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Stuck in hospital

abbeym395abbeym395 Posts: 19Member Courageous
Hello everyone!  I have been stuck in hospital for most of the last 3 weeks.  I have had two failed discharges and was only out for a total of 5 days.  They are calling it functional nausea and vomiting.  They've withdrawn my IV fluids but I'm going to push for some to be restarted after I nearly collapsed when I went down to reception earlier!!  Tomorrow I'm being trialed on a NG tube to supplement the small amounts I can eat.  I'll also be getting a midline if they restart my IV stuff as my veins are destroyed.  I also have mental health problems, IBS, chronic pain syndrome and a few other bits and pieces.

I was hoping to find some comfort among other people who know what it's like to have a body and brain that don't like talking to each other properly.

So hello!!

Replies

  • Adrian_ScopeAdrian_Scope Posts: 3,487Administrator Scope community team
    Hi @abbeym395 and welcome to the community. I'm sorry it sounds like you're having such a rough time. Do you have much of a support network around you?
    Please let us know if we can offer you some advice with anything.
    Senior Online Community Officer
    Scope
  • abbeym395abbeym395 Posts: 19Member Courageous
    I'm just feeling frustrated and angry because I just got seen by a doctor who wasn't even aware of the NG recommendation.  It's like they're so desperate to get me out to they're not thinking about my needs in the medium term.  I have very little in the way of a support network unfortunately.  It's looking like if I get an NG, it won't be until tomorrow.  Otherwise they're sending me home.  I just don't know how to get my feelings listened to.
  • steve51steve51 Posts: 5,824Community champion Disability Gamechanger
    Hi @abbeym395 ;

    Good Afternoon & Welcome it's great to meet you today 🌝

    I am very very sorry to hear about your current situation/problems.

    Yes I have been in your "situation" more "times" than I have had "Hot Dinners"

    Please please contact me if I can be of any "help/support"

    @steve51 ;
  • abbeym395abbeym395 Posts: 19Member Courageous
    Thanks for the offer :) it's a horrific place to be, that's for sure.
  • thespicemanthespiceman Posts: 4,804Community champion Disability Gamechanger
    edited July 23
    Hello @abbeym395   Pleased to meet you welcome .

    Thank you for joining and sharing.

    Sorry to hear what you are experiencing.  We as a community do understand .

    I am one of the team of community champions. We guide and advise new members who join the community.

    I know this is not easy to deal with . Feel for you.  I do think you need to speak to some one like PALS .

    Patient liaison services or speak to RETHINK .  Have a look on line might be worth speaking to RETHINK.

    https://www.rethink.org.

    Helpline advice line 0300 500 0927

    They are an advocate service for those  with mental health issues and additional problems not getting any answers with their care.  NHS services and any treatment involved.

    Just an idea for you. I know might be interested in helping you.

    No one wishes to see a valued member having problems with treatment and care.

    Wish you well in your recovery.

    Any problems please ask . We are here to help and advise. A member of our team or a member of our community.

    Please take care.

    @thespiceman




  • megan_parkermegan_parker Posts: 12Member, Community champion Connected
    Hi @abbeym395

    Lovely to meet you. I am so so sorry to hear about what you are going through, my dad is currently facing a similar situation and has been in and out of hospital 4 times now so I completely understand how frustrating it is. 

    You can always come here for support and we will always try to help if we can.

    I hope things start to look up for you soon!
  • Adrian_ScopeAdrian_Scope Posts: 3,487Administrator Scope community team
    I'm sorry @abbeym395. That's a really tough situation to be in. Have you had any news today?
    Senior Online Community Officer
    Scope
  • abbeym395abbeym395 Posts: 19Member Courageous
    Yes, I have.  They're sending me home.  They think that with my dietary restrictions I'll be better able to eat if I go home.  But my main worry is fluids.  The sister came and talked to me for a long while and she's going to yell at the mental health team and get them to help me more.  I just fear that by the weekend I'll be back.
  • thespicemanthespiceman Posts: 4,804Community champion Disability Gamechanger
    Hello @abbeym395   Thank you for sharing with the community. 

    Please can I ask did you have time to contact RETHINK.?

    Just because you have a mental health team if they are not working for you then contact RETHINK.

    Every one deserves good mental health and support.

    Intervening might be supportive and seek some answers with your care.

    Advocate service useful because they can speak on your behalf with your permission discuss before hand with you what you need to ask Doctors or mental health team.  They then talk to the people in involved with your care.

    Hope that helps you.

    Please keep in touch.

    Take care.

    @thespiceman


  • Adrian_ScopeAdrian_Scope Posts: 3,487Administrator Scope community team
    Hope you're doing okay @abbeym395. Are you back at home now?
    Senior Online Community Officer
    Scope
  • abbeym395abbeym395 Posts: 19Member Courageous
    Yeah.  Managed a little food but feeling quite sick now.
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    Definitely talk to PAL. Give them a call to discuss your situation tomorrow and see what happens. Keep us posted. 
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    How are you doing today? 
  • abbeym395abbeym395 Posts: 19Member Courageous
    I'm struggling.  Using my wheelchair because I'm just too unsteady to walk very far even with my walker.  But I'm out, and trying to make the best of it even if my stomach doesn't really want to know!!
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    Great update! We are currently in the hospital as my son’s bowel and bladder issues have worsened over the past few months. Waiting to see his regular doc. 
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @abbeym395, thank you for updating us. I'm sorry to hear that you are struggling to move around. Do you have any follow up appointments to see anyone about this?
    Chloe
    Online Community Officer
  • abbeym395abbeym395 Posts: 19Member Courageous
    My GP did some urgent blood stuff today but I'm not sure what they plan to do if they come back normal.  Frankly I'm really struggling and might have to go back up to the hospital soon.
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    I hope you don't have to wait long for the results @abbeym395. I'm sorry to hear you are really struggling. Would you be able to get to the hospital if you needed to go back in?
    Chloe
    Online Community Officer
  • Adrian_ScopeAdrian_Scope Posts: 3,487Administrator Scope community team
    How are you doing today @abbeym395?
    Senior Online Community Officer
    Scope
  • abbeym395abbeym395 Posts: 19Member Courageous
    I ended up in a and e after my last post as I got really lethargic and confused.  But my bloods were normal enough so they refused to treat me or admit me because they didn't think it would help in the long term.  The doctor was really kind, said that I was being stronger than she'd ever had to be which is really sticking with me and driving me forward.  I'm really struggling but managed, somehow, to get a mini kitchen set up in my bedroom last night.  I've also been seen by a service that should help me advocate and get the multitude of agencies supporting me to actually talk to each other.  She's also going to try and get an OT assessment done to get me some equipment for me.
  • pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
    sending all best wishes abbeym xxx
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @abbeym395
    I'm sorry to hear you ended up in A&E, I hope you are feeling a bit better today!
    The service sounds really positive so I hope they are able to help. The OT assessment sounds promising as well :)
    Chloe
    Online Community Officer
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    The service sounds like a good one. I hope that they can offer you some answers soon! What tests were done? Have the results come back or not? 
    Let us know what happens at the OT evaluation. 
  • abbeym395abbeym395 Posts: 19Member Courageous
    Thanks for the support everyone.  They only did bloods this time which were all basically normal.  I'm starting to get very fed up with everything and my mental health is declining but I'm fighting it all.
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    Are you seeing a therapist or not? Talking about your mental health does help seriously. 
  • abbeym395abbeym395 Posts: 19Member Courageous
    I'm under the mental health team but they're useless.  I'm currently waiting for an ambulance after an OD, other SH and an urge to hurt others.  Scared but my partner is helpful.
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    Definitely call on Monday. 
  • abbeym395abbeym395 Posts: 19Member Courageous
    I'm up at hospital now as the ambulance was concerned about the new symptoms.  Now waiting to be sent somewhere in a and e.
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    abbeym395 said:
    I'm up at hospital now as the ambulance was concerned about the new symptoms.  Now waiting to be sent somewhere in a and e.
    Hope you feel better soon!
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @abbeym395, how are you doing today?
    Chloe
    Online Community Officer
  • abbeym395abbeym395 Posts: 19Member Courageous
    I am incredibly rough.  Waiting to see GP for another potential readmission.  The liaison psych person on Saturday tried to scare me by saying I'd end up in prison if I didn't stop saying I was hearing voices telling me to hurt others, basically.  I'm in so much pain, I'm barely sleeping, I'm vomiting and fed up.  My mental health is now as poor as my physical health and oh, the council is threatening to evict me for the mess that I've been trying to get help with for MONTHS.

    I actually hope they readmit me so I can actually get things sorted out.
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @abbeym395, I'm so sorry to hear this, it sounds like things have been really tough recently. I really hope they can sort things out as well. 
    Chloe
    Online Community Officer
  • abbeym395abbeym395 Posts: 19Member Courageous
    GP was worried but knows a physical health ward is not the best place for me right now.  She's giving it until tomorrow morning, chasing mental health and if nothing improves then off to hospital I go 
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    I'll keep my fingers crossed for you! Thank you for keeping us updated :)
    Chloe
    Online Community Officer
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    You are in my prayers!
  • Adrian_ScopeAdrian_Scope Posts: 3,487Administrator Scope community team
    Thinking of you @abbeym395. Hope it goes okay.
    Senior Online Community Officer
    Scope
  • abbeym395abbeym395 Posts: 19Member Courageous
    Well I saw the doctor, she noticed how dehydrated I looked and basically said there was nothing she could do apart from poke mental health.  So the buck is being passed.  Again.  Made another appointment for Thursday so we shall see.  Fed up with one person saying one thing then the next saying something different!
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    I'm sorry @abbeym395, I imagine being past from person to person is confusing and frustrating! I hope Thursday goes okay :)
    Chloe
    Online Community Officer
  • Adrian_ScopeAdrian_Scope Posts: 3,487Administrator Scope community team
    How'd the appointment go @abbeym395?
    Senior Online Community Officer
    Scope
  • abbeym395abbeym395 Posts: 19Member Courageous
    It was good :) One of the people supporting me came to help and this was with my named doctor and he gave me all the time I needed and extra support too.  Then I went and had a coffee with the support worker and we talked everything through.  Feeling more optimistic.  Not going to let this define my life.  Been swimming today at doctors suggestion to keep my legs stronger.  Feeling supported for the first time in awhile.
  • Adrian_ScopeAdrian_Scope Posts: 3,487Administrator Scope community team
    That's brilliant @abbeym395. Really glad you're feeling a bit better about this. :smile:
    Senior Online Community Officer
    Scope
  • abbeym395abbeym395 Posts: 19Member Courageous
    Unfortunately it was somewhat short lived.  My ability to eat and drink has deteriorated again and my sleep is appalling.  But my test results are fine so nobody seems to care.  My head is pounding my bowels are ridiculous and I get so tired doing even the smallest thing.  I don't know where to turn or how to handle this as everyone just seems to be shrugging their shoulders and saying they don't know.  And the last few days I've come across so many people with a bad attitude towards me because of my wheelchair and it's driving me nuts.
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    I'm sorry to hear that @abbeym395, how are you doing today?
    Chloe
    Online Community Officer
  • abbeym395abbeym395 Posts: 19Member Courageous
    I found a GP that was willing to listen on Tuesday, after my dietician told me to see them.  They've helped me push to get my gastro appointment moved to next Wednesday.  I feel like hell and I'm barely eating but at least I have that to aim for now.
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @abbeym395, I'm glad you were able to find someone to listen to you. I really hope the appointment is helpful and you'll know more after that! 

    Wishing you a lovely afternoon Abbey!
    Chloe
    Online Community Officer
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