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Dreading the Covid test – when past trauma effects current needs

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

The Unknown

They found this thing.  They called it a shadow and then slipped the word ‘mass’ into the conversation later.  I wasn’t expecting it, I had nervously laughed and chatted through the first part of the test and then the woman, the doctor, testing person, her, she went quiet.  She asked me to hold still and stopped talking about her daughter’s shop that she thought Id love.  She stopped making that casual conversation that makes the fact she is looking up my arse slightly less embarrassing.

There is this ‘thing’ in my rectal tissue.  I don’t know what it is.  She mentioned it could be an abscess but said I needed to talk to my consultant.  The mood changed really rapidly and I was so surprised that I just gathered my things and left.  I didn’t ask any questions or query what she was saying.  I didn’t do any of the sensible things, I just felt really hot and the word ‘cancer’ was all over me.  I could hear it whispering in my ear, feel it nudging me like I was walking through a bustling crowd of it.

She didn’t say cancer.  She never said the word.  I keep thinking Im imagining the whole thing.  She said she couldn’t say anything more and the consultant would look over the results as soon as possible and come back to me.

The logical part of my head is saying in a matronly manner ‘This, Samantha, is you over thinking it all.  It will most likely be an abscess or something easily treatable.  No one has suggested cancer.  Wind your neck in and stop being dramatic.”

I left the hospital and drove aimlessly, I ended up in a carpark at a shopping centre, driving round to find a parking space, only once I found one I realised I didn’t need to go shopping.  I drove to the old house where Timm was working and he chatted away.  He stopped and looked at me and said “Everything OK?” “Yeah!” I replied.

Then “No bubs, they found something”

His face fell.  I explained and he held me tight.  Said it would all be fine and we needed to not get ahead of ourselves.  I could feel his fear in his pounding chest, it was banging against mine giving away his anxiety whilst his face and words were soothing and calm.

I did a bad thing.  I took a photo of the screen when she left the room for me to get changed.  She had even asked me not to when I had asked if I could – “The consultant needs to see this first” she gently explained.  Then I did a lot of bad things.  I googled and googled and googled.  I dismissed the need for years of medical training and diagnosed myself online.

I know this is bad. It is ridiculous and if I were hearing this from another person I would tell them to STOP FUCKING GOOGLING.

You know the funny thing is, that the ultrasound of a rectum is surprisingly beautiful.  It looks like a lunar eclipse surrounded by galaxies.  It looks like a black and white Van Gogh sun.  It looks a lot nicer than you would imagine…

Today I am losing my mind thinking about what it could be, and so I called my consultants secretary only to be told that he is away till Monday and that the results would take a day or two to get to him anyway.  She put me through to the clinic where Id had the test but they said the woman is also away till Monday.  I imagine them both together, sunning themselves on a Caribbean island drinking cocktails with their heads thrown back laughing.

And so it is a waiting game for this unknown.  I am telling myself over and over again that it all will be fine, that the chances are that it is an abscess or something that can be dealt with easily.  Im pushing the word cancer out of the front of my mind, cramming it into a dusty trunk hiding at the back of my skull that contains the clowns and frogs.

I am on the verge of tears.  Im so frightened.  I keep thinking ‘Are you fucking kidding me? Have I not dealt with enough?’ It is so easy to wind yourself into a state of panic, but the words I use to comfort me are becoming a mantra, when I feel the panic rising and beginning to swallow me I repeat “It will be fine” over and over again.

Perhaps it really is nothing, perhaps they will look at it and shrug, something totally treatable and all A-OK.  I feel that these bad thoughts of something sinister is just fanning the flames of drama, I need to stop that right now and not let my brain go into over drive.  Because at this minute, everything is ok, no one is suggesting the things that are flooding through my brain, only me.

And so I will wait till Monday and speak to my consultant then.  Until then I just have to try and keep that trunk locked up tight and not let my imagination run wild.

 

Sam xx

UPDATE – my lovely consultant dropped me an email to say that it’s “Highly unlikely to be anything but need to see scans” and to try not to worry. I’ll update again when I hear more news xxxx

Surgery news

I have had a couple of pre op dates through and we are definitely working towards my pouch surgery being in April.  On 26th March I have to go in for a test of the muscles in my arse (nice!) and I have my pre op date for 9th April (Happy birthday Timm!)

The first test is called Anorectal Manotmetry, it is a test used to assess how well the muscles and nerves in and around your rectum are working, so that doctors know they are strong enough to deal with the pouch surgery.  I will also have an ultrasound.

j pouch surgery

Image from Colorectal Surgeons Sydney

The following information is from the NHS website.

“The test uses a device that looks like a small thermometer with a balloon attached to the end. This is inserted into your rectum and the balloon is inflated. It may feel unusual, but it is not uncomfortable or painful.

A machine is attached to the device, which measures pressure readings taken from the balloon.

During the test you will be asked to squeeze, relax and push your rectum muscles at certain times. You may also be asked to push the balloon out of your rectum in the same way that you push out a stool. The information is sent to the pressure-measuring machine, and gives an idea of how well your muscles are working.

The balloon can also be inflated to different sizes to determine when your rectum feels full. If the balloon is inflated to a relatively large size but you do not feel any sensation of fullness, it may mean there are problems with the nerves in your rectum.”

I am not looking forward to this test as you can imagine, but after ten years of Ulcerative Colitis I have had so many tests and doctors looking in my butt that little embarrasses me any more!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

The next appointment is for my pre operative assessment where they go through consent and make sure Im informed, do blood tests and any other tests that need doing.  Ill be screened for MRSA and they will just go through the information I need to know about when to go nil by mouth, when and where to come in to hospital etc.  I am not sure what the time between pre op and surgery actually is, I had a google and some people say its days before and others say it could be a month or more.  But my surgeon has said my op will be in April so we’ll just have to see.

And so that is where I am up to, everything is being booked and we are steaming ahead.  Ill most probably have a pouch in the next month and to be honest I am terrified.  But that is for another post as I can’t get those words out right now.

Sam xx