seats all together. And Timm must have been first on the website to buy these seats. That’s so nice to know. And we’ve had a shocking few years with my health. And I am in a lot of pain. And Im using my walking cane today. And they are sat down now. And this is all in my head. And they probably just were chancing it. They probably don’t hate me. Unless they do. And maybe they are fuming. And maybe I just ruined their night. Am I being selfish? I’m not being selfish. This is OK. This is awful. This is fine. This is terrible.

My brain is full.

But I am Working On Myself remember. So I can CBT the shit out of this. I know I could easily tumble into this whirlwind of self doubt and insecurity and anxiety and sit in the audience of my favourite podcaster and not hear his words as they are drowned out by my inner demons. But I also know I have the ability to recognise this and stop myself. I whisper to Timm that it’s so awkward, that I am mortified and that I could ruin this for myself. He whispers back “let it go, leave it behind.”

He tells me to leave it behind when my trauma is so large and heavy that I carry it with me like a terrible one woman moving van, stacks of dishes in my hands as I balance an armchair on my back and loop plastic bags of crap up my arms so heavy that they cut into my skin, the sharpness of the sliced flesh only outweighed by the man sat on the armchair shouting down at me with a megaphone that I am a useless burden. And when Timm sees those moments reflecting in my eyes like a slideshow, he tells me to leave it behind. It’s three words that reset me, that remind me that I have control of this, this doesn’t have control of me. He knows me better than any human in the world and I believe him when he tells me to let it go and leave it behind.

I take a deep breath, I shake my shoulders, flicking off the obsessive overthinking like a cow whips flies away from it’s arsehole. I look at the people. They are not some terrible overlords who demand me to bow down and shuffle away like a serf, they are just two couples who thought they’d chance an ask in a polite way to see if they could sit together. They aren’t the cause of my internal meltdown, I am. My brain feels as though it fizzes, and that fizziness works for me a lot of the time. It allows me creative thoughts, it helps me plan projects and make art. It’s whirliness makes me who I am. But it also has a dark side that makes me hurt.

When we feel anger or hurt, we project that onto others and I have to learn to accept my role in this is the only role that I have any control of. This story could have been a complaint about the people who ‘ruined my night by making us move’. It isn’t the story. The story is of a woman who is Working on herself and learning that the big bottom drawer is bursting open. That 44 years of ‘stuff’ is bursting out of the drawer, it can’t take anymore as it is full to the brim. I have two choices. I can build another drawer, maybe a big chest type one with a sturdy padlock. Or I start to unpack it. Piece by piece. Item by item. Pain by pain.

I choose that option.

I shared this as a spoke word piece over on instagram, so you can check that out here:

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A post shared by Sam Cleasby (@sobadass_sam)

Dreading the Covid test – when past trauma effects current needs

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It has been a weird old year so far hasn’t it. I haven’t written too much about Covid-19 as I haven’t really known what to say and I suppose in many ways, I am just surviving it, getting through. But as it all becomes less of a shock and more of a way of life, it feels easier to write about it. The thing I wanted to write about today is the Corona test and how my past experiences have scared the bejesus out of me…

Getting a Covid test

The NHS website says you can have a test (swab test) to check if you have coronavirus (COVID-19) now. You can choose to take the test:

  • at a test site near you today and get your result tomorrow
  • with a home test kit

You can get a test:

  • for yourself, if you have coronavirus symptoms now (a high temperature, a new, continuous cough, or a loss or change to your sense of smell or taste)
  • for someone you live with, if they have symptoms
  • if you live in England and have been told to have a test before you go into hospital, for example, for surgery
  • if you live, work or study in an area with a coronavirus outbreak

If you have symptoms, you should get a test as soon as possible. You should test within the first five days of developing symptoms. To get a Covid test, apply online on GOV.UK. Or call 119 if you have problems using the internet.

Now I will, of course, get tested if I need to. If I develop symptoms or someone in my household does, or if I am told it is necessary. But here is the bit that is sending me into utter panic.

The Covid test involves taking a swab of the inside of your nose and the back of your throat, using a long cotton bud.

NHS website

Just writing the words was upsetting. And I know I may sound daft, or dramatic. But the thought of something going up my nose horrifies me. In February this year, after surgery and complications, I had to have an NG tube up my nose and into my stomach for a couple of weeks. It was necessary. It helped a lot. But I hated it.

woman with NG tube and a bag of bile

Mind connections

It is interesting how the mind works, the connections it makes. I was incredibly poorly at this time and the NG tube was the least of my worries! I was healing from major abdominal reconstruction surgery. My gastro system wasn’t working. I was in a lot of pain. My kidneys were starting to fail. But it is this little tube up my nose that my mind has focussed in on.

Since then, I can’t bear anything touching my nose. Specifically inside my nostrils. Which is kind of ok as not much touches inside your nostrils! But blowing my nose, or cleaning my nose actually makes me gag now. And so when I first saw the videos of people having the Covid test, I burst into tears. The long swab going deep into the nostril freaked me out. I instantly felt panicked and frightened. The thought of having to have the Covid test done terrifies me.

Now, I am not suggesting that the test is scary. I have friends who had had the test and they have said it’s a weird feeling, it did make them gag a little, but all in all it was easy and quick. And of course entirely necessary. And if I have to have the test, I will do so. And I am sure it is no where near as bad as my head is telling me it will be.

Trauma

But it is things like this, the residue of traumatic experiences, that become a part of your life afterwards. There is nothing anyone can say to me that will make me worry less about this. And as I said, I know logically that it will be fine, that I am connecting a simple test with an upsetting and frightening time in my life. But it feels real.

There are many things, after 9 major surgeries, that have traumatised me. And each trauma is so personal, so delicate, so real.

I struggle to watch infomercials now. How silly does that sound? But when I was having panic attacks in the middle of the night, my husband would put on informercials and we would watch them together. They require no thought, no effort, and the low volume and soft light that filled our bedroom pushed out the panic and tears. But now when I see them on TV, it takes me back to those moments. And I don’t feel anxious when I watch them, but I do feel very sad.

I had a moment recently when I sat on the edge of my bed at 2am. I looked down at my feel planted on the floor and I was back in time. I was back to being at home after surgery, vomiting bile as my kidneys were unbeknownst to me shutting down. I was gripping the bed, seeing the splashes of green watery bile land on the floor. I was panicking, knowing something was very wrong. I was weak, my legs wouldn’t work and falling back on the bed. I was worrying I would die at home, thinking about how Timm would need to get my kids out of the house so they didn’t see my dead body and frighten them. All of this from looking at my feet on the bedroom floor.

The mind is an interesting place. And as I process the difficult and frightening events that I have gone through with my health, all manner of past upsets rise to the surface. Things from my childhood, my teenage years. All the times I felt fearful and scared, upset and hurt, they all come up together.

PTSD

Post Traumatic Stress Disorder (PTSD) has come up in conversation a few times with medical professionals and me. I feel it is probably quite an accurate description of what is going on. But it is hard to deal with those feelings of trauma when you are still going through the traumas every day. How do I come to terms with a past surgery whilst planning future ones? How do I deal with the devastation of pain and suffering whilst simultaneously dealing with the fears of a lifetime of it?

I don’t have the answers I’m afraid. Sorry if you were hoping to get to the end of this post and find five ways you will definitely beat your PTSD…

But what I do know is that for me, the acceptance and understanding of it helps. I don’t keep those fears in, those moments of pure panic, those time machine times where you feel right back there in the bad time. I speak about it and I don’t let it have the power. I talk about it and deconstruct it. I literally pull the moment to pieces.

I tell myself “Well, of COURSE you are worried about something medical going up your nose! That is OK! It would probably be a bit weird if you WERENT worried about it. What happened to you was BIG and SCARY. And BIG and SCARY things take up more space in your head than the small easy times. It is OK. You are allowed to feel this. But it is just a feeling. It will pass.”

Speak up

I tell others about it, I speak to my husband, my friends. Of course, I blog the shit out of it, because that’s what I do! And I find as with a lot of things, for me, talking about it takes the power away and gives me back control. It may not be right for everyone, but if you are reading this and can understand, if you are struggling yourself, then speak to someone. Speak to your GP, ask for support, don’t struggle alone.

And yes, I know how easy it is to write that, oh just go chat with your GP! But in reality, that feels like a mountain to climb. But you aren’t alone. You can deal with this. If you can just find one person to speak to who you trust, then it is the first step to starting to feel better. I believe in you, I understand, you can do this.

Well. This ended up being a little bigger than I first thought. I was laid in bed in pain, unable to sleep and I thought I would write up a quick blog post about how noses freak me out and lay out some info on getting tested for corona and all this stuff fell out of my brain and through my fingers!

Update on me

I will be honest, I am not doing too great at the minute. I am still waiting on CT results. I am in a lot of pain, I struggle to eat. I go between stubbornly eating what I want and liquid/soft diets. I know something isn’t right but I am too scared to think about what that is. I am having weird output, lots of leaks and feeling a bit dehumanised by it all. I am fed up of changing bed sheets (well of waiting for someone to do it for me as I don’t have the strength to do it). I am fed up of poo on my clothes. I am worried about how on earth I will manage doing a degree in the midst of all this (Seriously, what the fuck am I DOING???) I am just a bit all over the place. But there is my update, I will write more soon I am sure.

For now, just be kind yo. Seriously, it is a stressful and messed up time we are living in. Be kind to yourself, be kind to others. And as always, I love to see your messages and comments. I do try my best to reply to everyone but sometimes that is a bit overwhelming but know that I do read each and every one and they make such a difference.

Peace and love

Sam xx

My 6 week post surgery check up

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This morning, I headed back to hospital for my 6 week post surgery check up. I had two hernias fixed in my last surgery, a parastomal hernia resolved, my stoma resited and abdominal reconstruction. It was a big operation and was my 8th surgery since 2013.

6 week post surgery check up

I’d been warned that it was going to be a very tough recovery. That I would need 2-3 months off work and to prepare for a lot of pain. Its been a tough 7 weeks but I am really pleased to say that everything has gone well and my recovery is right on track! I am still swollen and have some hard lumps of scarring but they are happy with the results.

The check up was with one of the surgeon’s team. The doctor examined my stomach and talked through all of my concerns. I felt very nervous that he was going to find some complications but he said I was doing better than expected. I am feeling really relieved. Thanks to Timm for driving me and being there . We talked through all the questions I wanted to ask before so that he could remind me if I forgot once I was in with the doc. If you don’t have someone with you at your appointment, I suggest writing a list as it’s easy to forget!

Timm and Sam Cleasby 6 week post surgery check up Sheffield northern general hospital

Back to work

I am signed off work till the end of June and they’ve suggested a phased return to work from July. I’m both nervous and excited about this. I work for the disability charity Scope and they have been so supportive to me during this time. They haven’t put any pressure on me and have supported me in taking the time I need to recover.

I also present a radio show on BBC Radio Sheffield on a Saturday morning from 10-12 called Nowt So Strange As Folk. I returned to that a couple of weeks ago thanks to Timm being my chauffeur. It’s only 2 hours a week but it’s mentally tiring. I have been coming home on a Saturday and spending the rest of the day in bed!

Exercise after surgery

We have discussed my recovery moving forward and at the 6 week post surgery check up. The doctor said they were happy for me to start an exercise regime. I am joining the gym and will be seeing a personal trainer as part of my physiotherapy.

I stopped smoking in February this year in preparation for the surgery and I’m happily now a non smoker. This is so important as there’s a link between smoking and recurrent hernias.

I am also aiming to lose weight and get much stronger. I’m currently classed as overweight and this can mean I’m more likely to get another hernia. It’s been an awful 6 years of recurrent hernias and so I need to do everything I can to reduce my risks. I’ll blog more about the exercises Ill be doing after I see my PT in July.

Mental health

I have been quite up and down mentally, it’s really tough to be stuck in bed unable to be independent. And even more so when it’s the 8th time in 6 years! I have slipped into depression before after surgery and so it’s at the forefront of my mind to take care of my mental health.

One thing that has been difficult is that I am reacting to certain things that make me feel right back in that hospital bed. The other night I was flipping through the TV channels and I happened upon a real life hospital show. .I paused and watched a patient in a bed writhing in pain. The doctors and nurses were rushing about, the machines bleeping, and I felt my chest tighten. I felt jittery and panicked and a fear washed over me. I was sweating and struggling to breathe.

A similar thing happened the other night. My ileostomy bag leaked in bed. It was only a slight leak onto my skin, I caught it before it went on my sheets. So I cleaned myself up and changed my bag and then saw a air freshner spray that had been in my hospital bag. I sprayed a couple of squirts to cover any poopy smells in my room. That smell of the spray immediately took me back to being in the hospital bed and I went into panic mode again. After talking to a friend I recognise that certain sights, sounds and smells are triggering me. This is common with people suffering from PTSD (Post Traumatic Stress Disorder).

So though I am feeling positive for the future, I am aware that my mental health has been affected by all of this. I have started back on my antidepressants and I am really focussed on looking after myself. From meditation to self care, planning to spend time and energy on myself is really important.

The future

How does the future look for me? I don’t know. I have to hope that it will be surgery and complication free. The thought of going through all this again and ending back in the same place is just too much to bear. I don’t think I could cope with more surgery and to be honest I don’t think they would consider another hernia repair as I have had so many now and my abdomen is such a mess.

But I cannot think about the worst as it would make me spiral. I need to think positively and plan for success. My goal is that by next year I will be strong enough to learn how to kayak. I want to spend the summer camping with Timm in our campervan, hiking, wild swimming and kayaking. It is a dream right now, but I am going to put all my effort into building as much core strength and muscle as I can. And all I can do is to try my best.

Peace and love

Sam x