do you have down days with your disability? — Scope | Disability forum
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do you have down days with your disability?

ellieflower3
ellieflower3 Member Posts: 171 Courageous
no judgement just a question because I do and want to connect with as many as possible to help and get stuck in!
Lilly Josh  <3

do you have down days with your disability? 12 votes

yes
91%
aboorawoodbinelittleacornnatz2009nannymaroonAmi_HostL_Volunteerstrawberrysherbet11sand74GlenCornhillellieflower3 11 votes
no
0%
sometimes
8%
66Mustang 1 vote
depends when I wake up
0%

Comments

  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    thank you @Ami_Host for voting so lovely <3
    Lilly Josh  <3
  • Ami_Host
    Ami_Host Community Volunteer Host Posts: 52 Connected
    yes
    Absolutely, I think it's normal to have days where we become so frustrated because of our limitations. It's difficult to manage your feelings about it when you're having a bad day with them, but that's ok :)
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    Ami_Host said:
    Absolutely, I think it's normal to have days where we become so frustrated because of our limitations. It's difficult to manage your feelings about it when you're having a bad day with them, but that's ok :)
    going to like your post as it's bang on correct! I find it hard to connect with others when I feel so yucky but I'm getting there
    Lilly Josh  <3
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 286 Pioneering
    yes
    Hello @ellieflower3

    Yes, I certainly think some days are better or worse than other days. How are you currently? It is great to see you getting involved with so much on the forum already  :D
    I have expertise in the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    Hello @ellieflower3

    Yes, I certainly think some days are better or worse than other days. How are you currently? It is great to see you getting involved with so much on the forum already  :D
    I love it! just getting the hang on things :) I'm okay, finished work today as I can't move etc but least I can still feed Teddy. How are you?
    Lilly Josh  <3
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 286 Pioneering
    yes
    Hi @ellieflower3

    I notice a really important thing about your post! That is you are able to recognise when you are struggling and put support in place for yourself. Well done. I hope you can get the rest you need. I am okay thank you  :)
    I have expertise in the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    Hi @ellieflower3

    I notice a really important thing about your post! That is you are able to recognise when you are struggling and put support in place for yourself. Well done. I hope you can get the rest you need. I am okay thank you  :)
    :) Just glad to support others
    Lilly Josh  <3
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 286 Pioneering
    yes
    I can tell that you enjoy supporting others @ellieflower3. It is great, the world always benefits from people helping people. However, please know we are also here for you if you need support :)
    I have expertise in the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    I can tell that you enjoy supporting others @ellieflower3. It is great, the world always benefits from people helping people. However, please know we are also here for you if you need support :)
    your very pretty also btw and thnak you
    Lilly Josh  <3
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 286 Pioneering
    yes
    Thanks @ellieflower3 :)
    I have expertise in the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
     :) 
    Lilly Josh  <3
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    just to add hope your having a nice day
    Lilly Josh  <3
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 5,520 Disability Gamechanger
    sometimes
    I don’t have a physical disability but I do have limitations due to my mental health problems. I sometimes feel sad that I can’t do things, more often than not it’s little things that others take for granted rather than the big things. I mean I wanted to be a pilot but have come to terms with the fact that that will not happen, but I’d call that a big thing. It is more the little things like jumping in the car and going to the shops or being able to spend a day alone at home without support that I will never accept that I can’t do. However I try to use this lack of acceptance as fuel to fight the issues and find support and hopefully get better in the future.

    I hope this rambling makes sense!
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    66Mustang said:
    I don’t have a physical disability but I do have limitations due to my mental health problems. I sometimes feel sad that I can’t do things, more often than not it’s little things that others take for granted rather than the big things. I mean I wanted to be a pilot but have come to terms with the fact that that will not happen, but I’d call that a big thing. It is more the little things like jumping in the car and going to the shops or being able to spend a day alone at home without support that I will never accept that I can’t do. However I try to use this lack of acceptance as fuel to fight the issues and find support and hopefully get better in the future.

    I hope this rambling makes sense!
    sending you hugs. it's still classed a disability :) but I can't get out of bed due to a broken back so is that a disability?
    Lilly Josh  <3
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 5,520 Disability Gamechanger
    sometimes
    66Mustang said:
    I don’t have a physical disability but I do have limitations due to my mental health problems. I sometimes feel sad that I can’t do things, more often than not it’s little things that others take for granted rather than the big things. I mean I wanted to be a pilot but have come to terms with the fact that that will not happen, but I’d call that a big thing. It is more the little things like jumping in the car and going to the shops or being able to spend a day alone at home without support that I will never accept that I can’t do. However I try to use this lack of acceptance as fuel to fight the issues and find support and hopefully get better in the future.

    I hope this rambling makes sense!
    sending you hugs. it's still classed a disability :) but I can't get out of bed due to a broken back so is that a disability?
    Thanks :)

    I don’t really know the official definition of a disability but I’m quite sure that would count. I’m sorry to hear you are in that situation, though, I’m glad you joined this forum, I think you will find it really helpful and supportive.
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    66Mustang said:
    66Mustang said:
    I don’t have a physical disability but I do have limitations due to my mental health problems. I sometimes feel sad that I can’t do things, more often than not it’s little things that others take for granted rather than the big things. I mean I wanted to be a pilot but have come to terms with the fact that that will not happen, but I’d call that a big thing. It is more the little things like jumping in the car and going to the shops or being able to spend a day alone at home without support that I will never accept that I can’t do. However I try to use this lack of acceptance as fuel to fight the issues and find support and hopefully get better in the future.

    I hope this rambling makes sense!
    sending you hugs. it's still classed a disability :) but I can't get out of bed due to a broken back so is that a disability?
    Thanks :)

    I don’t really know the official definition of a disability but I’m quite sure that would count. I’m sorry to hear you are in that situation, though, I’m glad you joined this forum, I think you will find it really helpful and supportive.
    I made a mental health thread saying why I am here! and, how are you doing today?
    Lilly Josh  <3
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 5,520 Disability Gamechanger
    sometimes
    @ellieflower3 I will take a look at that thread

    I am not too bad today, thanks, I am meant to be doing some study :D but just taking a short break to come on here for a bit. What about you?
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    66Mustang said:
    @ellieflower3 I will take a look at that thread

    I am not too bad today, thanks, I am meant to be doing some study :D but just taking a short break to come on here for a bit. What about you?
    tired chilling with this little dude 
    Lilly Josh  <3
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 5,520 Disability Gamechanger
    sometimes
    Nice :) he looks comfortable there hehe
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    66Mustang said:
    Nice :) he looks comfortable there hehe
    he is on my feet lol
    Lilly Josh  <3
  • strawberrysherbet11
    strawberrysherbet11 Member Posts: 38 Connected
    yes
    I definitely have down days, both mentally and physically. Especially in a pain flare or where I don’t have a lot of energy, I just get so fed up. The past few days I’ve been struggling a bit mentally, so just been in bed watching TV mostly. I just always try to take it easy when I’m like this :) 
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    I definitely have down days, both mentally and physically. Especially in a pain flare or where I don’t have a lot of energy, I just get so fed up. The past few days I’ve been struggling a bit mentally, so just been in bed watching TV mostly. I just always try to take it easy when I’m like this :) 
    im in bed but down today :) you okay?
    Lilly Josh  <3
  • strawberrysherbet11
    strawberrysherbet11 Member Posts: 38 Connected
    yes
    @ellieflower3 I’m struggling a little bit but not too bad at the moment, thank you. How about you? :)
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    @ellieflower3 I’m struggling a little bit but not too bad at the moment, thank you. How about you? :)
    not great :( glad your okay
    Lilly Josh  <3
  • ballkeeper
    ballkeeper Member Posts: 80 Pioneering
    not just days but weeks then a day when not so bad
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    not just days but weeks then a day when not so bad
    yeah i agree
    Lilly Josh  <3
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    not just days but weeks then a day when not so bad
    u ok
    Lilly Josh  <3
  • ballkeeper
    ballkeeper Member Posts: 80 Pioneering
    yup today a good day ,find listening to music.
    thank you for asking,
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    yup today a good day ,find listening to music.
    thank you for asking,
    gd gd
    Lilly Josh  <3
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    yup today a good day ,find listening to music.
    thank you for asking,
     :'(<3  
    Lilly Josh  <3
  • GlenCornhill
    GlenCornhill Member Posts: 4 Listener
    yes
    Today has been one, but it’s more an exhaustion day, I already sleep 10-12 hours a day or can’t function properly, last night and today I’ve slept about 18 hours of broken sleep, except to nibble and top up my hot water bottles.

    But I prefer to call it a recharge day not a down day. I haven’t been able to even read or enjoy music or watch tv, just want to sleep and be numb. If I feel it’s a negative day then I get in a trap of anxiety and depression rather than giving myself permission to have rest days when I need them. 
  • nannymaroon
    nannymaroon Member Posts: 220 Courageous
    yes
    I do have down days esp when I am in pain. Mostly my down days are caused by having to deal with other people and their behaviour.
    I can cope with isolation and having a chronic illness. But other people's behavior still can upset me.

    I can avoid other people but not my pain so I have to to ration my energy if I have appointments or things I have to do. It's very frustrating and like many of us, I have to monitor my mood myself to stop from slipping into depression because of being exhausted and in pain.
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    Today has been one, but it’s more an exhaustion day, I already sleep 10-12 hours a day or can’t function properly, last night and today I’ve slept about 18 hours of broken sleep, except to nibble and top up my hot water bottles.

    But I prefer to call it a recharge day not a down day. I haven’t been able to even read or enjoy music or watch tv, just want to sleep and be numb. If I feel it’s a negative day then I get in a trap of anxiety and depression rather than giving myself permission to have rest days when I need them. 
    oh so sorry. hugs
    Lilly Josh  <3
  • ellieflower3
    ellieflower3 Member Posts: 171 Courageous
    yes
    I do have down days esp when I am in pain. Mostly my down days are caused by having to deal with other people and their behaviour.
    I can cope with isolation and having a chronic illness. But other people's behavior still can upset me.

    I can avoid other people but not my pain so I have to to ration my energy if I have appointments or things I have to do. It's very frustrating and like many of us, I have to monitor my mood myself to stop from slipping into depression because of being exhausted and in pain.
    i feel like that today. feel like i cant move a muscle i feel weak
    Lilly Josh  <3
  • natz2009
    natz2009 Member Posts: 73 Connected
    yes
    Yes certainly one of those days today i dont have any social life anymore had 2 friends but got ditched not long after i was dignoised with fibromyalgia now only person that visits is my dad and my ex partner to see the kids also have mental health issues and yeah 90% of the time it gets me down i dont really know anyone where i live so its isolation all the time wouldnt matter about a pandemic hope everyone is doing ok x
  • Tori_Scope
    Tori_Scope Posts: 5,974

    Scope community team

    I'm sorry to hear that @natz2009. I hope that the community can be a good source of support for you, and keep you company if you feel a bit lonely :) 

    Have you considered joining any social groups in your area?
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