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Feeling alone

Bluey32
Bluey32 Community member Posts: 34 Connected
edited September 2019 in Coffee lounge
I'm feeling really low  today?. I don't want to be ill anymore I wish my specialist can come up with a cure ? so I can go back to work &  the gym &  just be my old self  instead of being in pain &  fat. I'm getting fatter &  I need to buy more maternity clothes ? to fit around my belly.. I hate it when people ask when I'm due I just wanna cry & cry it's not fair why am I the only person in the UK with my condition so I can't even discuss it with anybody. 

Comments

  • Singingsam
    Singingsam Community member Posts: 3 Listener
    Hi Bluey32, I'm so sorry you're feeling rubbish right now. It's not easy struggling on your own.
     
    I've just joined Scope for the exact same reason. I have complex medical issues requiring long-term steroid treatment. I used to be slim and was training to be a nurse 25 years ago, when my health problems became life-threatening and I became 'officially' disabled and unable to work. I've been going downhill since then, am on oxygen, in constant pain and only able to walk from one room to another with a rollator - I'm 45.

    What makes my situation worse, is that I have no family living in the UK and struggle to get out, so only have one close friend, who lives an hour's drive away and is a full-time GP.

    The only advice I can offer, is something I do myself - I remind myself that how I feel today will not always be that way. My situation is unlikely to change, other than deteriorate, but I try to take each day as it comes and try to keep as mentally occupied as possible. As regards the weight gain, if there's nothing you can do to change that, then try to see it as your battle scar! Most 'ordinary' people don't know how tough living with disabilities is, but we keep breathing day in day out, despite often wanting to give up. We have an inbuilt strength, but it comes with 'scars' - uncomfortable, often self-esteem-affecting changes to our bodies. But we survive these changes and keep breathing.

    I wish I could share a magical secret that will make you feel better, but there isn't one. However, please know that you're not alone, there are so many others like us out there and we do understand how tough it can be, we care.


  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Hello @Bluey32!

    Do you have a hobby or not? That can help you make friends and learn new skills etc. What are your interests? Do you enjoy dancing or acting? There are a range of activities out there for disabled people. Take a look at this website for more ideas.  

    https://councilfordisabledchildren.org.uk/transition-information-network/information-and-support/activities

    If you are into art, find out if you can take art lessons. A number of care companies run activities for disabled folks. Visit the website below for more information on activities and clubs. Or you can ask around to see what is on offer too. Have you tried any form of sport? Alternatively you can sign up for a adult education class. 

    https://www.peoplefirstinfo.org.uk/health-and-well-being/learning-disability/activities-for-people-with-learning-disabilities/

    Good luck! I hope you find something appropriate for you. I hope this is useful as well. What about exercise classes for pregnant women? You can make friends that way. Another way to meet people is through volunteering. Find out if there are any local volunteering opportunities available. 
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    Hello Bluey and Singsam,
    I know it`s so hard trying to live with a  good frame of mind, when disability robs us of so much.
    I`ve had 20 years of it, but still battle on.
    I`m also struggling to lose weight..if only to help my carers!

    Hang in there girls!xx
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Hello Bluey and Singsam,
    I know it`s so hard trying to live with a  good frame of mind, when disability robs us of so much.
    I`ve had 20 years of it, but still battle on.
    I`m also struggling to lose weight..if only to help my carers!

    Hang in there girls!xx
    Have you tried Slimming World? 
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    Ty for all ur comments I felt really lonely yesterday probably most of u do most days. I'm glad I joined scope as it has helped me alot xxx
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    How are you feeling today @Bluey32?
    Community Manager
    Scope
  • kami24
    kami24 Community member Posts: 402 Pioneering
    edited September 2019
    Sad to hear. People are just thoughtless sometimes or wouldn't say about pregnancy if they knew you had an illness. They may just be trying to be friendly. I am always here if you need a friend. Just email me. [email removed by moderator] 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Bluey32, lovely to have you here. How are you feeling today?
    Scope

  • linlin01
    linlin01 Community member Posts: 38 Courageous
    I hope you feel better today @Bluey32, I find a good sleep, even during the day sometimes helps, plus something funny or diverting on TV or radio.  Episodes on Iplayer of Would I lie to You? always make me laugh  :)
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    I do feel a lot better today my wonderful husband booked me in at my hairdressers &  I had a full head of lovely blonde &  caramel high lights. I'm very grateful for all of you on here who have given me advice. It's only now & again I feel Really low. Ty again for all ur lovely words xxx
  • AnkyieSpon
    AnkyieSpon Community member Posts: 138 Pioneering
    Bluey32 said:
    I'm feeling really low  today?. I don't want to be ill anymore I wish my specialist can come up with a cure ? so I can go back to work &  the gym &  just be my old self  instead of being in pain &  fat. I'm getting fatter &  I need to buy more maternity clothes ? to fit around my belly.. I hate it when people ask when I'm due I just wanna cry & cry it's not fair why am I the only person in the UK with my condition so I can't even discuss it with anybody. 
    Hi please know that you are never alone. We are all here even if we don't have the same conditions. I've felt the same, don't want to be ill anymore, what's the point? Etc... Hobbies, gym, swim have helped me meet others but also motivate me. Cognitive behavioral therapy has been big help..... I'm terrified of heights and suffer from anxiety and I climbed the O2 arena last week ? never thought I'd do that!

    Small steps ?
    Tina 
    (Ankyie Spon)
    I'm a Pain Warrior
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    Bluey32 said:
    I do feel a lot better today my wonderful husband booked me in at my hairdressers &  I had a full head of lovely blonde &  caramel high lights. I'm very grateful for all of you on here who have given me advice. It's only now & again I feel Really low. Ty again for all ur lovely words xxx
    love the new hair description....xx
  • Cressida
    Cressida Community member Posts: 1,014 Pioneering
    @Bluey32 it does sound like you do have a wonderful husband. What a lovely treat :) A hair cut can do wonders! 
  • emmarenshaw
    emmarenshaw Community member Posts: 710 Pioneering
    Hello @Bluey32 welcome to the community. I’m glad to hear you are feeling better. Your new hair sounds lovely. Know that we’re here if you need us.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Bluey32, your hair sounds so lovely! Thank you for sharing. :)
    Scope

  • Audinut70
    Audinut70 Community member Posts: 133 Pioneering
    This post is shared with accepting your disability, I am/was a very active person before this disease hit me, I have accepted it, but I feel that I have nothing offer in a new relationship, it has just hit me tonight, talking to a bar person (female) and I bottled it, because I struggle doing tasks my kids do, I envy 70+ elderly, I am 49,my brain is 30,my body is a train crash. 
    I have recently, 1.5 years ago split from my partner of 18 years because of my condition, 
    I suppose I have accepted the fact that I am going to be alone for a long time. 

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Audinut70, thank you for sharing this with us and I'm sorry you are feeling lonely.

    That cannot have been pleasant to have that realisation while out in public, how are you doing today?

    It can be a massive change to become disabled, have you been able to access any support to help you with this transition? 
    Scope

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