do you have down days with your disability?

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Comments

  • strawberrysherbet11
    strawberrysherbet11 Online Community 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 Online Community Member Posts: 184 Contributor
    yes
    strawberrysherbet11 said:
    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?
  • strawberrysherbet11
    strawberrysherbet11 Online Community 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 Online Community Member Posts: 184 Contributor
    yes
    strawberrysherbet11 said:
    @ellieflower3 I’m struggling a little bit but not too bad at the moment, thank you. How about you? :)
    not great :( glad your okay
  • ballkeeper
    ballkeeper Online Community Member Posts: 80 Empowering
    not just days but weeks then a day when not so bad
  • ellieflower3
    ellieflower3 Online Community Member Posts: 184 Contributor
    yes
    ballkeeper said:
    not just days but weeks then a day when not so bad
    yeah i agree
  • ellieflower3
    ellieflower3 Online Community Member Posts: 184 Contributor
    yes
    ballkeeper said:
    not just days but weeks then a day when not so bad
    u ok
  • ballkeeper
    ballkeeper Online Community Member Posts: 80 Empowering
    yup today a good day ,find listening to music.
    thank you for asking,
  • ellieflower3
    ellieflower3 Online Community Member Posts: 184 Contributor
    yes
    ballkeeper said:
    yup today a good day ,find listening to music.
    thank you for asking,
    gd gd
  • ellieflower3
    ellieflower3 Online Community Member Posts: 184 Contributor
    yes
    ballkeeper said:
    yup today a good day ,find listening to music.
    thank you for asking,
     :'( <3  
  • Glen1981
    Glen1981 Online Community Member Posts: 20 Connected
    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 Online Community Member Posts: 562 Empowering
    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 Online Community Member Posts: 184 Contributor
    yes
    GlenCornhill said:
    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
  • ellieflower3
    ellieflower3 Online Community Member Posts: 184 Contributor
    yes
    nannymaroon said:
    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
  • natz2009
    natz2009 Online Community Member Posts: 76 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 Scope Posts: 12,471 Championing
    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?
  • ellieflower3
    ellieflower3 Online Community Member Posts: 184 Contributor
    yes
    hey, I do! natz2009 said:
    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
    hello, how are you?
  • Glen1981
    Glen1981 Online Community Member Posts: 20 Connected
    yes
    I think anxiety and depression go hand in hand with disabilities. I also get tired really easy (worse the last few years) and that gets me down. 
  • Grinchy
    Grinchy Online Community Member Posts: 1,953 Championing
    yes
    great thread, i sometimes have bad days, i've finally been diagnosed with non epileptic attack disorder, after years thinking i was epileptic, sounds fake to me but feels very real, at least i know for sure, anyway i hope everyone here has better days stay strong folks

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