Hi, my name is lourex! — Scope | Disability forum
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Hi, my name is lourex!

lourex
lourex Member Posts: 2 Listener
edited April 2021 in Start here and say hello!
I woke up one day in severe abdominal pain and distension, I look 8 months pregnant. I have been bedridden since 11/8/2017. I'm in pain 24/7, my pain killers put 20kg of.weight on.
All the skin on my hands and feet died, it blistered up and fell off so did my nails. 
Plus I'm a mum to a beautiful litle.girl and feel like (Removed by moderator, profanity) at not being able to do that properly.
So enough about me hi guys how is everyone ?

Comments

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @lourex - welcome to the community, & thank you for joining. I'm very sorry to read about what you're going through, & how difficult it must be as a Mum. Is your GP supportive, & have they been proactive in finding the cause of your problems?
    Thank you for asking, I'm doing OK, tho living with chronic daily pain too. You'll find everyone here very friendly, so I'm sure you'll enjoy being a part of the community.
    Do try our virtual 'Coffee lounge,' which is a good place to start. You will meet other members, & you can join in with the word games we have there. :)
  • Ross_Scope
    Ross_Scope Posts: 7,436 Scope online community team
    Hello @lourex

    Welcome to the community and thank you for speaking so honestly about what you're going through, I'm sorry to read that things have been, and continue to be, hard for you.

    Is your GP aware of those symptoms? I wonder if they would be able to suggest an alternate form of treatment for your pain that won't cause you so much discomfort. 

    I think it's important not to blame yourself for your situation, you might feel guilty as a parent but I'm sure you do the best you can, and that your best is still superb. Do you have anybody else living with you to help care for and support your child?

    And you mentioned being bed ridden for over 3 years, do you receive any support to help you get out and about and keep you mobile? That's a very long time. 

    I am very well thank you for asking :) 
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  • janer1967
    janer1967 Member Posts: 16,336 Disability Gamechanger
    Hi and welcome from me too 

    You really seem to have gone through a lot , I empathise being a single disabled mum myself  . That's the hardest part I find 

    We are all here to support and there is usually people around to talk to feel free to join in or ask any questions 
  • lourex
    lourex Member Posts: 2 Listener
    Thank you for being so nice. My husband is fantastic and helps me when I need it. My GP is confused, she has never heard of APD and tries her best. We don't get help from anywhere My family are in UK and im in AUS. 
    My stomach is really distended and tender I can't wear anything around my stomach because it hurts and causes more pain. I had a ketamine infusion and that eased the pain a bit.

    Sorry to be so miserable lol x
  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    Hi @lourex and welcome to our community!  It's great you found us all the way from sunny Australia  :) How is it over there today?  Warmer than here I imagine!

    I'm sorry things are so difficult for you at the minute and no wonder, what you describe sounds very painful.  I really admire you coping with this life change, I know it can't have been easy and it's great you have your husband to support you too. 

    When you say APD does that mean 'Acid Peptic Disease'?  And also, have you been referred for investigations to confirm that this is definitely the case and determine appropriate treatment?  I do hope so, but if you haven't make sure to impress upon your GP how much this is impacting your daily life and your close relationships too.  

    I wonder, would it also be worth changing GP's if you feel that their current input isn't great?  I know what you mean about them trying their best but sometimes a second 'pair of eyes' can shine a new light on situations and offer up alternatives to explore - that's maybe something to consider! 

    No need to apologise to us either, you aren't miserable and what you're feeling is entirely understandable.  It would be great to see more of you on our community, so make sure to give our recent discussions a little nosey or our coffee lounge too, and join in wherever you like :)  Take care and speak soon!
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