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If you have never heard of necrotizing fasciitis, aka flesh eating bacteria, then please do go and read this post - it may help save your life or someone else’s one day… NECK-re-tie-zing FASH-e-i-tis... Say what?!
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Gradually the world was slowly shifting into focus. It felt like turning the lens of a camera to sharpen the picture. The world became a little clearer. A little less fuzzy around the edges. A little more real.
I was awake. In my medical journal a doctor that visited me described me as having a GCS (Glasgow Coma Score) of 15! Really? The score estimates coma severity based on eye, verbal, and motor criteria. Fifteen is the highest score, which suggests everything is working properly. But how could that be right when my hands still weren’t working properly?
My BP was looking good (125/85) and my kidneys were almost normal.
But the 24/7 monitoring of my heart showed it wasn’t so happy. It was shuddering like a jelly: 60 to 70 times during the day and 50 times at night. Something called atrial fibrillation that I’ve mentioned before. It sped up and slowed down – dropping to 45 bpm repeatedly. It took little pauses – no longer than three seconds. But still three seconds sounds like a long time for it to be putting its proverbial feet up and taking a break!
The heart monitoring wasn’t checked by the nurses on my ward. It was done by a central team that were receiving the data from all the wires stuck onto various locations on my body and the machine with the screen beside my bed. They were watching 24 hours a day. Constantly looking and assessing what my heart was doing.
Now and again a wire came loose from the pads stuck to my skin. The monitoring team called the nurses and one of them would come darting into my room to correct it.
They watched these little pauses that my heart was taking. Every now and again they got concerned and had the nurses come check on me. I was confused by them popping into my room every five minutes asking if I was OK. I felt nothing. I was totally unaware that my heart was still having a hard time while the rest of me seemed to be doing better.
My hands were showing some signs of life and were no longer just flopping around on the end of my arms. I attempted to pick up a glass of water from the table beside my bed, but my fingers still wouldn’t obey simple instructions from my brain.
As I reached for the water a finger twitched and flicked the plastic cup further away from me instead of towards me. I tried over and over again. Every time my fingers twitched doing the opposite of what my brain was asking them to do.
Eventually the cup was right on the edge of the table. And then a final twitch sent it off the side and spinning to the floor. It’s a good thing it was plastic.
I was totally exhausted by the whole thing. Frustrated and upset. Miserable at being reliant on others to even get a sip of water.
Yet still I didn’t ask for help. I didn’t say a word to the nurses that I had a problem. Though it must have been obvious from the number of times I had to ask them to pick up my cup and let me drink from that soggy paper straw that stuck out of it.
When they weren’t in the room I kept trying. Convinced that if I could somehow train my hands to start listening to my brain again.
Every few hours new bags of antibiotics were attached to the line in my neck and dripped into my bloodstream. I must have received liters of penicillin by this point.
There were also pills to take – I had no idea what they were for. The nurse would hand me a little pot of pills or put them on the table that was now over the bed in front of me. I couldn’t pick up the pot. I couldn’t hold it securely, let alone take the tightly fitting lid off it.
I asked for help to remove the lid. Then I’d try to lift the little pot to my mouth. I got the pot a few centimeters and then I’d lose control. Tipping the pills into the bed. And the nurse would be huffing and puffing trying to find the pills in the rumpled sheets, still unaware or uninterested in the fact that my hands didn’t work properly.
I couldn’t use the TV remote. I couldn’t pick up my phone or even hope to be able to use it. I couldn’t hold my iPad to read, even if I could have concentrated. All I could do was lie there.
The nurses started to get frustrated with Kim calling them on their phone for updates or asking to talk to me. They pushed him to call me on my own mobile. I remember a nurse coming into my room. I hesitate to say stomp in, but she was close to that. Her irritation was obvious. She pulled my phone out of the cupboard and told me Kim wanted to talk to me so he would be calling.
No sooner did she say that than the phone rang. I looked at it and tried to will my limp hand to extend a finger, to touch that little orb on the screen, and slide it up to pick up the call. I tried. I failed. Tried again. I just couldn’t get a finger on the circle. My finger twitched and hit anywhere else on the screen, but not that little button. The call went to voicemail.
Kim rang again.
I had to ask her to pick up the call for me and then wedge the phone between my chin and shoulder so I could talk to him. Still, she didn’t seem to understand how little my hands were working.
Authors Note. Reading this section again it makes me want to scream. How could none of the medical staff, especially the nurses, not notice that I had an issue? How could I just be left to try and fend for myself? It was a relief every time Kim and Mum walked through the door as it was so much easier to ask for their help and they appreciated what was going on with my hands. And yet even they didn’t raise it with the nurses. It makes me want to cry that a patient’s condition can be ignored by the medical staff in that way.
A revolving door of doctors came and went. Barking their names and departments. I couldn’t think. I couldn’t remember. Every visit moved much too fast for me to follow very much. Confusion mostly reigned in my weird world.
Kim appeared with Mum. I’d already started listening for his footsteps coming down the corridor outside my room. I knew each time when he was going to walk in the door as I recognized the squeak of his trainers and the distinctive sound of the way he walked. Each time I breathed a sigh of relief.
As always he was desperate to test my hands and to see if I could hold his hand. This time I could put my hand in his, but I had no grip. At least it could rest there.
I told nobody about the horrific hallucinations every time I closed my eyes and sometimes when they were wide open. I asked myself if I was going mad? Was there something else wrong with me? I told no one. Not even Kim. I didn’t even consider telling anyone. I was gripped by such an intense fear that if I told anyone they’d never let me out of this place.
I couldn’t sleep… the theme continued in that I told no one.
The nights were the worst. They seemed to last forever. And ever. And ever. The hours stretching into days at a time. The clock on the wall of my room ticking past each minute. The hands moving around the clock face so sluggishly.
As I lay there I listed to the helicopters landing on the roof. It’s a major trauma hospital. Helicopters arrived every few minutes, even during the night, from all over Denmark. Every time I heard the rotor blades I imagined the patient on board. Wondering if it was another person with an infection like mine that they were rushing to the hospital.
In my mind the person was always in a worse state than me. It had to be bad if they were in the helicopter. Probably that would have been me if I hadn’t lived in the Copenhagen suburbs.
My heart went out to them. Imagining where they’d come from, what had happened to them, and how they were feeling. Or if they were even conscious.
Hospitals are not quiet places at any time of day or night.
I wished the hours away. Waiting for the 6am visit from the nurse who toured the ward taking the morning blood samples and hanging yet more bags of antibiotics to flow into my body. Waiting for a familiar nurse to arrive for her shift at 7am just to see someone I ‘knew’ or had at least met before. Waiting to hear Kim’s footsteps coming down the corridor. Waiting. Waiting. Waiting.
I knew I needed to sleep to recover. I couldn’t. Sleep didn’t just elude me – it simply wasn’t an option.
At midnight New Year fireworks exploded around the hospital and all over Copenhagen. It’s a scene like no other every year, the sky lit up with hundreds of thousands of rockets their colorful explosions. The noise is deafening. It hardly registered in my solitary little world.
Every New Year the sky lights up all over Denmark with millions of fireworks. It’s an amazing spectacle of light in the middle of winter when everything is so dark and daylight so limited. A huge celebration of the fresh start that a new year offers.
I didn’t care this year. All I desired in the world was deep, calming, healing sleep. But the terrifying hallucinations continued to haunt me every time I closed my eyes…
ALONE-NESS
It wasn’t just loneliness that I felt lying in that bed. It was sadness. A sense of loss. I was totally alone. Even when people were around me. It was still just me lying in that bed.
There’s a loneliness to being sick. Or maybe I should say an alone-ness? It’s only happening to you. You’re the one lying there, whether it’s in a single room or whether it’s in a room with multiple people.
Of course your illness impacts your friends and family - those you love. But still it’s just you lying in that bed. Unable to move or do anything for yourself.
I was lying in a single room. A luxury these days. I appreciated the peace of not having a roommate. Yet I was in a bubble of alone-ness totally separated from even the other patients.
I lay there and watched the clock.
I didn’t cry.
I didn’t ask for anything.
I just waited.
And waited some more.
Alone.
If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.
If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.
Thank you!
If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read any previous chapters that you might have missed.
Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter. I’m so excited to finally share it with all of you.
Next week I’ll be posting Chapter 8. New Year’s Day 01.Jan.2023 - a new year dawns and with it comes a very special doctor.
Dear Jacqui
Sending another huge hug for both of you. I have no words for the horribel truth you have been through.
Again so well written so terrifying so painfull. I am lost for words and will be looking forward to the next chapter.
So happy you are still with u’s
Such an ordeal. And the hallucinations sound terrifying.