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hepatic encephalopathy - Blocked on Social Media -

englishgirlabroadTransplant Patient
September 25, 2022 in Liver

Getting ‘blocked’ is never nice, but what if you are in recovery? Cognitively impaired, and sometimes struggle with understanding social situations?

That’s something I live with – but also the horrible realisation that I can’t go back in time and heal the wounds I might have caused when as a sick person I wasn’t in my right mind

This is what I had sent:

Hello you – long-time no speak. I really hope I didn’t do or say anything to upset you as it has now become clear that I still had hepatic encephalopathy for a long time as my conversation ability was off ) Anyway – it looks like you are off to a wedding, and I I hope its fantastic – but if you can forgive whatever I did or said It would be lovely to catch up again one day with you one-day xx

I waited – then logged in – and I had been blocked. The User couldn’t be found but when logging in through another’s Instagram – yes – she was still alive. I had been blocked. Blocked again by someone.

It’s bad enough when a prospective love interest blocks you, but what about when a same-sex family friend’s child, who you used to get on with, does? Or any friend, for that matter.

It’s horrid and shakes me to the core, but I am almost getting used to it now.

The thing is, no one warned me that my liver failing would **** up my mind as well as my body. I thought the worst that could happen was a slow, painful, ugly death. I was wrong.

Hepatic encephalopathy- where toxins from the body, no longer filtered by the liver, reach and start to addle your brain caused chaos in my life before the transplant, and even afterwards, there was a chunk of time my mind just wasn’t right. (And maybe still isn’t)

What is hepatic encephalopathy?

Hepatic encephalopathy is an often-temporary neurological (nervous system) disorder due to chronic, severe liver disease. A diseased liver struggles to filter toxins (substances created from the breakdown of food, alcohol, medications and even muscle) from the bloodstream.

https://my.clevelandclinic.org/health/diseases/21220-hepatic-encephalopathy 16 Apr 2020

(Anything with a TICK is something I now recognise as seeing in my past self.)

What are the symptoms of hepatic encephalopathy?

People with hepatic encephalopathy experience impaired brain function. Symptoms include:

  • Anxiety or irritability – TICK
  • Cognitive impairment (confused thinking or judgment) – TICK
  • Coordination or balance problems – YUP
  • Difficulty concentrating or short attention span – TICK
  • Flapping hand motion (asterixis).
  • Mood or personality changes – TICK
  • Muscle twitches (myoclonus).
  • Reduced alertness – TICK
  • Sleep problems.
  • Slurred speech,

I was almost fortunate in getting (now at this later point recognising that I had) just the anxiety, irritability, impaired judgement, mood or personality changes – but then, step back and imagine how monumental those things can actually be?

No one warned me of any of this. Probably because there is some NHS guideline that says ‘Don’t tell the patient about some symptom of their illness or disease that might ruin their life, just in case it doesn’t happen to them.” Because I would have rather known.

I had one friend be brave, and it was like being stabbed when she told me via a message that although she did understand about health complications, the person I had once been hadn’t been very nice. I hadn’t been thoughtful and, in a probably accidental way, had made her feel uncomfortable, which wasn’t kind.

This was unimaginable as I am someone who really can’t bear it when someone doesn’t like me and therefore bends over backwards so as not to offend or upset. But it was the truth. She was brave, and I respected that and appreciated it greatly.

To all you others, well, if you thought this was a better way, maybe we can blame your manners on your parents? Because if this is the way society believes it should and can behave, we live in the saddest of times.

A problem shared is a problem halved; a misunderstanding, once explained, can be remedied. An unfortunate incident, if apologies are given, leads to maybe a reunion or, if not that, at least me learning how on earth I went wrong.

Not knowing is the worst thing.

Not knowing if I do it all the time, or maybe just sometimes, and perhaps I will do it again?

How can I improve if I don’t know where I failed? Why won’t you let me have the opportunity to make amends?

But time is precious, and people are picky.

I’m not everyone’s cup of tea.

Tomorrow I will tap on this. Tap on ‘What the **** is wrong with me that people think it is okay to block me without reason”. Then pray this doesn’t lead to an increase in my social anxiety and my fear of social interaction.

Oh yes, don’t think it’s just paranoia that haunts me. Growing quietly in the crevices of my self-worth and self-confidence is fear of you all. Fear of all you I haven’t spoken to, but would like to, but think you won’t like me, won’t want to know me. With actively dislike me.

Sometimes I cautiously hope I’m getting better. Sometimes I manage to think, ‘Maybe the universe just doesn’t want this person in my life,” but then the other voice pipes in. 

“No, you are right, they won’t like you, and even if they do, once you start to be yourself, well, then you will say something that upsets them or pisses them off, and then they will block you. Block you and disappear.”

That’s what you live with when you take a myriad of medications – the risk you might be saying the wrong things and people misunderstanding you. And the added weight of the paranoia that even if you aren’t, you might have or you might again.

Years ago, this would have sent me spiralling.

Now I employ a recovery program.

  1. Acknowledge feeling – what is the emotional charge? 1 -10
  2. Write down any negative thoughts that come up when you think about it
  3. Tap/EFT round on this occurrence using the words and phrased you have written down
  4. Do this between 5 – 10 times –
  5. Drink water.
  6. Meditate
  7. Now go back and see if your score has reduced.

If you ever want to try EFT/ tapping I do offer a free session on my website www.theeftacademyuk.com – message me and I can teach you EFT and we can work through whatever might be troubling, you.

@theeftacademyuk

1 - 5 of 5 Replies

  • Sdey0522Transplant Patient

    @englishgirlabroad - thank you so much for educating me about Hepatic Encephalopathy. No matter what, it appears tbat you're a #warrior who knows how to navigate through life's toughest challenges 👍Please keep doing what you're doing to educate & help people.

    #nevergiveup & take care of yourself.

    September 25, 2022
  • MelsammTransplant Patient

    I had HE early in my liver disease b/f my TP even b/f I knew how sick I was. It was the worse thing in my life I have ever been thru. I put my family, work and my friends thru it, especially my Dad. So I completely understand.

    September 25, 2022
  • AliEm14Expert
    Transplant Patient

    Thank you for sharing! I don't share your exact experience, but a combination of trauma, liver disease and medication did impact my cognitive abilities. Its tough now looking back, knowing I have to take accountability for what I did, even if I wasn't me. Some of the people I hurt probably won't give me a second chance, and I'm becoming ok with that. They have their own path, their own side of the road to focus on and all I can do is my part. Making sure my thoughts and intentions are clear, doing what I know is my part to make amends and then letting go of the situation has been huge. If I try to force them to have connection with me, or ruminate on the situation, that just feels like another form of manipulation, which isn't the goal. Forgiveness doesn't always mean reconciliation, and that's on their part too. All I can control is my own energy and response to the situation

    September 26, 2022
  • MelsammTransplant Patient

    I totally agree with what u r sharing. Ty. I really wished that my Dr. would have told me about HE.

    September 26, 2022
  • englishgirlabroadTransplant Patient

    Thank you to all those who have commented. I really feel there should have been more information given to us so we could have warned those we cared about. xx

    September 30, 2022
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