Cushings disease — Scope | Disability forum
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Cushings disease

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Hadley9th
Hadley9th Community member Posts: 8 Connected
edited October 2019 in Disability rights and campaigning
Is anyone on here with a Pituitary or adrenal insufficiency? 
I'm 7 years in remission from the condition and it has left me with so many problems that no one understands.
I had an ACTH producing pituitary tumor that caused my body to make to much cortisol,  which is the fight or flight hormone.
I was a healthy confident woman who bought up 2 children alone after my husband left. For years I was a size 10/12, I exercised, held a physical job and travelled alone.  Now I'm a size 20/22 ,  have to use a wheelchair to go out, frightened to go out alone, as I may go into crisis, have lost the majority of my friends and spend most of my time in my pyjamas.  
My husband is brilliant, but I miss female company doing girlie things. I look in the mirror and no longer recognize myself, I don't like what I see, so why should others I suppose. 
I'm scared of coming out of remission too. I've been told surgery is to high risk for me too. So what would happen?? !!!
Sorry this a long post, I had people to talk too whilst I had Cushings, now I don't want to keep on at my husband about "stuff".
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Hi @Hadley9th, I'm sorry to hear this. I think when our health takes an unexpected turn, it can have a devastating impact on our mental health. Have you been receiving any emotional support from your GP?
    Disability Gamechanger - 2019
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  • Hadley9th
    Hadley9th Community member Posts: 8 Connected
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    My GP has been amazing. She listens well, unfortunately whenever I go it's about another ailment so no time for talking about these things. And you know how difficult is to make appointment with your GP is.
    I talk to people on fb with my condition,  have even met a couple.  I miss all the girlie fun, were never to young for that.
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    I know what you mean. When you say girly things, do you mean like pampering, etc?
    Disability Gamechanger - 2019
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  • Hadley9th
    Hadley9th Community member Posts: 8 Connected
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    Yeah, window shopping, lunch etc. I would absolutely love to get my make up done, put on a nice dress and go out. I have some lovely clothes, but nowhere to where them lol
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  • paffuto10
    paffuto10 Community member Posts: 388 Pioneering
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     @Hadley9th

    Hi and welcome  :)

    Sorry you're really missing the girlie things. 

    Have to say though, your pic is an inspiration!  You look gorgeous in that dress and modern hairstyle  :)

    Thank-you for that. I must pull myself together and improve my appearance. I look a mess!  :p
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Nothing better than a spot of window shopping! I'd love to be able to do it more often too, maybe you could put the idea to the support group you're involved in? Organise a pamper session, or a nice meal out with a few of them :)
    Disability Gamechanger - 2019
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  • paffuto10
    paffuto10 Community member Posts: 388 Pioneering
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     Just realised (in case anyone thinks I'm bonkers)  :p
    @Hadley9th's full dress can be seen on her info page, not on this one! 

    Lovely pic x

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  • Hadley9th
    Hadley9th Community member Posts: 8 Connected
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    @paffuro10 Thank you. Youve  made my day. I love my clothes. I buy most on Ebay or in sales. My hair  I'm very lucky with. Its thick and luckily didn't fall out during Cushings. I try to look my best whenever, I go out. Its makes you feel better. If I can help in any way please ask. I love helping to find a new look etc.
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Welcome to the community @Hadley9th! Sorry to hear you are missing out on things like this, I appreciate how difficult this can be. 

    Can't beat a bit of window shopping and a lovely lunch out! What things do you do at the moment? I like doing crafts when I can't get out of the house much.
    Scope

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  • paffuto10
    paffuto10 Community member Posts: 388 Pioneering
    edited October 2019
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    @Chloe_Scope

    I confess to too much gaming (love Skyrim) when I can't get out much. 

    Then complain to son that he's Gaming too much!!!!   :p
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Haha, nothing wrong with a bit of gaming @paffuto10!  :D
    Scope

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  • Hadley9th
    Hadley9th Community member Posts: 8 Connected
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    @Chloe_ScopeI took up beading 2 years ago. Started with simple bracelets then taught myself to make Christmas decorations, and now I'm onto flowers. I love it. But so expensive.  I like to cook to, but unfortunately that's a struggle now. No strength in my arms. I also forget I've put something in the oven lol. 
    I can no longer read as I forget what I've read. So it's like groundhog day, re reading the same paragraph over. Love horror films. Anything spooky.
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    The beading sounds beautiful @Hadley9th! I love to crochet, although I don't do it as much as I'd like!

    I'm sorry your memory has impacted some of your hobbies, do you think audio books would help? 
    Scope

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  • Hadley9th
    Hadley9th Community member Posts: 8 Connected
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    @Chloe_Scope
    I have tried them, but again I've forget what's happened. That's why films are good, cos watching a story has more of an impact. Unless it fast going with too many characters then I get confused and fidgety lol. I play a lot of word games on line and Quiz up. 
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    I'm glad films still are good. :)

    You might like the letter change game that we have going on the community. :)
    Scope

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