To those disabled, and unable to work - How do you occupy yourself on a day-to-day basis? — Scope | Disability forum
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To those disabled, and unable to work - How do you occupy yourself on a day-to-day basis?

Earlysound
Earlysound Community member Posts: 37 Connected
edited June 2019 in Coffee lounge
Hey :)

I'm currently twenty-nine years old, and unable to work or volunteer. I am feeling a little lost as of late, and this is resulting in a recurrent feeling of depression.

I achieved quite a lot last year, and made a big step towards independence. I moved out from under my mum's roof, and into my own apartment! I never lived away from home before, so it was both a little exciting and scary at the same time.

As a result of not being able to work or volunteer, I have nothing but an abundant amount of time on my hands. The question “What do you do?” has become synonymous with “Who are you?” and something I am asked a lot, and never know how to respond.
I live in a small rural community, and I wish to keep my life as private as possible. Thus, I do not discuss the fact I am on UC/PIP, and I never reveal to people I know that I can't work.

I recently started attending a local Yoga group in the afternoons along with my Brother. It's a mixture of retirees/stay-at-home mums, and so I often get asked "What do you do for work?" as they're often surprised at my availability/freedom to attend things.

I've tried deflecting the question, and for the most part I manage to do so with limited-success. Yet, sometimes I have resorted to telling people "I'm self employed, and work from home doing ______".

I tell myself it's for privacy, and to stop people feeling they're free to comment on my day to day activities. Whilst, also offering up a reasonable explanation to my flexible (100% empty) schedule.

I'm interested to hear from those in a similar boat, and how you address the above questions. Also, how do you currently keep yourself occupied? What is your general day to day routine?

P.S.

I want to be clear I am not ashamed of being a disabled individual.
I arrived to the above through a history of negative remarks, and one malicious false report to the DWP. I've tried being open in my previous town, and it did not work out too well. I would get comments in regards to spending 'their' tax money, and what I should, would and could not spend the money on. Why should I get anything, when they've worked all their lives etc etc etc
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Comments

  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hi @Earlysound I am sorry to hear about your past negative experiences. Did you know you can volunteer online?

    I am one of Scope's online community champions - We welcome new members, signpost members to information that is relevant to them, ensure the community is a safe and supportive place for everyone. Also, we report any posts that do not follow our community guidelines. Plus, we respond to any unanswered posts.

    There are no set hours, you can volunteer as little or as much as you would like! If this sounds like something you would be interested in, our lovely senior community Officer @Sam_Scope will tell you all you need to know :)

    I understand how you feel as when I lost my job back in June 2017, due to my health deteriorating, I became severely depressed. I adored working and being part of a team and I missed it terribly.

    In February, last year, I came across Scope. I wanted to talk to others who truly understood what I was feeling. 1 year on and I absolutely love being part of our community. Its taught me a lot about myself, how to cope with my disabilities, I've learnt new things. I've also met some extraordinary people who I can call very good friends.

    I have physio once or twice a week. Sometimes hospital and other appointments. Mostly, I commit my time to the community. I also blog about various aspects which I face living with rare and chronic illnesses.

    If you ever would like to talk or vent, my inbox is always open :)

    Hi @Neeya welcome to the community! I completely agree with you in regards to social media being a lifeline. Without it, I honestly don't know what I would be doing. I'm able to talk to family and friends often. I've recently started talking to my 2 nieces via a messenger which I love as 1 of them lives over 100 miles away. 

    Being an active user of social media has enabled me to meet some incredible people and be offered amazing opportunities. Therefore, I am very grateful for social media!
    Disability Gamechanger - 2019
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  • deb74
    deb74 Community member Posts: 814 Pioneering
    hi Earlysound. I used to work as a volunteer in a charity shop and then left to work as a sales assistant, after 5 months I hurt my shoulder badly and had to give up my job and go on esa. I have a lot of hobbies including making jewellery and cards which I have now turned into a business. I suffer from ME, spina bifida, scoliosis, hydrocephalus, oesteo arthritis and cervical spondylosis as well as that dodgy shoulder and I find working for myself gives me the freedom to work at my own pace and take a day off if am having a bad day.
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  • [Deleted User]
    [Deleted User] Posts: 587 Listener
    Hi, I have severe anxiety, agoraphobia, social anxiety, depression and FM, I really don't do much and struggle to find things to occupy me because of my lack of concentration and attention span, plus I'm always tired. I used to be into online gaming but nowadays I don't really enjoy it, I don't like mixing with people at the best of times and would play online games on my own.

    I don't get asked if I work because I really don't mix with anyone other than my Mum and Son and it's nothing to do with anyone else what I do and don't do.

    I often wish I had some hidden talent so I could use that to get a job from home then I wouldn't have to rely on certain benefits which cause people so much stress. I originally wanted to be a carer for disabled people, but now I'm the one being cared for.

    Maybe I ought to look into being a community champion. I've been reporting posts and such.
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  • zakblood
    zakblood Community member Posts: 419 Pioneering
    been on incapacity and now ESA apart from on the 14th of this month when i again failed a medical assessment but appealing, so how do i spend my time, well for the last 20 years, a school governor in the evenings when ever i can and feel up to it, then all day almost every day, test games for free from all over the world, would love to do it for a job, but while i've been doing it for 20 years now, no qualification, little ability to go out, either mentally or physically to try and get them, so sit at the pc and test, write to a given company, as to be a free tester for them and then word of mouth, you get passed around and end up all of the place, spending as much time as you can on a given task, rewards, nil, well you get to keep the game in the end, but as most tester after a given amount of time would never play it again, after testing it for so long, you do it to fill in the day, and find stuff some others don't have to before release, been doing QA work again for free for about 5 years, but as i can't ever say from one day to the next how i'll be, i just do what i can, when i can and everyone seems more than happy for the help, so more of a hobby than a job, keeps the brain active and when your not feeling so well, can do it in bed even on the laptop, or just say no feedback today, not feeling so well, and they understand, unlike the assessors who seems to think now days everything is on looks alone, and not how you feel generally, liked the comment above about bathrooms, one of many reasons i don't go out so much, with most places now closing there's down, been on tablets now so long, got more than a few complications from long term meds use, so toilets are a need not a luxury i can do with out, unless i take plenty of changes of clothes every where i go 
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  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    I have a Specific Learning Difficulty. It does not stop me from working part time as a childcare provider.  I love writing. I don’t really have much free time but I either watch television or do something that keeps me busy and happy. 
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I was 47 when I started having serious issues which led to spinal surgery in 2005 however, in 2006 other spinal issues were discovered and since 2004 I have been unable to work. I suppose I don't get some of those comments because I did work for over 25 years and have always looked tough and imposing (completely the opposite of how I actually am).

    After suffering so long and having a progressive condition making me more and more disabled I now find it very hard to do anything much except playing a couple of online non-competitive games and watching TV but in the past have spent time at a local disability centre, joined groups using MEETUP (when I was still able to go out). I also joined a local Bridge club and visited and helped family members. It actually seems that I have spent my whole life helping others but, now that I can't and need help myself, get no help at all and have to try and cope on my own. If a person is religious then there are often extra things they can organise that could me helpful as well. There are also many sites like this where you can get into contact with other like-minded people who do not judge. I guess the best thing to do is to go google mad looking for anything relevant and nearby.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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  • Earlysound
    Earlysound Community member Posts: 37 Connected
    Thanks to everyone for all the responses, in the last couple of days I thought I would give dry pastels a go as I loved blending all the colours together with my finger as a kid. I think I'll enjoy experimenting with colours etc.

    I also came across a few videos of some people who're running their own business making handmade soaps and shampoo bars, and they give you tutorials/recipes on making your own soaps and shampoo bars, it was interesting. Not sure what I'll do with an abundance of soap and shampoo bars, but I guess you could save money in the long term with excess soap / shampoo bars. 
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  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Why not see if you can get a qualification in something that interests you or not? Learn direct run online courses for a variety of people or you could always see if there are any adult learning centres near you. 

    https://www.learndirect.com/



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  • woodbine
    woodbine Community member Posts: 11,609 Disability Gamechanger
    I had to end my successful career 22 years ago at the age of 38 due to my severe epilepsy, at first I was bored to tears (literally), but now I try and achieve(do) something everyday when possible, at least then I feel like I have achieved something, most if not all our neighbours know about my condition but I never ever discuss my benefits with them.
    2024 The year of the general election...the time for change is coming 💡

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  • tc55
    tc55 Community member Posts: 7 Listener
    I am 63 years old and have not been able to eork for 20 years.I have Chronic Fatigue Syndrome but don't like to dwell on it. I  have no choice but to sit down for most of the day. I read, listen to audio books, play computer games and do jigsaw puzzles but even so some days I could scream with boredom.
    Living on your own doesn't help, I have 4 children and for me silence is deafening, I listen to a lot of podcasts especially when television isnt good.
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  • Adrian_Scope
    Adrian_Scope Posts: 10,935 Scope online community team
    What sort of audio books and podcasts do you listen to @tc55? It sounds like you've got a range of interests to keep you busy, but I agree (even as a bit of a loner myself) that a lot of interests can be a poor substitute for other people. How old are your children?
    Community Manager
    Scope
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  • tc55
    tc55 Community member Posts: 7 Listener
    The skeptics guide to the universe is a really good science based  podcast, the infinite monkey cage is another science based one with some comedy as well. The hurricane is about a man spending a long time in prison for a murder he didnt commit. Untold: the daniel morgan murder is good.

    My children have all left home they are 41,39, 35 and 32, spread around the country, my son Daniel(35) has a 21month old son who enjoys winding up his dad just like Daniel did to me.

    The audiobooks I listen too are a mixture of light books to listen to when I go to bef a and something more interesting during the day, at the moment I am listening to a book about one of Nelson Mandela's white secretaries, I have a great deal of admiration for him. Philip Pullman's dark triology are good for listening to in bed also listened to the Harry Potter books Stephen Fry reads them and he makes a brilliant job of it. It is well worth joining audible its £7.99 a month but the books are generally over £20 to buy. The hunt fot the red october is a really good book.

    I can understand you want to keep your health problems
    private I am a private person I hate dwelling on my problem and do not like to be fussed over.

    Hope you find something among my suggestions that you like.
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @tc55, they all sound really interesting! I've heard good things about the Harry Potter audio books as well! Not had the chance to listen to them myself though!
    Scope

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  • tc55
    tc55 Community member Posts: 7 Listener
    They really are brilliant but join audible otherwise it will be expensive.
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Thanks for the recommendation @tc55 :)
    Scope

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  • Kell430
    Kell430 Community member Posts: 59 Courageous
    I haven't been working since 25th March this year, due to waiting for surgery and my work not allowing me to sit down when I absolutely need to ( i work in a care home).  So I too am looking for things to do to pass the time, at present I can't walk very far and I don't drive,  I do tend to read and play online games, but I like to be outside weather permitting xxx
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  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    I also am currently doing a puzzle book my mom sent me for Christmas. I have emailed a music teacher as I want to begin learning a music instrument as well. I have also investigated the option of doing French lessons but I have very little money at the moment. I enjoy baking. Today I made a batch of biscuits and cakes with the kids helping me.
    What are some more low cost options for entertainment? We are members of our local leisure centre and library too. 
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  • 2louises
    2louises Community member Posts: 5 Listener
    This situation scares me. My daughter is Autistic and has only one more year left at school. My daughter wants to go college and learn performing music, but her school doesn’t think she’d cope. I don’t know, I think with right support she could. Wether she’d get that isa different matter!  She needs to kept interested or she gets bored and just walks out or starts doing her own thing. What we’ll do if she can’t go I’m not sure. Her own social worker suggested YouTuber which I wasn’t impressed by! (no disrespect to those that do) .
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