Grief Journal

Despair

We should be allowed one more moment with them, once a loved one has died I mean. We should be able to just pull back the blind and see them one last time before they go forever, just so we know they are okay now.

What would I give for that one last moment? I would give my life for that. I can’t help thinking there is nothing left to do here now. I’ve lost my boy and in doing so I am lost myself. I try to lift my head up and look out for those people who need me to see them, to show them I am going to get through these dreadful days of blackness, but I can’t help wondering, what’s the point?

I am sick at the moment, perhaps that isn’t helping. I can’t physically do much and so my mind has time to torture me with images no mother should ever have to witness. I feel helpless.

I went for counselling, I couldn’t listen to the counsellor who kept trying to explain my thought processes to me. For goodness sake, I know my own thought processes, they are all lined thickly with pain. I understand why these thoughts are torturing me, fragments spinning in and out of my conscious thoughts, I can’t put them all together cohesively, that would signal the end for me. Fragments it is. My brain can’t hold onto them for too long, I can let them spin off. But they dig in deep as they pass by and they draw more emotional blood on their way to wherever they have gone to hide. I know they will be back though, because that is the only reality there is right now. The pain will come back over and over again and I will drop and scream in despair because I don’t understand why it was my son that had to go.

I just don’t understand how I got here from there and why it all went the way it did and how it happened so quickly, too quickly for me to catch my breath and catch him before he shattered. We always had before. I don’t understand why this time it had to be the end.

It shouldn’t be the end. I want to draw the blind back one last time just to see him before he disappears from view forever. I just want to see that he really is okay now.

Grief Journal.

ANGER

As I sit writing this I realise I am forever intrinsically broken by the very recent passing of my son. I view the world in a very different, more abject way than before. I don’t care very much at all about anything. I know that a huge part of these feelings are grief driven and some of it will pass eventually. Most of this post won’t make very much sense and probably won’t be cohesive or relevent. That doesn’t matter, what matters is that I say words to my journal as I feel the emotions that drive them.

My days are currently taken up with sorting out the services that were connected to my son’s life. The idiocy of bureaucratic officials who must tick every box on the page before they deem that contract ended. My answer to all of them currently is simple, death is final and cancels all contracts completely and without question. I then ask them to put themselves in my shoes and ask themselves how much they would be prepared to put up with if it was their child’s life they were closing down.

Yes they have been ‘sympathetic’, they have chuntered out the correct words for the grief stricken individual they are dealing with. No it does not help one iota that they had the correct words to say in that first instance because then they ask all the stupid questions on their list and I am left wanting to scream at them. It’s not as if there is even any money to be settled either way. I don’t deal well with unnecessary bureaucracy under normal circumstances. Dealing with it right now has left me raw and angry and out of sorts with the world because I don’t care if they never get all their boxes ticked. I don’t give a damn that their computer won’t accept the data because there may be a missing piece of information. I don’t give a fuck if it takes them the rest of their working lives to sort out whatever problems they have with my closing down of accounts that are no longer required.

Why is it so difficult? Well, apparently it’s because my son was not listed as having cancer on their records and that is why he died. He was also very young, just 32. He is listed as having physical disabilities, epilepsy and a host of ‘other’ conditions, but cancer wasn’t one of them. The computer didn’t like the information. It didn’t marry up with their previous records and kept throwing up a glitch and bouncing the hapless idiot back to the previous question. Please confirm cause of death.

I hung up on her. Now, to put this into some perspective, this whole conversation was so that I could have some emergency call equipment collected by them as it is no longer required. Why did they even need to know cause of death? Well, because it was a question on their list and the answer provided was inconsistent with their previously logged information regarding Dan. She even went so far as to say perhaps I should have called them to update them on his condition? Well fucking hell, excuse me for not thinking of updating their system when we had just been told my boy was going to die very soon.
You see, in reality, this was just one of those stupid unthinking moments when a person hasn’t connected their brain to their mouth before speaking. It was a human glitch, and we are all capable of them. Some more than others, but no one is perfect. Perhaps extra training could have prevented it. Perhaps, whoever designed the questions should have taken an aptitude test before being given the job of designing such intrusive questions when a person dies all in order to close down a service that is no longer required.
What this did to me was simple. It triggered three days of harrowing memories of the final days of my son’s death. In the fullness of time I will come to realise I was fortunate enough to have been able to spend almost every single day of my son’s life with him from the moment he was born to the very last breath that he took.

Right now, it kills me that I witnessed my son dying and I could do absolutely nothing to prevent it. All I could do was be there for him right to the very last breath so he knew he was not alone and there was nothing to be afraid of.
But now, I am afraid, I am alone and I am bereft. I have never been so completely lost.

Cancer stole my son and robbed us both of the rest of his life.

I am bitter and angry with the world right now, I have a huge hole ripped in the core of me and I can’t balance on the edges most days and I fall in. The anger at these people actually helps in some odd way because it clears the brain fog, even if it is only temporary. Anger is fast becoming my best friend. It’s the only way I can still feel real.

I miss my boy, I miss his laughter, I miss his sarcasm, his quick quips but more than anything I miss his quiet gentle presence in my life every single minute of every single day and nothing will ever make a damn difference to the size of the hole he left behind.

I know this is grief, I understand the pain I feel is ‘normal’ in these circumstances but there is no normal anymore. Everything is fucked. I don’t care. I just want to hear him speak one more time and I want the world to leave me alone now.

That’s My Boy

I could talk about Dan from several places in his life and all of them would be filled with passion and a single minded determination to succeed. His passion for his beloved sport, Wheelchair Basketball. The pinnacle of his time in the game as a Welsh International player. His happiest time in the game when he played for the Northwest Juniors, and then later when he played for Vikings. He was a team player and proud. If you had been able to ask him today what his proudest moment in the game was, he would tell you, it was winning his first gold medal with the Under 15’s Northwest Junior squad. He told me that day, he still hadn’t reached his limit, the sky was his limit, and he was going for it. He pushed that envelope as far as Welsh International Squad and he was so damn proud to push out in his country’s colours.

When he was a small child, he pushed boundaries, changed perceptions, pushed to do things he wasn’t supposed to be able to do, he learned how to tap dance, sitting down of course, but he learnt anyway. He was fascinated with Michael Flatley and how fast he could dance! He ‘danced’ on stage, sitting down, with his dancing school friends and he loved every second of it. In his head he was flying across that stage with feet of flames! He was giving Michael Flatley a good run for his money!  From that summer show, came a little acting part to play Tiny Tim in the Christmas carol. He upset the fluffy cloud brigade on the front row, who noted a continuity issue with his costume and were quick to point it out. I was politely informed that Tiny Tim only had one crutch and one leg brace and the little boy on the stage was over hamming his part by using two crutches and two leg braces.
I told the woman she had made my day simply because she had looked past the disability and only seen the child. Once she realised her mistake and that Dan was in fact disabled, she was mortified.

From that came the nomination for the Millennium Children of Courage Award, the dunking of his biscuit in the then Prime Minister, Tony Blair’s cup of tea. How he reduced Vinnie Jones to tears, frightened the living day lights out of the Duchess of Kent, upset Joan Collins because he thought she was old and didn’t mind sharing that fact, how he had a deep and meaningful conversation with Chris Eubank about the difference and similarities between Chess and Boxing. How he changed perceptions of the celebrities around him of what it was to be human, regardless of ability or lack thereof. All of this before he was 11.

All those events shaped my son, all those times filled his life up and as each chapter ended, he would start a new one with equal enthusiasm and drive.

His life was littered with ill health, long spells of recovery, even longer spells of hospital stays but through it all it was just something he needed to get over, a challenge for him to overcome.

I could talk for days about individual moments, funny, hilarious moments during his years at basketball, his years as a small child, his sack race win at the age of 5. (We tied the sack around his waist, and he ran with his crutches till he won). I could talk for days about my boy.

All those high times came to an end when his body began to fail him, first with epilepsy, then with kidney issues, then other aspects of his health took a turn and, in the end, the only thing that would save him was a urostomy.

That signalled the end of his time in basketball, he hung up his wheels and said 15 years playing the sport you love is fantastic but now it was hurting him. He retired. His urostomy took place, and not a moment too soon, his body was packing up inside and he was in dire straits with his kidneys.

That operation turned his life around because that was the day I told him, all he had to do was wake up after the surgery and he could have his black Labrador. That gave him something to focus on, his biggest wish for years since Mr Stinky had died was to have a black lab, train it to be his service dog and just spend all his time with said pooch. He trained Ben himself; he took him to Dog training lessons and when they couldn’t take him any further, he learnt the rest of it and trained Ben himself. He became so knowledgeable about dogs; he was like an encyclopaedia of every dog breed!

That is the man I want to talk about, the quiet, funny, sarcastic but very contented man who went for a two mile push every day with his dog down at Talacre. So many people knew him and Ben, he touched so many lives, he made so many people smile. Ben lit up all the dark corners of Dan’s life and completed him. He was utterly devoted to his best friend and side kick. Ben never let him down once, and he never did Ben wrong, not once. It was a love fest.

His proudest moment in recent years was when he got his chest tattoo of his beloved pooch Ben. He loved his tattoos, he loved classic cars, American baseball, (although when I told him it was just British rounders bigged up, he was less than impressed with me), he loved snooker and tennis and he loved Strictly, just so he could argue with me over who was the best dancer. It was a bad day at black rock for him when Bill Bailey won! He learned new skills all the time, he learned how to tie rope knots, intricate rope knots, he learned about sword making, he loved cooking and as well as all that he had an abiding respect for anyone who served in the forces for their country. He was patriotic to the core.

Ben brought about a peacefulness and contentedness in Dan I had never seen before, and it was wonderful. Dan became a very proficient photographer of wildlife and nature, and his new goal was to make a book of all his photographs. He never got that opportunity, but I will fulfil his final wish and complete that last journey on his behalf.

My boy made me proud; he frustrated the hell out of me sometimes, but most of the time he was so funny and kind and so genuinely honest and open that I often sat and wondered how I managed to make such a lovely, perfectly imperfect person.

We were a team me and my boy, we stuck together and fought our way through all the rough times, and we did happy dances during the good times. We travelled, we laughed, we swore (me more than him, but I taught him some new words every day which he happily made use of) we rarely cried, we always challenged ourselves to go as far and as high as we could, and we supported each other in our individual endeavours. He was my biggest champion and supporter, and he would tell everyone about his crazy mum.

I asked him once, if he could change anything about himself at all, what would it be? His answer was simple. He said he would change his disability and he would choose to be a double leg amputee because his own legs were useless anyway and he had never really had anything to do with them. I asked him why he had chosen to be an amputee, he said, because my insides would be working, and it would just be my legs that weren’t.  I asked him why he hadn’t chosen to be able bodied, and he replied, because I’m not, I wouldn’t know how to be that person, I wouldn’t have had the life I’ve had, done the things I’ve done, I would have just been a normal joe and done normal stuff and I wouldn’t have been different. I like being different.

He was different, he was kind, and supportive, sarcastic, and sharp witted, gentle, and caring and he never hurt a single person his whole life. He had a life well lived in his short 32 years, but above all that he was Dan, no apologies, no regrets. He was my beautiful son of whom I am most proud. The boy with the smile in his eyes.

That’s my boy.

Final Update

On the 29th March at 10.29am 1990 I gave birth to the most beautiful perfectly imperfect baby boy and I rejoiced. Yesterday at 11.45am 10th December 2022, my beautiful son passed away. His final battle with illness and then secondary cancer was just too much for his tired body. He was 32 years of age.I brought my son in to this world and witnessed his first sweet breath, and I have spent every single day of his 32 years with him. Yesterday he made one last herculean effort to look straight into my eyes as he took his final breath. We were listening to his favourite Pink Floyd song and I know he could hear it. His breathing eased and he became calm. I carried my son for the full circle of his life and am profoundly grateful for that realisation and opportunity to share something so precious with him.

I am truly lost, my heart is shattered into a million pieces for the beautiful son I had to let go of. I weep sadly for the life he will never get to live. I rejoice at the 32 years of a life so well lived, so packed full of challenges and successes, massive highs, terrible lows, enormous humour in the face of adversity, and I take solace in knowing that there will never ever be another person on the planet like him.

He has touched so many hearts and minds in his short life, he has changed perceptions about disability boundaries, he has educated and he has reached down and held hands to raise others who needed his assistance to get where he had climbed.

I am the most proud, most heartbroken warrior mama in the world but I know my baby is no longer suffering and for that I am profoundly grateful.

My boy and his best friend in happier healthier times.

Rest easy son, the fight is over you won your freedom to fly as high as the sky.

Currently Dealing with … Update #5

We found out yesterday afternoon that my son has secondary liver cancer.
The Doctors believe it started either in the bowel or bladder and has travelled to his liver. They have informed us that they cannot ‘cure’ secondary cancers, but they can control it with medication.
We have no definitive diagnosis or prognosis at this point as many tests still need to be run in order to find the right treatment to target his cancer.

They are hoping for more answers by next Friday.

He is strong and resilient and we will fight this with everything we have in us. He is my life and my colour and anything other than recovery is out of the question and unacceptable.

That’s all I have right now.

Stay well and be kind to yourselves.

Currently dealing with… Update 4

Hey people,

I hope life is treating you better than you hoped for and never worse than you could have imagined.

I can’t say that for my own life right now, my son is now on his 86th day in hospital.

They have found the real source of the infection, it is the liver, it is loaded with roughly 23 to 26 abscesses of all varying sizes, this has caused his lung to fill with fluid and so his breathing is laboured. He has a ‘tachi’ heart rate pretty much all the time, his BP is one day on the floor, the next day through the roof. His temperature ranges from 35.9 to 40.4 at any given time. In short he is in a world of trouble.

He has had his stomach drained of infection, he is currently having his lung drained of fluid, so far 3100ml has been drained off his lung so far, the drain is being left in over the weekend in case the lung starts filling up again. Thursday evening he had the MET team, (medical emergency team) called to him because his stats were all over the place and a crash team were on stand by.

He is stable again now, and it has been decided that he needs to be transferred to a different, better, hospital that specialises in hepatobiliary. They also specialise in nephrology and respiratory too. So they can cover all aspects of his conditions.

I have been informed that the reason his lung and liver is so badly compromised now is because the urology consultant and his team at our local hospital have delayed positive treatment of the lung and liver while they debated the need for a nephrostomy on a dead kidney even after being informed back at the beginning of September, by his own Urology Consultant from a different hospital, that it was not a viable option. This has taken them roughly the entire 86 days. They then decided it would be pointless. I am formally taking them on when my son is well again, and he will be well again. It will just take time and a lot of positive mental attitude from us both. He now has the right people surrounding him and they will help him. They have to.

I have nothing else left to say really, I just wanted to bring you up to speed so you know where he’s at.

Currently dealing with… Update 3

Hey Peoples,

I hope life is treating you kindly, I sincerely hope that your friends are treating you kindly too.

Weird thing to say right?

Well, under normal circumstances, (whatever they are), I would think it was weird but after a really dreadful visit from a long time friend on Thursday just gone I am beginning to wonder if I ever knew her at all.

I haven’t seen this particular friend more than 3 times since 2020 lockdown happened and I had my attempt at dying from sepsis thing at the beginning of the lockdown. She lives in the same village as me, although we are far enough apart we can go weeks without bumping into each other. We have been friends for 25 years. Or at least I thought we were…

Anyway, she turned up on Thursday morning and immediately she sat down, she rushed to tell me all about her life, how she is on a short waiting list to have her hips replaced, wondered why I hadn’t had the same treatment for my knees? Oh I see, just a little jibe there, just a tad too gloating for me, she is pointing out that she is worse off than me. Okay, who the fuck cares? Let’s face it if things come down to who is suffering more, I would rather be glad that it wasn’t me. I sure as hell wouldn’t want to rub my friend’s nose in the fact I was getting seen much more quickly than they are, meh, It is what it is. I honestly couldn’t give a flying fuck right now…

So after her 15 minute download of every single comma, full stop, exclamation mark of the entire conversation with her hip specialist she finally got around to asking how my son was. As you know he is still in hospital and actually on Thursday last week he had taken a downward turn and was not doing well at all. Unfortunately for him, he has no sensation, so his body is doing one thing, as in behaving really fucking badly right now and his brain is doing something entirely different and telling him he is absolutely fine and he should be at home getting on with his life and picking things back up again.

I said this to her, I said, he just wants to come home now, he’s had enough of being in hospital just sitting in a hospital bed playing mindless games on his iPad and avoiding talking to cranky old geezers in the beds facing him.

Her response floored me, and I quote, ‘He needs to get over himself, he’s not doing anything different to what he does at home, so what difference does it make where he is?’

Wow! I never realised how little she understood or knew about my son, whom she has known for 25 years. How she has the nerve to sit in judgement of his lifestyle is beyond me, she has never worked a day in the last 25 years nor has her husband. They have sat at home and played computer games and been armchair twitter trolls who mud sling at anyone who is different to them, as in anyone who happens to be religious. That should have told me I suppose, but I have a disconnect regarding their online activity as I don’t follow either of them, I just get told when she thinks she has said something cutting and oh so clever.

How did she miss the fact that he is out of the house daily, going on a two mile push in his wheelchair so he can give his dog a good run every day? How did she miss the thousands of photographs he has taken and has shown her when she used to call round prior to 2020? How did she miss the conversations he’s had where he’s said he wants to create a book of his photographs showing life in pictures from the vantage point of a wheelchair user.
How has she forgotten that he played wheelchair basketball for 15 years culminating in a victorious International career playing for his country? She was sat facing his huge cabinet of sporting trophies and accolades ffs. How is it possible that she could think he sits around all day doing fuck all with his life so it doesn’t matter where he does it? Either at home or in hospital attached to drips and machines?

I am now sitting facing this woman wondering who the fuck I have called friend for a quarter of a century. Her dismissive and derisive attitude towards my son has been flying very low beneath the radar. I never picked up on it before. I am absolutely furious, how dare she sit in judgement of my son? Jesus, he’s currently in hospital fighting for his life, his infections were raging on Thursday, they are stable again now (Tuesday) but it has been a hell of a long 6 days from where he was to where he is right now, and there is no guarantee he will stay stable at this point.

I asked her to leave. She doesn’t understand why I am upset with her and told me I wasn’t thinking clearly because I was worrying about him. She said she would come back in a few days to discuss things calmly with me.

Good luck with that… I am currently not taking prisoners, I am only leaving dead bodies in my wake.

Currently dealing with… Part 2

Hey Peoples, me again.

I’m tired, cranky and in need of some kind of magical intervention in my life right now. If it can go wrong, it is doing and with alarming regularity.

I have a question, why after six weeks of my son being in hospital does anyone think it might be, that I still have to explain to the nursing staff on his ward, the reason WHY a pressure sore on my son’s right buttock needs the specialist HEALING CREAM and a DRESSING?? And also, WHY it is dangerous to leave it both uncovered and untended.

So, he has been in hospital 6 weeks now, going into his 7th and every single day has been one problem after another, generally created by either a lack of understanding of his core disability (Spina Bifida) or a lack of understanding of how to dress pressure sores correctly, and how to change a stoma bag.
Now, Okay, I know the stoma bag and pressure sore thing is something that a district nurse would be better placed to deal with, but that’s not on the cards as he is in hospital with hospital nurses looking after him. I am fairly sure that they all went to the same nursing colleges though. Maybe I’m wrong.

I would expect them to have at least a rudimentary understanding of how it all works and WHY it needs to be done on a regular 24 hour basis. I thought that would be nursing 101.

Anyway, that aside, (but only slightly as it still features) he has now gotten over Covid and has the all clear since Tuesday the 13th. So imagine my absolute horror and frustration when I received a phone call from the ward staff nurse on Wednesday the 14th telling me that he has tested positive for MRSA a hospital superbug. I am beside myself, because my understanding of this particular hospital bug is that if the ward is kept properly cleaned at all times, the bug can’t thrive, let alone infect already sick patients.

They tempered their news with this, ‘please don’t be too worried, there is a very effective dual treatment that works to kill this bug and it is no longer considered to be the killer bug that it was originally.’ OH well, that’s alright then!!! Isn’t it??? NO!!! It bloody isn’t!

He is currently sitting on an open wound, the MRSA is around the groin area, it is not a great journey for the MRSA to travel to the open wound on his backside and infect it. We are then dealing with a whole different level of infection. Please also remember, he is currently in hospital because he has a massive septic infection in his hips, liver, right kidney and stomach, apparently caused by his right kidney leaching infection into his system slowly over time. It has flown under the radar of detection via the usual routes of blood tests and urine samples. It only showed up on an MRI scan and everyone was duly shocked. They are still trying to identify the infection so that they can match the antibiotics to it to clear it up properly. we are 6 weeks in.

Now he has another infection, this time picked up in hospital. The thing I don’t understand, is MRSA is apparently a one to one contact bug, it’s passed through human contact. He has not been out of bed in 6 weeks, only nursing staff have touched him and the radiology staff. That tells me one of them has passed this bug onto him. How on earth are we supposed to have any kind of faith in these people to fix him if all they keep doing is give him more infections?

Okay, so back to the open wound, if the nurse did as she was supposed to and dressed that sore on his behind with the specialist healing cream and the correct wound dressing every 24 hours, then I would not be concerned about the MRSA travelling to that area as it would be sealed off. Currently he is sitting on an inco sheet which is rough on his skin and that is actually breaking down the pressure sore further so I am as mad as hell that I am still having to spell out the very crucial need to keep that sore tended and dressed properly.

Now, cast your mind back to that ‘please don’t worry’ statement. The treatment for the MRSA is a dual treatment. He contracted the bug on wednesday 14th September, and up until yesterday, Friday 16th he was only applying a cream to the inside of his nostrils 3 times a day. A full medicated body wash was supposed to be being applied once a day along with the application of the ointment to his nose. When do you suppose they did the first body wash?

Oh , that would be Friday afternoon after I had raised the roof because it had been sat on his cabinet for two days still in the pharmacy bag, unopened and ignored since it had arrived on Wednesday.

I despair. I truly do despair.

He finally has the stomach drain fitted to remove as much of the infection from his stomach as they can, only a week after it was supposed to have been done, and only because on the 13th I came away from a respite break and drove over to the hospital to find out what the hell was going on. He had the drain on the 15th. He should have had it on the 8th Sept.

It’s only a week, not much time to wait is it?

Except that on the 7th of September, the doctor who told me he needed the drain also informed me that it was urgently required because of a complication with the end of his VP Shunt tube in his stomach sitting in the pool of infection. If the infection got inside the tube it would travel up the tube and to his brain. No prizes for guessing the horrendous outcome if that happened.

So an extra week sitting in all that currently unnamed infection, are they sure that’s not a week too long now??

For those of you who don’t know, a VP Shunt is a piece of equipment that is fitted into a ventricle in the brain to drain off excess fluid in the brain when the ventricles either don’t work properly or at all due to hydrocephalus. Hydrocephalus is a condition closely associated with Spina Bifida that causes a buildup of excess fluid in the brain. Most children born with Spina Bifida would normally have hydrocephalus as well, the stats when my son was born was only 1 in every 100 born with SB would not have hydrocephalus.

A tube runs from the shunt in the ventricle down the side of the skull, along the neck and down over the collar bone and into the stomach where the excess fluid drains off into the system safely. The tube is roughly 4 or 5 feet long to allow for growth and is never interfered with unless the shunt develops a problem. My son has had his shunt since he was 9 months old. He’s only ever had one problem with the tube when it kinked because the hydrotherapy pool at physio was too hot for him and it made him ill for 3 weeks. He was 10 years old then. Unsurprisingly, that happened at the same hospital he is currently in. The ineptitude appears to span 20 years and counting.

My apologies for the medical lesson, I just need to dump all this stuff somewhere before I go stark raving mad and end up needed a white jacket with shiney buckles up the back and wrap a round sleeves, or a new heart.

Currently my palpitations are actually visible to the naked eye they are so severe and constant.

The nurse told me not to worry, she would do the medicated wash down every day from now on… she never agreed to dress the pressure sore….

Why do I need to worry?

Currently dealing with…

Hello lovely people of WordPress land, how the bloody hell are you all?

So, as the title of this blog suggests, I am currently dealing with some stuff that is bigger and scarier than anything I have ever dealt with before in my life, and that is not an exaggeration.

My son, as many of you will know, is severely disabled. He is usually a strong, kinda healthy individual that takes all things disability in his ‘stride’. He’s wheelchair bound so the term stride is used loosely. We haven’t invented a suitable alternative for people who cannot walk. The english language needs an update. I digress…

Currently, my amazingly resilient son is lying in a hospital bed attached to an IV antibiotic drip that is fighting off an infection so big it registered as 367 on the infection scale. Normal non infection levels would register at below 5. He’s very, very poorly. He has been in hospital since the 6th August, exactly one calendar month today. The Doctors have indicated that he will be in hospital on IV antibiotics for another month at least.

On the 4th August, our GP (whom I rate highly and have the deepest respect for) came out to our home to examine my son because he had a lump in his stomach that was causing him untold grief and pain. Briefly, my son does not normally experience pain from his torso down to his toes. He is numb internally and externally, which brings with it a lot of problems. The fact that he was in pain and could feel it was sending alarm bells off in both mine and our GP’s head and he came out to him.

He carried out a very thorough examination and tested all Obs, BP, Temp, checked eyes, mouth, ears, listened to his heart and lungs, did a spot check urine sample, and all of his stats came back well within normal parameters. He puzzled over the results, When he had tested for a UTI in the urine, there was absolutely no indicators to say that an infection was present. Bloods had been taken two days before and the results had come back clear of any infection. A kidney function test had been carried out just two weeks prior to August 4th and the results for that were 90% functionality, the best they have ever been in his entire life.

The GP confirmed that he was as concerned as both myself and my son were, but for lack of any evidence of infection, and lack of physical manifestation of illness, it was decided that perhaps constipation was causing the problem and a course of treatment was agreed upon. The GP had instructed that a short course of treatment for constipation should be carried out, but if it did not resolve the issue immediately, he would order a CT scan to see what else was going on. We never got that far.

Two days later my son was admitted into hospital after a 12 hour wait in A&E. (Accident & Emergency) In the two days from the 4th to the 6th, his infection rate went from Zero to off the charts registering at 367. A CT scan was carried out, it came back showing a ball of infection in his stomach, but more worryingly it also showed abscesses on his liver and his right kidney was enlarged to 48mm, while his left kidney was at 32mm. His right kidney was so full of infection it is non-functioning. Because of the massive level of infection and the areas it was covering, an MRI scan was ordered for better clarity of image. This turned up septic arthritis in both of his hips. My son is literally chock full of infection and it didn’t show up in any blood tests or urine samples. No one is to blame, it just is what it is and has managed to fly beneath the usual radar levels.

Currently after four weeks of constant IV super antibiotics, his infection rates have come down from 367 to 72 a drop of 295. The problem now is that the remaining 72 is proving to be resistant to the antibiotics so other options are being discussed. Currently, the option of choice is to put drains into his liver and kidney and the sack of infection in his stomach and drain them off. They have yet to decide on a course of action for the septic arthritis in his hips.

The problem with this is, he already has a stoma site on his right side, but the radiologist is unsure how to proceed using that as the exit point for the drains. He wants to create a new exit point to have the drain come out of, the problem with this is, it would be around the back edge of the right flank of his side. This would be semi-permanent until a decision is reached about the future of the right kidney. If they put the exit hole there my son is not going to be able to sit in his wheelchair without applying pressure to the drain. It opens up further risk of infection and when the drain would be eventually removed, it would leave a hole. My son does not heal quickly, if at all. He has pressure sores all over his backside because he doesn’t heal. They have been around for two and a half years now. They have barely made any progress because he has to sit on his behind constantly. He’s disabled. He has to put pressure on the area, he has no choice.

He is in a mess, and there is only one small light at the end of the tunnel right now, that is, his surgeon and urologist that performed the urostomy surgery on him 7 years ago and consequently saved his life, is now being contacted to come and give his expert opinion on the best way forward, and hopefully to perform any surgical procedure that may be required.

He is deeply trusted by my son and myself as a man who can do the job, who has the presence to calm my son when no one else can, and he is acutely aware of the complexities of my son’s health.

It took me 4 weeks to get anyone to listen to me about contacting him and a shouting match between me and the radiologist before he threw his hands up and agreed that it was the best way forward. I am mentally, physically and emotionally spent and broken. My son is my life, I cannot bear the thought I could lose him, but that thought has been ever present in my mind for the past 4 weeks. Yesterday I was told he has contracted Covid which has run rife on his ward. The ward has been on lockdown for the past week trying to contain the outbreak. He is coping with it, it doesn’t seem to be affecting him adversely at the moment for which we are most grateful. Neither of us is sure how much more we can cope with and we are trying to hold each other up with sarcastic humour and hysterically funny moments from the past stays in hospitals over the years. So far, we haven’t had one of those moments this time and that scares me a lot. The worst part about all of this is that normally when you are ill and you end up in hospital, you breath a small sigh of relief and think, I’m safe now, they will fix me. With my son, that isn’t the case. I have had to literally train up health care workers on how to change a stoma bag, how to dress pressure sores, what to use and which dressings to apply in which area for maximum skin protection. I have had to order the hospital Urologist consultant out of the room because he couldn’t deal with the complexities of my son’s case 7 years ago and almost killed him with his inaction, he was not getting a second chance to try again now. If he was too complex a case 7 years ago, then it could be taken to the bank that he is most definitely more complex now than he has ever been. Still, no one contacted my Son’s proper Urologist Consultant for his opinion until today.

A health care worker instructed my son to get out of bed and sit in the chair, you’ll feel much better Mr S if you do that. He and I are still wondering if he has learned the art of levitation yet. She has been ‘informed’ of her crass error. She no longer deals with him, neither does the Jnr. Ward Doctor, who after two weeks of IV antibiotics declared him ‘clinically well’ and said he could go home with tablet form antibiotics, and attend outpatients when his course ended. She needed the bed for a sick patient so my son could go home. After asking her if she was authorised to override the consultant Orthopaedic surgeon’s decision to keep my son in hospital for a minimum of 6 weeks on IV AB’s, she said she was just trying to reduce the risk of my son catching a hospital infection through long stay. Not as she had previously stated, she just needed the bed for a sick patient. Move over son.

She no longer works on his ward, for this I am truly grateful. I have spilled many words into the ears of the people who are supposedly looking after my son, they are now looking after him properly and following a tried and tested protocol that works. Mine. It isn’t rocket science, but it does require a degree of common sense, which unfortunately is thin on the ground.
Everyone has been telling me we need a care package putting in place at home to allow me to step back and have a ‘well earned’ rest as they put it. Retire they said, you’ve earned it, they said. The reality? They can’t find enough people to do all the things I normally do with my son on a daily basis. The logistics of it all have flummoxed them. I am not holding my breath for the care package, it is a pipe dream that will probably come to nothing. They have to be seen to be making the right noises, but that’s all it is, white noise in the background.

If you got to the end of this post, thank you. I appreciate you reading it. I just needed somewhere to put it all down safely.

Sleep Paralysis

It isn’t a myth, it isn’t some wandering spook come to visit me, it is NOT a supernatural event or phenomenon. It is a very real and nasty experience that is hitting me almost every night currently and it is being created by my own mind. That’s right folks, my brain is doing me over and I can’t stop it from happening.

No, it isn’t a demon

Have you ever experienced it? It is the sensation of someone or something sitting on the bed, (and you can feel the weight of their presence on the bed,) and laying over you (very bad and freaky when you are sleeping alone) and you literally cannot move a muscle. or speak. You feel as though you are being pushed down into the mattress and held captive by the bedding being held in a tight band around you. You feel terrified as you fight to wake up and scramble to try and move your arms to fight off whatever it is that is laying on you. And, you wake up screaming, and I do mean full on blood curdling, I am being murdered, screaming. But, as soon as you move, the sensation is gone, the fear/terror however is very real and very present.

It has left me exhausted, physically and mentally. I read up about the condition, I searched under night terrors, it came up on our NHS website as sleep paralysis not night terrors, and it is an uncommon occurrence that can afflict a person maybe once or twice in their entire life time. Currently I am on four weeks solid and counting, that’s almost every night, sometimes twice a night for four weeks. The website advises that if it occurs more frequently than the once or twice in a lifetime, you should talk to your doctor because it is being brought on by an underlying medical condition.

It is brought on by stress, insomnia, and PTSD. I deal with all of those conditions on a daily basis.

So, how can it be dealt with? How do I stop it?

Apparently I can take a sleeping tablet that moves me from waking sleep to REM without the paralysis but I can’t afford to take a sleeping tablet in case I need to see to my son in the night. If I have to drive to hospital I can’t be under the influence of medication, I could kill us both. Oh and I shouldn’t sleep on my back. Not very helpful in either case as I sleep on my stomach? It doesn’t mention that one.

So, I am learning to meditate, that isn’t the easy option for me, it requires stillness of mind and I struggle terribly with that. I persevere, but I am fighting with my own mind on all fronts at the moment and I want to scream with the frustration of it all. I have black rings under my eyes that rival a panda and I am short tempered (more so than usual) and irritable, (again more so than usual).

But, I am determined. So, if anyone can offer me any advice or insight into both the condition and how to meditate successfully, I would be forever grateful!

That’s all for now folks… except…

As a footnote: Speaking from a truly atheist viewpoint, I don’t believe in ghosts or spirits. But, and this is where my mind is messing with me, last night, I experienced what can only be described as the phenomenon of the phantom shadow coming at me with mouth agape and sharp fangs on show, something akin to a gargoyle like appearance, or a cat on steroids. I felt it’s breath on my face and could smell it’s breath, it was downright nasty! I lashed out and it disappeared. I felt entirely too stupid for words but my heart was pounding like I had run a marathon. The whole event lasted less than ten seconds. Possibly the longest, scariest ten seconds of my life to date.

That one has freaked me out entirely, because, I know I saw it. I was sat up and wide awake after fighting out of the paralysis. I had just settled back into bed after stomping around the room swearing my head off at the tricks my brain was playing on me, I then calmed down and had a warm water drink to settle me. That was when the mad cat gargoyle thing happened. I have no explanation. I refuse to believe I am going mad, I don’t believe I was hallucinating, the night light was on so the room was not in complete darkness, and… well… fuck it, I don’t know. Feel free to draw your own conclusions! 🤷🏽‍♀️

On another thought… I wonder whether my stress is escaping and running amok around the bedroom while I sleep and is then trying to get back inside me when I am beginning to wake? That would explain the manic cat/gargoyle thing, it’s the best explanation I have come up with so far anyway.

Anyway… that really is all for now folks…

.*♥**♥*★ *♥*..*♥*. BERNARD *♥**♥*★ *♥*..*♥*.

♥♥ ♥♥ MES PLUS BEAUX BISOUS D'AMITIES A VOUS ♥♥ ♥♥

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