Taming & unchaining shame

It’s been with me for years, I could best describe shame as being unable to say what I really wanted to say, suffocated by other people’s opinions or expectations. Sometimes my mind felt it felt like I was a contortionist, my thoughts and emotions were permanently being twisted into what I now understand to be unnatural positions. I wanted to share my most recent poem it’s called

Taming & unchaining shame

He’s there

Mr shame dangling the key

For years I thought I would never be free

Always secretly wanting more

But too afraid to tell

Because if I blew my cover

My life will be hell

So, I would continue to conform, to societies norm

Like a contortionist trying to fit in

But it never seemed to work

And I could never seem to win

I could not find my place

I had accepted my fate

I continued taking the blows

I shelved my desires

But in reality, my life was a show

Each time I gave in

I lost part of my soul

And wondered if I’ll ever feel whole

I wasn’t a bad person

I was just too eager to please

But this got me into trouble because I’d neglected my own needs

But over time I started to question

Mulling over my past, the years of rejection

And realised it was time for some honest reflection

I started listening to my heart

It was time for a fresh start

I learned the peace that I’d been yearning had always been there

All I had to do was take a step back and practice some self-care

The more I truly listened

The more I heard

And I finally found the courage to break free from the herd

I took back the key, from my jailer called shame

And for the first time in my life

I feel like I’m part of life’s game

 

 

Remember you hold the key

Maybe its time to get honest

It’s time to face your reality

#Fuckshame

Remember, try not to be afraid of who you truly are, be proud of your recovery and remember, if you would like to subscribe to more posts, please go to https://www.shithappens.me.uk/contact/ and sign up, If you liked the post please share, if you don’t then do nothing and that’s ok too 

 

End of care for problematic substance misuse – Who decides?

Caring for Dad during the end stages of his Alcoholism has to be one of the most traumatic experiences I had ever done through, even my brush with addiction couldn’t have prepared me or my sister for this journey we were about to embark on.

The more I write about Dad and his story, the more I research it, the more I realise the lack of end of life care or understanding for people with problematic substance misuse and their families is very limited and more needs to be done. Caring for Dad was counterintuitive, working in the treatment and recovery field accepting Dads alcoholism or his inability to break free from it went against everything I believed in.

There were rare lucid moments during Dads alcoholism when he seemed to understand the gravity of the impact alcohol was having on his health. There were numerous times after being released from the hospital that he resolved that he wouldn’t drink again. He tried non-alcoholic drinks, that didn’t last long, he tried sticking to drinking Lager, avoiding spirits or what he referred to then as being “the top shelf”, sadly his attempts didn’t last long.

He flatly refused even the suggestion of support groups, the mere thought of baring his soul in front of strangers was completely alien to him, after all, he was a “proud man and support groups were for whips” he would say. But his reluctance to accept help only fuelled his denial that he could “do this, sort this” on his own. Dads bloody-mindedness caused one of the biggest challenges not just for me and his family, but also for the professionals, who were responsible for his care.

We became acutely aware, particularly in the last 18 months of Dad’s life, that Dad had a serious physical dependency on alcohol as well as the psychological dependence, which made it more difficult to treat. But I was unaware that dads drinking had got to what’s (not) commonly known as End Stage Alcoholism. Looking back, I now realise that all the symptoms were there.

In the last 12 months, in particular, he started to experience many of the comorbidities that occur with end-stage alcoholism. He had been already diagnosed with Cirrhosis of the liver and as a result suffered regularly from Edema (Accumulation of fluid in the legs), Ascites – (Accumulation of fluid in the abdomen). Dad bruised easily and suffered from abnormal bleeding. He suffered terribly from Cellulitis which made his skin as thin as tissue paper and would frequently tear. He showed all the symptoms of Wernicke-Korsakoff syndrome, which develops due to a thiamine (vitamin B1) deficiency. And despite all of this, Dad continued to drink.

He’d slipped into a coma, several times, he had severe memory impairment and was often confused. His refusal to work with medical staff because “He knew better or he knew what was best for him” was at times both exhausting and infuriating, but at the time what could be more frustrating was dealing with the staff.

During each hospital admittance, we would have to go through the rigmarole of trying to explain Dads alcoholism to staff who had never had the pleasure of meeting him before. I felt for the nursing staff who didn’t understand the sometimes-outrageous behaviours and actions of a man who was being detoxed of a substance that was slowing killing him, but who would refuse their attempts at caring.

I would often wonder if they would have been inclined to treat Dad differently if he was in being treated for cancer, I strongly suspect they would have.

I always felt reassured and a sense of relief when dad had been placed on a ward, where staff had, had the pleasure of caring for him before, who understood his case history and could work with his sheer bloody-mindedness. Christ, we were on first-name terms with some staff. But there were other times when I could sometime see the frustration and disdain in some of the staff’s eyes, who seemed to resent treating someone whose health conditions were in their eyes “self-inflicted”.

Dad, his symptoms would change daily, one minute he was picking up the next he was deteriorating and tracking down the ward doctor was near on impossible. I would try and read his notes at the bottom of the bed to see if I could make any sense of what they’d written but it was futile none of it made any sense it was just gobbledygook. Towards the end, Dad hardly drank, but it was too late the damage was done and deep down he knew it too.

“People with problematic substance use (PSU) meet hostility, suspicion and frustration from a range of care professionals regularly. It prevents service access and can lead to mutual suspicion and mistrust. Professionals need to counter stigma and stereotyping around people with PSU to regain this trust” (2019) Good Practice Guidance, S. Galvani, Dr S Wright, Dr G Witham 

Every time he was released from hospital his physical and mental health only seemed to be deteriorating further. We no longer wondered “would Dad Die” and started thinking “Not if, but when?”. Which makes me contemplate the question “Could Dad have been offered palliative care sooner?”

Dad had carers, but their primary role was to tend to his bedsores that had developed after spending prolonged time in the hospital after contracting MRSA. More often than not, it would be the carers who would make the call for the ambulance, at the protest of Dad, because all he wanted to do, was die at home and to be left alone. But he wasn’t allowed that right.

Everyone is entitled to refuse healthcare treatment, however, the one exception to this rule is if the health professionals in charge of your care think you cannot make an informed and voluntary decision then that right is taken away. In the last few months of Dads life I’d stopped going to the hospital immediately after he’d been admitted, I would find out which wards he’d been admitted to and email them a bio about Dads condition and what to expect once he became compos mentis, only then would I go visit him. After coming around the staff would be met with a tirade of anger and frustration from Dad because all he wanted to do was say at home and die, but staff just deemed him as being difficult.

On the morning of Dads last day, we were concerned we’d found him on the floor his breathing was very laboured, but compos mentis enough pleading not to be admitted again. My sister worked for the NHS district nursing team at the time, she’s called a colleague around for some advice. When she arrived, dad was still adamant that he didn’t want admitting to hospital, “I want to be at home wi me babbis” those were his exact words, so she made a call to his local GP. The GP arrived and it transpired that his laboured breathing was because he’d contracted pneumonia AND because he’d heard Dads wishes himself, Dad was finally allowed to stay at home.

Immediately the doctor arranged for a Marie Curie Nurse to come around, which surprised me because I thought that they were just called for the end of life cancer patients. The Marie Curie Nurse was amazing, I remember feeling guilty that Dad was being treated for end of life because of his alcoholism when she could have been treating someone from cancer. But she explained that their role was to free nursing care to people with all terminal illnesses as well as support for family and friends.

During my researching for the book, I am learning more and more. I recently came across a research project, which ran for two years between 2016/18, funded by the Big Lottery the research programme was the first of its kind to explore current practice and service experience from a range of perspectives around the end of life care offered to people with problematic substance use, and their families, friends and carers.

As part of the project, they interviewed the patient, health care professionals and their loved ones. They have created a brilliant website https://endoflifecaresubstanceuse.com/ which is AMAZING

As I listened to the family’s stories, I immediately felt I wasn’t alone the guilt and shame and the denial that comes with addiction Listen here 

Responsibility and recrimination / Powerlessness and anger / Guilt and self-blame Listen Here 

After my own experience and hearing other people’s stories I am more determined to advocate and champion the support and care needs, not just for the patience (who happens to have a substance misuse problem, but for their family, loved ones and carers.

I have come across some really helpful sources of support so I thought I would share them with you

BEAD is a great source of information and support for anyone bereaved through drug or alcohol use

Marie Curie has some helpful information for families caring for someone at the end of life due to substance misuse.

I truly believe that as well as the patient all families have the right to be heard, assessed individually, given appropriate training and information to allow them to support their loved one safely, to be able to plan with ongoing support and monitoring from healthcare professionals.

#Familysupport #FamiliesMatter

So watch this space

Remember, try not to be afraid of who you truly are, be proud of your recovery and remember, if you would like to subscribe to more posts, please go to https://www.shithappens.me.uk/contact/ and sign up, If you liked the post please share, if you don’t then do nothing and that’s ok too 

 

 

 

The importance of practising self-compassion in early recovery

I am not a woman faith, I simply cannot get my head around buying into ancient stories told many years ago, by a man who I have never met. But I did learn an important lesson during my early recovery and it was in a church.

Years ago, I was at a friend’s house one day, having a coffee when another friend of hers called round for a chat. I’d never met her before, but as my friend introduced her to me, she told me that as well as being a mate, she was a medium. I scoffed at the thought, she looked far from being someone I would have thought a medium, whatever they are supposed to look like. She sat opposite me at the table and started to tell me how she could see I had just been through a bad time, but that things were looking up for me. I wasn’t impressed by her forwardness, I mean I hadn’t asked for a bleeding reading.

I laughed, she couldn’t have been further from the truth, I hadn’t just been through a bad time, my life was a fucking mess. I’d not long since come out of Middlewood, I was living in a one-bedroomed flat, with two kids and had nothing to my name, I remember thinking, ‘you haven’t got a fucking clue mate.’

She said that she could see me at the cathedral in the city centre, I scoffed at her words, I had never been to the cathedral and had no plans on going neither. She said some other things, but to be fair I took no notice of her. I didn’t stay long at my friends that day and left thinking she was a full-on weirdo, so disregarded everything she had said and never thought about her again.

A few months had gone by since my encounter with said weirdo, life was still rough. I had recently been given a three-bedroomed maisonette but had no money to furnish it. I was a single parent trying my best to make their lives as normal as I could, ashamed of myself as a parent for allowing my kids to live with nothing. I had walked away from my old associates, and the familiar chaotic lifestyle, I had stopped buying and selling stolen goods. I was no longer using, I had been clean for a while, but it was still hard. I had to sell my beloved car to help make ends meet, I was lucky at the time to have a closed friend who had been recently banged up and insisted that I make use of his car to help me out. Apart from the close family, the only person that I relied on was a CPN nurse who would come and visit me once a week for support.

One morning, I had a sudden urge to go to the church, at first, I tried to disregard the thought, I had hardly any petrol in the car and I certainly had no money for parking. But it wouldn’t go away, something, someone said ‘it’s ok, it will be ok’ as I drove into the city centre, I felt a sense of calm, a sense of purpose a feeling I hadn’t felt for a long time. All I knew was that this feeling was something different, a sense of calm that no amount of drugs had given me, despite all the promises.

I parked outside the cathedral, I remember thinking how large it was, being close up and wondered how I would get in or even if a building of this stature even opened its doors to members of the public or people like me who had no faith. Thankfully the entrance doors were open, walking in slowly I noticed how the building was cool, but at the same time, it was warm and inviting.

This is the first time I had ever stood inside the building; I had walked past it many times in the past during visits to the city centre. I was in awe if of the architecture, the intricate designs that had been crafted out of stone, by someone’s hands many years ago.

There were rows and rows of benches in front of me, with only a couple of people sat silently apart doing what? I didn’t know. All of a sudden, like being woken from a spell, I looked around and questioned why I was there, I felt out of place, I questioned ‘I didn’t belong here’ and was in two minds to turn around and walk out of the building, but something, someone said, ‘it’s ok just keep walking’.

The silence was deafening as I walked deeper into the church. To the right of me, I could see a set of benches separate from those in the main hall, I made my way there. I sat on one of the benches, I looked up and thought ‘now what?’

As I sat down and I felt vulnerable, I felt an overwhelming sense of sadness. My mind took me back to recent events and I shuddered at the reminders, ashamed of how I had hurt loved ones, but also hurt and angry towards those who I felt had let me down or who had hurt me. The memories came in waves my emotions got the better of me and I realised I was crying, silently. For a moment, I was glad I had chosen this part of the church, out of the way from the others so that they couldn’t see my tears.

Alone in my thoughts, I recalled each memory that had brought me pain and heartache, but as the pain started to peek, I was enveloped by what felt like two big arms, wrapped around my shoulders and heard whispers of someone saying, ‘it’s ok, let it go’. One by one the memories came, heartache bubbled, threatening to overwhelm me but just as it reached its peak, I heard the comforting words followed ‘it’s ok, let it go’. As well as the comforting words, it physically felt like someone, something was washing away the pain and hurt that I must have been carrying around, for how long, who knows. All I know is though that it felt like nothing I had ever felt before.

At one point, I panicked, I suddenly remembered my car parked outside without a ticket on it, worried that when I returned that there would be a yellow ticket. A fine I was in no position to pay, but then the words came again ‘it’s ok, let it go’.

I don’t know how long I sat in the church, but I stayed there until there was nothing left, no more tears, but best of all, the sense of sadness that I had been carrying around with me since walking out of the gates of Middlewood was no longer there.

I have never felt calm like it, I felt like a different person. As I walked out of the church doors, I felt like I was in a parallel universe, it was like walking into a different world. The hustle and bustle of buses and people going about their day to day business. Shoppers were completely oblivious to little old me standing there, still confused about what had just happened to me. I felt a sense of lightness as I walked towards the car and even before approaching it, I knew that there would be no yellow ticket waiting for me. And when I got there, there wasn’t, and it wasn’t until a few days later that the conversation I had previously had with the said ‘weirdo’ came back to me.

I still to this day don’t know who was talking, who was comforting me or even if it was me comforting myself all I know is that it felt like I had truly experienced compassion for the first time in my life. During some of the lowest moments in my early recovery, I learned the importance of self-compassion and it is something I still practice to this day.

I often find that I have an abundance of compassion for others, but still to this day find it hard to save some back for me. There are still times when I doubt or mentally berate myself, but then I’m taken back to that memory in the church. It’s a reminder that I don’t have to carry negative thoughts or feelings, I can choose to let them go. So when I am feeling low, I make time to practice some self-compassion.

Practising self-compassion

Investing in self-compassion takes time to accumulate, you cannot buy it off a supermarket shelf, it isn’t like winning the lottery where it happens to a small amount of ‘lucky people’ anyone can acquire it and it is something that can be learned and cultivated.

Practising self-compassion is about treating yourself with the same kindness, gentleness, and acceptance you likely already extend to others. it about accepting that falling short or being average is simply part of being human, and therefore unavoidable.

So, if I’m, feeling low I will often take myself off into a corner practice a little self-compassion, go Haveawordwimesen and tell myself ‘to let it go’ and remind myself ‘I’m doing my best’.

Do you invest in self-compassion? If you don’t? why not open your own Self-compassion bank account, there is no joining fee, just a willingness to be kinder to yourself. You can make a daily or weekly deposit of self-compassion and before you know it you will be the wealthiest person you know.

My circumstances have changed a lot since living in that bare, three bedroomed maisonette on Arbourthorne, but if I have learned one thing in the past 50 years, it is that whilst material wealth can be nice, it isn’t as important as our mental & emotional health. I could have the nicest house, car, or holidays abroad, but it is worthless if I don’t like myself.

Click here for a great article about it

Remember, try not to be afraid of who you truly are, be proud of your recovery and remember, if you would like to subscribe to more posts, please go to https://www.shithappens.me.uk/contact/ and sign up, If you liked the post please share, if you don’t then do nothing and that’s ok too 

Love Fordy x