Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > General HD topics

Notices

General HD topics Open forum for all other issues concerning Huntington’s disease

Reply
 
Thread Tools Display Modes
Old 11-05-15, 01:53 PM   #1
dmftp
Approved Member
 
Join Date: May 2013
Posts: 35
Default Hospital visit

At work the day before my wife's first assessment for nearly two years. Impossible to concentrate on anything other than tomorrow. Having to take the children out of school and go through it all, whilst trying to act as if i'm not worried.
Am I meant to go and see them as well? I won't get a chance as I will have the three little ones. This illness seems to engulf my every thought and put a stop to ever having the feeling of being truly happy.
dmftp is offline   Reply With Quote
Old 11-05-15, 11:05 PM   #2
Cupcake
Approved Member
 
Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: Hospital visit

Really hope all goes well for you tomorrow, and you are not too stressed.


That care x
Cupcake is offline   Reply With Quote
Old 12-05-15, 12:15 PM   #3
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Hospital visit

Hi dmftp

Oh I wish I'd seen your post yesterday coz I would have screamed "Yes" you need to go with her and in the room with her. Otherwise all she will say is "I'm fine. Never felt better. Infact, I'm getting better - there is nothing wrong with me". Then, she'll get forgotten about for another year or two, whilst back home you remain firmly of the opinion that she's anything but fine.

I know what you mean by feeling engulfed and never feeling happy. It is a cruel and lonely disease. It wears you down and it's hard to laugh and smile and plan anything nice. That's why, my little posts often have a silly comment or joke in - it's not coz I am happy myself it's coz I am just trying to give everyone a moments respite. Good luck with today.
shiraz is offline   Reply With Quote
Old 12-05-15, 08:34 PM   #4
dmftp
Approved Member
 
Join Date: May 2013
Posts: 35
Default Re: Hospital visit

Quote:
Originally Posted by shiraz View Post
Hi dmftp

Oh I wish I'd seen your post yesterday coz I would have screamed "Yes" you need to go with her and in the room with her. Otherwise all she will say is "I'm fine. Never felt better. Infact, I'm getting better - there is nothing wrong with me". Then, she'll get forgotten about for another year or two, whilst back home you remain firmly of the opinion that she's anything but fine.

I know what you mean by feeling engulfed and never feeling happy. It is a cruel and lonely disease. It wears you down and it's hard to laugh and smile and plan anything nice. That's why, my little posts often have a silly comment or joke in - it's not coz I am happy myself it's coz I am just trying to give everyone a moments respite. Good luck with today.
Hi Shiraz

Thank you, unfortunately you were spot on. Almost lost for words. Not even 15 minutes in there, few congestive tests and that was it.

Feel so down and deflated.
dmftp is offline   Reply With Quote
Old 13-05-15, 09:04 AM   #5
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Hospital visit

Hi dmftp

Step aside Doris & David (Stokes/Acorah) there's a new kid on the block!! Spooky or what. Well, I cheated. Seems to be the way and it's exactly what Hubs does everytime - he tells them he's out cycling and playing tennis and walking miles - with me rolling my eyes upwards and gasping in disbelief. I think it's pride, denial, fear, all rolled into one.

Thing is it is incredibly hard to speak out anyway for fear of inciting a backlash once back home. I try and position myself further back so I can make my informative facial gestures whenever a porky is told. I figure the consultants know the score. And I gently introduce things that have happened, more a suggestion than saying out loud no you don't/can't/your'e lying. I wish you were seen alone - it never happens.

Deflated - two year wait for 15 minutes - I'd be livid, you build your hopes up, take time off work, organise the kids for what?!! It really is a case of where you live regards what intervention/assessment/help you get and it is just crazy. You feel alone, trapped, anxious, useless, helpness and full of despair at times. I know I do. Are you in touch with the HDA direct - either by phone or e-mail, they'll have someone for you to chat to and offer advice.
It may well help you.
shiraz is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 05:16 PM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA